Health IQ - Benchmarking and reporting

Health IQ requires access to NHS England Data for the purpose of providing data-based insight, Health IQ produce tools and reports services to clients in the health sector.

Health IQ seeks to process data held by NHS England to conduct benchmarking, service provision analysis and querying patient pathways and the burden of disease. This use of the data aims to provide valuable insights into regional differences in access to treatment across England in the form of static reports or through an interactive dashboard called the ‘Vantage Platform’.

Licenses to this interactive Vantage dashboard would enable users to query the data and receive outputs as an aggregate, non-identifying and small-number suppressed format. Additionally, reports based on outputs from the tool. Standalone research utilising the same data can also be provided on a commercial basis and consist of additional analysis and stratification involving more complicated statistical methodology such as matching and stratification while still maintaining the same level of small number suppression.

Health IQ will offer the tool to customer groups listed below. Reports that are thought to be of interest to the public through queries to the website, or through interaction with members of the public will be provided free of charge and published on the Health IQ website.

The Data will be used to provide services to the following types of clients:

• NHS Users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

• Commissioning Support Units (CSUs)

• Governmental organisations (NHS England, DH, NICE, AHSNs).

• Social care (Local Authorities, Health & Wellbeing Boards).

• Charities, not-for-profit organisations and academic institutions.

• Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

• Universities

The Data will be used to provide the following services:

• Benchmarking a healthcare provider (ICS or hospital or groups) against another ICS/hospital/group/national average/previous year

• Querying and defining populations within an ICS/hospital/group (patients with a diagnosis, number of procedures, which can be subdivided by age group/gender.

• Service Planning and Improvement: Using the data to perform a service evaluation including gathering evidence for value for money, effectiveness, or creating a baseline to measure change.

• Care pathway analysis: Using the data to create a patient pathway and define roadblocks towards management.

The objectives of this work platform by the data controller Health IQ are the following:

Objective 1: Vantage system and associated support: Provide data for the Vantage platform to allow the function of underlying analytics modules.

Objective 2: Research and analysis. Provide reports and analysis based on the requested datasets to support on individual requests.

Objective 3: Public access reports. Provide public reports that are in the public interest and that are freely available via the Health IQ website.

The following NHS England Data will be accessed:

- Hospital Episode Statistics Admitted Patient Care (HES APC) – necessary to calculate burden across inpatients care and rehospitalisation for conditions such as myocardial infarct and type 2 diabetes.

- Hospital Episode Statistics Accident & Emergency (HES A&E) – necessary to calculate burden across accident and emergency attendances.

- Hospital Episode Statistics Critical Care - necessary to calculate the additional burden of patients (eg: patients with myocardial infarcts and type 2 diabetes) who end up in critical care.

- Hospital Episode Statistics Outpatients (HES OP) - necessary to calculate burden for a disease (eg: myocardial infarct and type 2 diabetes) across outpatients.

- Hospital Episode Statistics Emergency Care Data Set (ECDS) - necessary to calculate burden across accident and emergency attendances.

- Diagnostic Imaging Dataset (DID) – necessary to evaluate how often patients who end up with dementia have investigations. The same applies to other chronic conditions such as axial spondyloarthritis. The diagnostic imaging dataset is required as management of conditions frequently requires imaging (CT/MRI/XR/PET). This is not included in the APC or OP or ECDS data, and would be important to 1) allow providers to assess how often they are using imaging compared to other providers in different groups (diagnosis, gender, age group) and 2) therefore evaluate whether there are any gaps in the care provision for certain groups (eg: CT scan in patients with vascular dementia).

- Mental Health Services Data Set (MHSDS) – necessary for important 3 reasons. 1) In the literature of patients with chronic diseases, mental healthcare is a strong component, but is not evaluated in the current datasets. An evaluation of patients with chronic conditions such as COPD and the overlap with mental health conditions may show differences in how the mental health aspect of chronic disease care is managed from healthcare provider to healthcare provider. 2) Mental health conditions with neuroleptic treatment is associated with metabolic syndrome resulting in higher and more severe cardiovascular disease. Assessing how these patients do in different healthcare providers where in terms of treatment pathway is important for an underserved group. 3) Patients with mental health conditions who are hospitalised are typically not recorded in APC as they attend specialist mental health units. Establishing how many patients with certain conditions that require mental health service exist for each healthcare provider and characterising them is important to query. Additionally, this would be used to show the patient pathway in different healthcare providers.

The level of the Data will be:

• Pseudonymised.

The Data will be minimised for each use in the following ways:

• Limited to data between 2018/2019 onwards to the latest available.

• Individual patient data is only available to analysts to prepare data to enter the Vantage dashboard, from where users will only have access to aggregated data with small number suppression.

• Data subjects are patients whose data is captured within HES OP, APC, A&E, ECDS, MHSDS or DID.

Health IQ Ltd is the sponsor and the data controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(f) - the processing is necessary for the legitimate interests of the data controller or the legitimate interests of a third party, unless there is a good reason to protect the individual’s personal data which overrides those legitimate interests.

Health IQ as part of their Legitimate Interests and commercial operation will use the data to grant licenses to their Vantage tool and other reports to customer groups with an aim to support services to healthcare providers and enable those organisations to deliver better healthcare to the population. Health IQ also offer the tool to the NHS at cost, and offer free reports to the public, which are developed around topics of current relevance and published on a dedicated page on the website.

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This is in the public interest because the access to the special category data will enable Health IQ’s clients who access data via the Vantage Platform make the world healthier and safer by enabling better decision making by understanding and quantifying the burden of disease, supporting service improvement through treatment and efficiency and adding to the body of healthcare knowledge available through robust research. While these aims are carried out.

The funding is provided by Health IQ. The funding is specifically for the study described. Funding is in place on an ongoing basis. The funder(s) will have no ability to suppress or otherwise limit the publication of findings.

Amazon Web Services (AWS) is a data processor who provides IT hosting services to Health IQ and will store the data as contracted by Health IQ. Amazon Web Services do not have access to any of the data that Health IQ that is hosted on their infrastructure.

PPD (Pharmaceutical Product Development) is a processor acting under the instructions of the Health IQ to process the data for the purposes described above.

There are no other organisations involved in this project.

Patient level data will be accessed by substantive employees of Health IQ , a single contractor employed by Health IQ and substantive employees from PPD who have permission by the principal investigator, with access limited for the purposes of carrying out analysis only.

Health IQ and PPD will only process that data for the purposes described above.

There is a commercial aspect to the processing, in that Health IQ sell licenses to access the Vantage Platform and other reports to customer groups listed above. Health IQ also offer the tool to the NHS at cost, and offer free reports to the public, which are developed around topics of current relevance and published on a dedicated page on the website. All the above are in an aggregate, non-identifying and small-number suppressed format.

Health IQ's current split between commercial and non-commercial (NHS providers and universities) customers is 54:46 following the recent signing of 2 large Academic Health Science Networks. Health IQ Ltd aims to sign on more non-commercial organisations to increase the NHS proportion to at least 50:50.

All outputs from the processing of HES data are always used for the improvement of patient care, whether directly or indirectly.

Commercial arrangements are in two forms, either a data-project undertaken by Health IQ and funded by the client, or a licensed based access to our Vantage Platform. The client is an organisation within the approved groups as listed in this document (objective for processing).

In the first instance, Health IQ contract with the company to undertake a defined project. All analysis is carried out by Health IQ staff, either on-site at health IQ facilities or via a remote access. This includes a remote access by PPD staff who have permission by the principal investigator.

No external individual ever has any access to patient-level data. Upon completion, Health IQ provides a report which may include data which would always be in a de-identified, aggregate and small-number suppressed form.

In the second instance, the client contracts with Health IQ on an annual license basis for access to the Vantage tool. This provides data only in a de-identified, aggregate and small-number suppressed form.

In both cases the authorised purposes by which the data can be used (as outlined in objective for processing) are incorporated into the contract and are hence legally binding upon the company.

Analysis conducted by Health IQ falls under the remit of scientific research/service evaluation and is often published in some form. Hence Health IQ are permitted to process personal data under GDPR recital 157, for the purpose of furthering scientific research in healthcare.

Health IQ’s clients use data in order to support healthcare organisations to improve the delivery of healthcare services and benefit patient care. This underlying principle of providing a benefit to healthcare is written into the client contract and is made clear at every stage. The data held under license has no value to Health IQ’s client base for the purpose of marketing (as it is de-identified), nor is it permitted to offer it to companies who do not have an underlying healthcare benefit as a reason for wanting to use it.

The following is a summary of what outputs will be produced as part of this programme of work.

Outputs relating to Objective 1 (Vantage System and Related Support):

The Vantage Platform will continue to be used by users within the list of approved organisations (outlined in ‘objective for processing’) solely for the purposes stated within this DSA. Outputs are either internal dashboards and reports within the platform or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with the HES analysis guide and this DSA.

Data will explicitly not be used for sales and marketing purposes. All queries run from the Vantage Platform are logged in the system and are hence auditable on request. An example of a planned use is Health IQ's Integrated Care Systems (ICS) Metrics Dashboard. This is a graphical presentation of key metrics as defined by NHS priorities such as waiting times, elective/non-elective care length of stay, deprivation associated mortality rates and more, which will be tracked according to the new NHS ICS structure to understand how individual localities are performing year on year as well as pre-/post- COVID-19 and against other localities. The dashboard will address the conditions covered in the Core20plus5 scheme, which aims to provide better care for patients within the 20% most deprived population. This tool is already in production.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. PROMISE (Preparing for RSV (respiratory syncytial virus) Immunizations and Surveillance in Europe) analysis is planned: This analysis will describe RSV hospital activity over time, before, during and after the COVID-19 pandemic across 5 European countries (England, Denmark, Finland, the Netherlands, Spain). It aims to improve the understanding of the effect COVID-19 had on RSV circulation through observation of changes in the associated healthcare activity, and support future public health planning. The planned manuscript will present the collated results from the 5 countries. This manuscript is under discussion for publication in 2025.

2. Anastomotic leak analysis: To understand the costs associated with anastomatic leak (AL) after left-sided colorectal surgery in England. Existing cost studies are limited or too old to be relevant to current clinical practice; avoiding AL could reduce healthcare costs for patient who undergo colorectal surgery. The analysis using HES data will be submitted for peer review publication to provide up to date results for England. This manuscript is under discussion for publication in 2025.

3. Advanced systemic mastocytosis analysis: The study aims to improve understanding of the treatment pathway, survival, and healthcare resource use associated with advanced systemic mastocytosis (ASM). A manuscript will be considered if the results generate a narrative that would be beneficial for dissemination to the relevant clinical audience: This work provides a greater understanding of the incidence/prevalence, treatment pathway, survival, and healthcare resource use associated with advanced systemic mastocytosis (ASM), a rare disorder, which is poorly researched in England. The results are intended to provide real-world data for inclusion in NICE submission for Ayvakit. The detailed reporting of the clinical and economic burden provided by this study aids policy maker evaluation of novel therapies. This has been submitted and is under discussion by NICE.

4. Graft-versus-host disease (GvHD) analysis: Currently, there is still no standard second-line therapy. HES data was used to describe the healthcare resource use and cost of patients with cGVHD after allo-HSCT and for matched controls without GVHD after allo-HSCT. The treatment and patient pathways for patients with cGVHD were also described post-diagnosis. Initial results have been presented at conference, work to draft a manuscript from this and further conference abstracts related to the patient pathway is due at COSTEM and the manuscript is under consideration by the Journal of Transplantation and Cellular Therapy.

Outputs relating to Objective 3 (Public Access Health IQ Insight Reports):

Research using retrospective data will be published in scientific journals and at scientific conferences; e.g; a poster has published in graft vs host disease at the European Haematology Congress.

Patients will be able to request and access free reports via the HealthIQ website which will be published on site (resource dependent). Several reports have already been published on the website including in diabetes and Alzheimers disease.

Health IQ will continue to publish reports for public access, either via the Health IQ website (https://www.corevitas.com/resource/nhs-public-access-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Examples of planned use:

1. Elective care recovery, tracking the difference in % admissions before COVID-19, during COVID-19 and after COVID-19

2. National, regional and ICS based inequalities report analysing key outcome measures such as non-elective admissions, excess bed days, average bed days and mortality in hospital for Core20plus 5 conditions

Reports are also made public on the social media profile of the company (on LinkedIn) which allows users to download the report. Linkedin Posts are carried out around the relevant disease days to notify social media users of research that would be relevant to them.

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

Health IQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from the use of the NHS England data. These are typical of the type of usage Health IQ customers offer to the NHS and will continue to provide (on renewal of the data).

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Multiple sclerosis (MS) infection study: The study compared healthcare associated infections (HCAI) in infusion treated patients with MS and patients with RA. The results showed similar mean number of infection-related hospitalization in MS and RA patients in the 28 days following infusion. Thankfully, the study found a low rate of HCAI among infusion treated MS and RA patients but still highlights the infection risk faced by patients who need to attend healthcare settings to receive immunosuppressive and immunomodulatory agents, and the importance of infection prevention. The results were used to generate a patient-facing tool to enable discussion on their condition and associated complications. Further analysis is required before publication can be considered.

2. Sickle cell disease (SCD) HES analysis prepared in 2022: the analysis was conducted to understand the existing burden of breakthrough haemolysis (BTH) to patients and the NHS and to help assess the cost effectiveness and budget impact of LentiGlobin treatment. The data showed a high recurrence of SCD crises which result in overnight hospitalization which effects patient wellbeing and results in a healthcare and societal burden. The data were also included in the submission for regulatory approval; having real world data to support HTA submissions aids policy makers evaluation of novel therapies.

3. Abstract, manuscript, and poster: “The direct healthcare burden associated with chronic graft-versus-host disease following allogeneic haematopoietic stem cell transplant in England: a real-world evidence analysis”: was presented as a poster at the European Hematology Association Congress 2023. A manuscript is in drafting to be submitted to Transplantation and Cellular Therapy journal, entitled “Healthcare resource utilization and associated costs in patients with chronic graft-versus-host disease post allogeneic hematopoietic stem cell transplantation in secondary healthcare settings in England. This work provides a greater understanding of the direct healthcare burden (use and cost) associated with cGVHD, for which there was previously little known in a UK context. Abstract “Chronic graft-versus-host disease following allogeneic haematopoietic stem cell transplant requires a complex multi-specialist care pathway: a real-world evidence analysis from England”: has been submitted to COSTEM Congress 2023 and illustrates the numerous healthcare visits the patients require, impacting their everyday life.

4. Poster and Manuscript: “Inequity in access to aortic valve replacement- a retrospective database study of patients in England” was presented as a poster at the EuroPCR conference in 2022. A manuscript entitled “The Impact of gender, ethnicity, and social deprivation on access to surgical or transcatheter aortic valve replacement in aortic stenosis: A retrospective database study in England” was published by OpenHeart journal in October 2023. Treatment differences by gender, ethnicity and deprivation were found among patients with AS. Public health initiatives may be required to increase clinician and public awareness of unconscious biases towards minority and vulnerable populations to ensure timely AVR for everyone. This was picked up by the broadsheets including The Guardian and highlighted treatment inequality to the public.

5. Aortic valve replacement analysis: Aortic valve replacement (AVR), either transcatheter or surgical (TAVI or SAVR), is standard care among patients with aortic stenosis (AS). Whether gender, ethnicity, and deprivation-based differences affect the provision of aortic valve intervention in England is unknown so we used HES data to investigate. The results of this analysis have been published in a peer review manuscript.

Relating to Objective 3 (Public Access Health IQ Insight Reports):

Published reports are listed here: (https://www.corevitas.com/resource/nhs-public-access-reports):

1. “Utilising real world data to uncover health inequities in type 2 diabetes” looks at patients with type 2 diabetes, grouped by ICD-10 E11 and broken down by age, gender and ethnicity with socioeconomic status grouped in the lower five deciles of IMD or the upper five deciles, representing the most and least deprived populations.

2. “Stroke disease awareness” looks at patient counts by age group, patient counts by gender, procedures by patient count and primary diagnosis by patient count

3. “Urology in emergency care” looks at patients with a diagnosis of kidney disease and broken down by admission counts, chief complaint, discharge status and discharge destination

4.“Admissions by provider trusts in England for total excision of colon (H05), excision of sigmoid colon (H10) and other excision of colon (H11)” looks at the variation in admissions broken down by NHS trust across England

5. Dementia awareness looks at patient counts by age group, primary diagnosis by admission and time from first admission and diagnosis of dementia to death. Its role was to highlight outcomes faced by patients with dementia when they were in hospital.

Health IQ requires access to NHS England Data for the purpose of providing data-based insight, Health IQ produce tools and reports services to clients in the health sector.

Health IQ seeks to process data held by NHS England to conduct benchmarking, service provision analysis and querying patient pathways and the burden of disease. This use of the data aims to provide valuable insights into regional differences in access to treatment across England in the form of static reports or through an interactive dashboard called the ‘Vantage Platform’.

Licenses to this interactive Vantage dashboard would enable users to query the data and receive outputs as an aggregate, non-identifying and small-number suppressed format. Additionally, reports based on outputs from the tool. Standalone research utilising the same data can also be provided on a commercial basis and consist of additional analysis and stratification involving more complicated statistical methodology such as matching and stratification while still maintaining the same level of small number suppression.

Health IQ will offer the tool to customer groups listed below. Reports that are thought to be of interest to the public through queries to the website, or through interaction with members of the public will be provided free of charge and published on the Health IQ website.

The Data will be used to provide services to the following types of clients:

• NHS Users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

• Commissioning Support Units (CSUs)

• Governmental organisations (NHS England, DH, NICE, AHSNs).

• Social care (Local Authorities, Health & Wellbeing Boards).

• Charities, not-for-profit organisations and academic institutions.

• Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

• Universities

The Data will be used to provide the following services:

• Benchmarking a healthcare provider (ICS or hospital or groups) against another ICS/hospital/group/national average/previous year

• Querying and defining populations within an ICS/hospital/group (patients with a diagnosis, number of procedures, which can be subdivided by age group/gender.

• Service Planning and Improvement: Using the data to perform a service evaluation including gathering evidence for value for money, effectiveness, or creating a baseline to measure change.

• Care pathway analysis: Using the data to create a patient pathway and define roadblocks towards management.

The objectives of this work platform by the data controller Health IQ are the following:

Objective 1: Vantage system and associated support: Provide data for the Vantage platform to allow the function of underlying analytics modules.

Objective 2: Research and analysis. Provide reports and analysis based on the requested datasets to support on individual requests.

Objective 3: Public access reports. Provide public reports that are in the public interest and that are freely available via the Health IQ website.

The following NHS England Data will be accessed:

- Hospital Episode Statistics Admitted Patient Care (HES APC) – necessary to calculate burden across inpatients care and rehospitalisation for conditions such as myocardial infarct and type 2 diabetes.

- Hospital Episode Statistics Accident & Emergency (HES A&E) – necessary to calculate burden across accident and emergency attendances.

- Hospital Episode Statistics Critical Care - necessary to calculate the additional burden of patients (eg: patients with myocardial infarcts and type 2 diabetes) who end up in critical care.

- Hospital Episode Statistics Outpatients (HES OP) - necessary to calculate burden for a disease (eg: myocardial infarct and type 2 diabetes) across outpatients.

- Hospital Episode Statistics Emergency Care Data Set (ECDS) - necessary to calculate burden across accident and emergency attendances.

- Diagnostic Imaging Dataset (DID) – necessary to evaluate how often patients who end up with dementia have investigations. The same applies to other chronic conditions such as axial spondyloarthritis. The diagnostic imaging dataset is required as management of conditions frequently requires imaging (CT/MRI/XR/PET). This is not included in the APC or OP or ECDS data, and would be important to 1) allow providers to assess how often they are using imaging compared to other providers in different groups (diagnosis, gender, age group) and 2) therefore evaluate whether there are any gaps in the care provision for certain groups (eg: CT scan in patients with vascular dementia).

- Mental Health Services Data Set (MHSDS) – necessary for important 3 reasons. 1) In the literature of patients with chronic diseases, mental healthcare is a strong component, but is not evaluated in the current datasets. An evaluation of patients with chronic conditions such as COPD and the overlap with mental health conditions may show differences in how the mental health aspect of chronic disease care is managed from healthcare provider to healthcare provider. 2) Mental health conditions with neuroleptic treatment is associated with metabolic syndrome resulting in higher and more severe cardiovascular disease. Assessing how these patients do in different healthcare providers where in terms of treatment pathway is important for an underserved group. 3) Patients with mental health conditions who are hospitalised are typically not recorded in APC as they attend specialist mental health units. Establishing how many patients with certain conditions that require mental health service exist for each healthcare provider and characterising them is important to query. Additionally, this would be used to show the patient pathway in different healthcare providers.

The level of the Data will be:

• Pseudonymised.

The Data will be minimised for each use in the following ways:

• Limited to data between 2018/2019 onwards to the latest available.

• Individual patient data is only available to analysts to prepare data to enter the Vantage dashboard, from where users will only have access to aggregated data with small number suppression.

• Data subjects are patients whose data is captured within HES OP, APC, A&E, ECDS, MHSDS or DID.

Health IQ Ltd is the sponsor and the data controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above. Amazon Web Services (AWS) is a data processor who provides IT hosting services to Health IQ and will store the data as contracted by Health IQ. Amazon Web Services do not have access to any of the data that Health IQ that is hosted on their infrastructure. There are no other organisations involved in this project.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(f) - the processing is necessary for the legitimate interests of the data controller or the legitimate interests of a third party, unless there is a good reason to protect the individual’s personal data which overrides those legitimate interests.

Health IQ as part of their Legitimate Interests and commercial operation will use the data to grant licenses to their Vantage tool and other reports to customer groups with an aim to support services to healthcare providers and enable those organisations to deliver better healthcare to the population. Health IQ also offer the tool to the NHS at cost, and offer free reports to the public, which are developed around topics of current relevance and published on a dedicated page on the website.

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This is in the public interest because the access to the special category data will enable Health IQ’s clients who access data via the Vantage Platform make the world healthier and safer by enabling better decision making by understanding and quantifying the burden of disease, supporting service improvement through treatment and efficiency and adding to the body of healthcare knowledge available through robust research. While these aims are carried out.

The funding is provided by Health IQ. The funding is specifically for the study described. Funding is in place on an ongoing basis. The funder(s) will have no ability to suppress or otherwise limit the publication of findings.

Patient level data will be accessed by substantive employees of Health IQ and a single contractor employed by Health IQ only, with access limited for the purposes of carrying out analysis only. Health IQ will only process that data for the purposes described above.

There is a commercial aspect to the processing, in that Health IQ sell licenses to access the Vantage Platform and other reports to customer groups listed above. Health IQ also offer the tool to the NHS at cost, and offer free reports to the public, which are developed around topics of current relevance and published on a dedicated page on the website. All the above are in an aggregate, non-identifying and small-number suppressed format.

Health IQ's current split between commercial and non-commercial (NHS providers and universities) customers is 54:46 following the recent signing of 2 large Academic Health Science Networks. Health IQ Ltd aims to sign on more non-commercial organisations to increase the NHS proportion to at least 50:50.

All outputs from the processing of HES data are always used for the improvement of patient care, whether directly or indirectly.

Commercial arrangements are in two forms, either a data-project undertaken by Health IQ and funded by the client, or a licensed based access to our Vantage Platform. The client is an organisation within the approved groups as listed in this document (objective for processing).

In the first instance, Health IQ contract with the company to undertake a defined project. All analysis is carried out by Health IQ staff on Health IQ premises and via remote access, no external individual ever has any access to patient-level data. Upon completion, Health IQ provides a report which may include data which would always be in a de-identified, aggregate and small-number suppressed form.

In the second instance, the client contracts with Health IQ on an annual license basis for access to the Vantage tool. This provides data only in a de-identified, aggregate and small-number suppressed form.

In both cases the authorised purposes by which the data can be used (as outlined in objective for processing) are incorporated into the contract and are hence legally binding upon the company.

Analysis conducted by Health IQ falls under the remit of scientific research/service evaluation and is often published in some form. Hence Health IQ are permitted to process personal data under GDPR recital 157, for the purpose of furthering scientific research in healthcare.

Health IQ’s clients use data in order to support healthcare organisations to improve the delivery of healthcare services and benefit patient care. This underlying principle of providing a benefit to healthcare is written into the client contract and is made clear at every stage. The data held under license has no value to Health IQ’s client base for the purpose of marketing (as it is de-identified), nor is it permitted to offer it to companies who do not have an underlying healthcare benefit as a reason for wanting to use it.

The following is a summary of what outputs will be produced as part of this programme of work.

Outputs relating to Objective 1 (Vantage System and Related Support):

The Vantage Platform will continue to be used by users within the list of approved organisations (outlined in ‘objective for processing’) solely for the purposes stated within this DSA. Outputs are either internal dashboards and reports within the platform or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with the HES analysis guide and this DSA.

Data will explicitly not be used for sales and marketing purposes. All queries run from the Vantage Platform are logged in the system and are hence auditable on request. An example of a planned use is Health IQ's Integrated Care Systems (ICS) Metrics Dashboard. This is a graphical presentation of key metrics as defined by NHS priorities such as waiting times, elective/non-elective care length of stay, deprivation associated mortality rates and more, which will be tracked according to the new NHS ICS structure to understand how individual localities are performing year on year as well as pre-/post- COVID-19 and against other localities. The dashboard will address the conditions covered in the Core20plus5 scheme, which aims to provide better care for patients within the 20% most deprived population. This tool is already in production.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. PROMISE (Preparing for RSV (respiratory syncytial virus) Immunizations and Surveillance in Europe) analysis is planned: This analysis will describe RSV hospital activity over time, before, during and after the COVID-19 pandemic across 5 European countries (England, Denmark, Finland, the Netherlands, Spain). It aims to improve the understanding of the effect COVID-19 had on RSV circulation through observation of changes in the associated healthcare activity, and support future public health planning. The planned manuscript will present the collated results from the 5 countries. This manuscript is under discussion for publication in 2025.

2. Anastomotic leak analysis: To understand the costs associated with anastomatic leak (AL) after left-sided colorectal surgery in England. Existing cost studies are limited or too old to be relevant to current clinical practice; avoiding AL could reduce healthcare costs for patient who undergo colorectal surgery. The analysis using HES data will be submitted for peer review publication to provide up to date results for England. This manuscript is under discussion for publication in 2025.

3. Advanced systemic mastocytosis analysis: The study aims to improve understanding of the treatment pathway, survival, and healthcare resource use associated with advanced systemic mastocytosis (ASM). A manuscript will be considered if the results generate a narrative that would be beneficial for dissemination to the relevant clinical audience: This work provides a greater understanding of the incidence/prevalence, treatment pathway, survival, and healthcare resource use associated with advanced systemic mastocytosis (ASM), a rare disorder, which is poorly researched in England. The results are intended to provide real-world data for inclusion in NICE submission for Ayvakit. The detailed reporting of the clinical and economic burden provided by this study aids policy maker evaluation of novel therapies. This has been submitted and is under discussion by NICE.

4. Graft-versus-host disease (GvHD) analysis: Currently, there is still no standard second-line therapy. HES data was used to describe the healthcare resource use and cost of patients with cGVHD after allo-HSCT and for matched controls without GVHD after allo-HSCT. The treatment and patient pathways for patients with cGVHD were also described post-diagnosis. Initial results have been presented at conference, work to draft a manuscript from this and further conference abstracts related to the patient pathway is due at COSTEM and the manuscript is under consideration by the Journal of Transplantation and Cellular Therapy.

Outputs relating to Objective 3 (Public Access Health IQ Insight Reports):

Research using retrospective data will be published in scientific journals and at scientific conferences; e.g; a poster has published in graft vs host disease at the European Haematology Congress.

Patients will be able to request and access free reports via the HealthIQ website which will be published on site (resource dependent). Several reports have already been published on the website including in diabetes and Alzheimers disease.

Health IQ will continue to publish reports for public access, either via the Health IQ website (https://www.corevitas.com/resource/nhs-public-access-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Examples of planned use:

1. Elective care recovery, tracking the difference in % admissions before COVID-19, during COVID-19 and after COVID-19

2. National, regional and ICS based inequalities report analysing key outcome measures such as non-elective admissions, excess bed days, average bed days and mortality in hospital for Core20plus 5 conditions

Reports are also made public on the social media profile of the company (on LinkedIn) which allows users to download the report. Linkedin Posts are carried out around the relevant disease days to notify social media users of research that would be relevant to them.

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

Health IQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from the use of the NHS England data. These are typical of the type of usage Health IQ customers offer to the NHS and will continue to provide (on renewal of the data).

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Multiple sclerosis (MS) infection study: The study compared healthcare associated infections (HCAI) in infusion treated patients with MS and patients with RA. The results showed similar mean number of infection-related hospitalization in MS and RA patients in the 28 days following infusion. Thankfully, the study found a low rate of HCAI among infusion treated MS and RA patients but still highlights the infection risk faced by patients who need to attend healthcare settings to receive immunosuppressive and immunomodulatory agents, and the importance of infection prevention. The results were used to generate a patient-facing tool to enable discussion on their condition and associated complications. Further analysis is required before publication can be considered.

2. Sickle cell disease (SCD) HES analysis prepared in 2022: the analysis was conducted to understand the existing burden of breakthrough haemolysis (BTH) to patients and the NHS and to help assess the cost effectiveness and budget impact of LentiGlobin treatment. The data showed a high recurrence of SCD crises which result in overnight hospitalization which effects patient wellbeing and results in a healthcare and societal burden. The data were also included in the submission for regulatory approval; having real world data to support HTA submissions aids policy makers evaluation of novel therapies.

3. Abstract, manuscript, and poster: “The direct healthcare burden associated with chronic graft-versus-host disease following allogeneic haematopoietic stem cell transplant in England: a real-world evidence analysis”: was presented as a poster at the European Hematology Association Congress 2023. A manuscript is in drafting to be submitted to Transplantation and Cellular Therapy journal, entitled “Healthcare resource utilization and associated costs in patients with chronic graft-versus-host disease post allogeneic hematopoietic stem cell transplantation in secondary healthcare settings in England. This work provides a greater understanding of the direct healthcare burden (use and cost) associated with cGVHD, for which there was previously little known in a UK context. Abstract “Chronic graft-versus-host disease following allogeneic haematopoietic stem cell transplant requires a complex multi-specialist care pathway: a real-world evidence analysis from England”: has been submitted to COSTEM Congress 2023 and illustrates the numerous healthcare visits the patients require, impacting their everyday life.

4. Poster and Manuscript: “Inequity in access to aortic valve replacement- a retrospective database study of patients in England” was presented as a poster at the EuroPCR conference in 2022. A manuscript entitled “The Impact of gender, ethnicity, and social deprivation on access to surgical or transcatheter aortic valve replacement in aortic stenosis: A retrospective database study in England” was published by OpenHeart journal in October 2023. Treatment differences by gender, ethnicity and deprivation were found among patients with AS. Public health initiatives may be required to increase clinician and public awareness of unconscious biases towards minority and vulnerable populations to ensure timely AVR for everyone. This was picked up by the broadsheets including The Guardian and highlighted treatment inequality to the public.

5. Aortic valve replacement analysis: Aortic valve replacement (AVR), either transcatheter or surgical (TAVI or SAVR), is standard care among patients with aortic stenosis (AS). Whether gender, ethnicity, and deprivation-based differences affect the provision of aortic valve intervention in England is unknown so we used HES data to investigate. The results of this analysis have been published in a peer review manuscript.

Relating to Objective 3 (Public Access Health IQ Insight Reports):

Published reports are listed here: (https://www.corevitas.com/resource/nhs-public-access-reports):

1. “Utilising real world data to uncover health inequities in type 2 diabetes” looks at patients with type 2 diabetes, grouped by ICD-10 E11 and broken down by age, gender and ethnicity with socioeconomic status grouped in the lower five deciles of IMD or the upper five deciles, representing the most and least deprived populations.

2. “Stroke disease awareness” looks at patient counts by age group, patient counts by gender, procedures by patient count and primary diagnosis by patient count

3. “Urology in emergency care” looks at patients with a diagnosis of kidney disease and broken down by admission counts, chief complaint, discharge status and discharge destination

4.“Admissions by provider trusts in England for total excision of colon (H05), excision of sigmoid colon (H10) and other excision of colon (H11)” looks at the variation in admissions broken down by NHS trust across England

5. Dementia awareness looks at patient counts by age group, primary diagnosis by admission and time from first admission and diagnosis of dementia to death. Its role was to highlight outcomes faced by patients with dementia when they were in hospital.

Health IQ requires access to NHS England Data for the purpose of providing data-based insight, Health IQ produce tools and reports services to clients in the health sector.

Health IQ seeks to process data held by NHS England to conduct benchmarking, service provision analysis and querying patient pathways and the burden of disease. This use of the data aims to provide valuable insights into regional differences in access to treatment across England in the form of static reports or through an interactive dashboard called the ‘Vantage Platform’.

Licenses to this interactive Vantage dashboard would enable users to query the data and receive outputs as an aggregate, non-identifying and small-number suppressed format. Additionally, reports based on outputs from the tool. Standalone research utilising the same data can also be provided on a commercial basis and consist of additional analysis and stratification involving more complicated statistical methodology such as matching and stratification while still maintaining the same level of small number suppression.

Health IQ will offer the tool to customer groups listed below. Reports that are thought to be of interest to the public through queries to the website, or through interaction with members of the public will be provided free of charge and published on the Health IQ website.

The Data will be used to provide services to the following types of clients:

• NHS Users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

• Commissioning Support Units (CSUs)

• Governmental organisations (NHS England, DH, NICE, AHSNs).

• Social care (Local Authorities, Health & Wellbeing Boards).

• Charities, not-for-profit organisations and academic institutions.

• Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

• Universities

The Data will be used to provide the following services:

• Benchmarking a healthcare provider (ICS or hospital or groups) against another ICS/hospital/group/national average/previous year

• Querying and defining populations within an ICS/hospital/group (patients with a diagnosis, number of procedures, which can be subdivided by age group/gender.

• Service Planning and Improvement: Using the data to perform a service evaluation including gathering evidence for value for money, effectiveness, or creating a baseline to measure change.

• Care pathway analysis: Using the data to create a patient pathway and define roadblocks towards management.

The objectives of this work platform by the data controller Health IQ are the following:

Objective 1: Vantage system and associated support: Provide data for the Vantage platform to allow the function of underlying analytics modules.

Objective 2: Research and analysis. Provide reports and analysis based on the requested datasets to support on individual requests.

Objective 3: Public access reports. Provide public reports that are in the public interest and that are freely available via the Health IQ website.

The following NHS England Data will be accessed:

- Hospital Episode Statistics Admitted Patient Care (HES APC) – necessary to calculate burden across inpatients care and rehospitalisation for conditions such as myocardial infarct and type 2 diabetes.

- Hospital Episode Statistics Accident & Emergency (HES A&E) – necessary to calculate burden across accident and emergency attendances.

- Hospital Episode Statistics Critical Care - necessary to calculate the additional burden of patients (eg: patients with myocardial infarcts and type 2 diabetes) who end up in critical care.

- Hospital Episode Statistics Outpatients (HES OP) - necessary to calculate burden for a disease (eg: myocardial infarct and type 2 diabetes) across outpatients.

- Hospital Episode Statistics Emergency Care Data Set (ECDS) - necessary to calculate burden across accident and emergency attendances.

This application seeks the amendment for Health IQ to access the following additional datasets.

- Diagnostic Imaging Dataset (DID) – necessary to evaluate how often patients who end up with dementia have investigations. The same applies to other chronic conditions such as axial spondyloarthritis. The diagnostic imaging dataset is required as management of conditions frequently requires imaging (CT/MRI/XR/PET). This is not included in the APC or OP or ECDS data, and would be important to 1) allow providers to assess how often they are using imaging compared to other providers in different groups (diagnosis, gender, age group) and 2) therefore evaluate whether there are any gaps in the care provision for certain groups (eg: CT scan in patients with vascular dementia).

- Mental Health Services Data Set (MHSDS) – necessary for important 3 reasons. 1) In the literature of patients with chronic diseases, mental healthcare is a strong component, but is not evaluated in the current datasets. An evaluation of patients with chronic conditions such as COPD and the overlap with mental health conditions may show differences in how the mental health aspect of chronic disease care is managed from healthcare provider to healthcare provider. 2) Mental health conditions with neuroleptic treatment is associated with metabolic syndrome resulting in higher and more severe cardiovascular disease. Assessing how these patients do in different healthcare providers where in terms of treatment pathway is important for an underserved group. 3) Patients with mental health conditions who are hospitalised are typically not recorded in APC as they attend specialist mental health units. Establishing how many patients with certain conditions that require mental health service exist for each healthcare provider and characterising them is important to query. Additionally, this would be used to show the patient pathway in different healthcare providers.

The level of the Data will be:

• Pseudonymised.

The Data will be minimised for each use in the following ways:

• Limited to data between 2018/2019 onwards to the latest available.

• Individual patient data is only available to analysts to prepare data to enter the Vantage dashboard, from where users will only have access to aggregated data with small number suppression.

• Data subjects are patients whose data is captured within HES OP, APC, A&E, ECDS, MHSDS or DID.

Health IQ Ltd is the sponsor and the data controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above. Amazon Web Services (AWS) is a data processor who provides IT hosting services to Health IQ and will store the data as contracted by Health IQ. Amazon Web Services do not have access to any of the data that Health IQ that is hosted on their infrastructure. There are no other organisations involved in this project.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(f) - the processing is necessary for the legitimate interests of the data controller or the legitimate interests of a third party, unless there is a good reason to protect the individual’s personal data which overrides those legitimate interests.

Health IQ as part of their Legitimate Interests and commercial operation will use the data to grant licenses to their Vantage tool and other reports to customer groups with an aim to support services to healthcare providers and enable those organisations to deliver better healthcare to the population. Health IQ also offer the tool to the NHS at cost, and offer free reports to the public, which are developed around topics of current relevance and published on a dedicated page on the website.

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This is in the public interest because the access to the special category data will enable Health IQ’s clients who access data via the Vantage Platform make the world healthier and safer by enabling better decision making by understanding and quantifying the burden of disease, supporting service improvement through treatment and efficiency and adding to the body of healthcare knowledge available through robust research. While these aims are carried out.

The funding is provided by Health IQ. The funding is specifically for the study described. Funding is in place on an ongoing basis. The funder(s) will have no ability to suppress or otherwise limit the publication of findings.

Patient level data will be accessed by substantive employees of Health IQ only. Health IQ will only process that data for the purposes described above.

There is a commercial aspect to the application, in that Health IQ sell licenses to access the Vantage Platform and other reports to customer groups listed in the objectives section of this application. Health IQ also offer the tool to the NHS at cost, and offer free reports to the public, which are developed around topics of current relevance and published on a dedicated page on the website. All the above are in an aggregate, non-identifying and small-number suppressed format.

Health IQ's current split between commercial and non-commercial (NHS providers and universities) customers is 54:46 following the recent signing of 2 large Academic Health Science Networks. Health IQ Ltd aims to sign on more non-commercial organisations to increase the NHS proportion to at least 50:50.

All outputs from the processing of HES data are always used for the improvement of patient care, whether directly or indirectly.

Commercial arrangements are in two forms, either a data-project undertaken by Health IQ and funded by the client, or a licensed based access to our Vantage Platform. The client is an organisation within the approved groups as listed in this document (objective for processing).

In the first instance, Health IQ contract with the company to undertake a defined project. All analysis is carried out by Health IQ staff on Health IQ premises, no external individual ever has any access to patient-level data. Upon completion, Health IQ provides a report which may include data which would always be in a de-identified, aggregate and small-number suppressed form.

In the second instance, the client contracts with Health IQ on an annual license basis for access to the Vantage tool. This provides data only in a de-identified, aggregate and small-number suppressed form.

In both cases the authorised purposes by which the data can be used (as outlined in objective for processing) are incorporated into the contract and are hence legally binding upon the company.

Analysis conducted by Health IQ falls under the remit of scientific research/service evaluation and is often published in some form. Hence Health IQ are permitted to process personal data under GDPR recital 157, for the purpose of furthering scientific research in healthcare.

Health IQ’s clients use data in order to support healthcare organisations to improve the delivery of healthcare services and benefit patient care. This underlying principle of providing a benefit to healthcare is written into the client contract and is made clear at every stage. The data held under license has no value to Health IQ’s client base for the purpose of marketing (as it is de-identified), nor is it permitted to offer it to companies who do not have an underlying healthcare benefit as a reason for wanting to use it.

The following is a summary of what outputs will be produced as part of this programme of work.

Outputs relating to Objective 1 (Vantage System and Related Support):

The Vantage Platform will continue to be used by users within the list of approved organisations (outlined in ‘objective for processing’) solely for the purposes stated within this application. Outputs are either internal dashboards and reports within the platform or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with the HES analysis guide and this agreement.

Data will explicitly not be used for sales and marketing purposes. All queries run from the Vantage Platform are logged in the system and are hence auditable on request. An example of a planned use is Health IQ's Integrated Care Systems (ICS) Metrics Dashboard. This is a graphical presentation of key metrics as defined by NHS priorities such as waiting times, elective/non-elective care length of stay, deprivation associated mortality rates and more, which will be tracked according to the new NHS ICS structure to understand how individual localities are performing year on year as well as pre-/post- COVID-19 and against other localities. The dashboard will address the conditions covered in the Core20plus5 scheme, which aims to provide better care for patients within the 20% most deprived population. This tool is already in production.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. PROMISE (Preparing for RSV (respiratory syncytial virus) Immunizations and Surveillance in Europe) analysis is planned: This analysis will describe RSV hospital activity over time, before, during and after the COVID-19 pandemic across 5 European countries (England, Denmark, Finland, the Netherlands, Spain). It aims to improve the understanding of the effect COVID-19 had on RSV circulation through observation of changes in the associated healthcare activity, and support future public health planning. The planned manuscript will present the collated results from the 5 countries. This manuscript is under discussion for publication in 2025.

2. Anastomotic leak analysis: To understand the costs associated with anastomatic leak (AL) after left-sided colorectal surgery in England. Existing cost studies are limited or too old to be relevant to current clinical practice; avoiding AL could reduce healthcare costs for patient who undergo colorectal surgery. The analysis using HES data will be submitted for peer review publication to provide up to date results for England. This manuscript is under discussion for publication in 2025.

3. Advanced systemic mastocytosis analysis: The study aims to improve understanding of the treatment pathway, survival, and healthcare resource use associated with advanced systemic mastocytosis (ASM). A manuscript will be considered if the results generate a narrative that would be beneficial for dissemination to the relevant clinical audience: This work provides a greater understanding of the incidence/prevalence, treatment pathway, survival, and healthcare resource use associated with advanced systemic mastocytosis (ASM), a rare disorder, which is poorly researched in England. The results are intended to provide real-world data for inclusion in NICE submission for Ayvakit. The detailed reporting of the clinical and economic burden provided by this study aids policy maker evaluation of novel therapies. This has been submitted and is under discussion by NICE.

4. Graft-versus-host disease (GvHD) analysis: Currently, there is still no standard second-line therapy. HES data was used to describe the healthcare resource use and cost of patients with cGVHD after allo-HSCT and for matched controls without GVHD after allo-HSCT. The treatment and patient pathways for patients with cGVHD were also described post-diagnosis. Initial results have been presented at conference, work to draft a manuscript from this and further conference abstracts related to the patient pathway is due at COSTEM and the manuscript is under consideration by the Journal of Transplantation and Cellular Therapy.

Outputs relating to Objective 3 (Public Access Health IQ Insight Reports):

Research using retrospective data will be published in scientific journals and at scientific conferences; e.g; a poster has published in graft vs host disease at the European Haematology Congress.

Patients will be able to request and access free reports via the HealthIQ website which will be published on site (resource dependent). Several reports have already been published on the website including in diabetes and Alzheimers disease.

Health IQ will continue to publish reports for public access, either via the Health IQ website (https://www.corevitas.com/resource/nhs-public-access-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Examples of planned use:

1. Elective care recovery, tracking the difference in % admissions before COVID-19, during COVID-19 and after COVID-19

2. National, regional and ICS based inequalities report analysing key outcome measures such as non-elective admissions, excess bed days, average bed days and mortality in hospital for Core20plus 5 conditions

Reports are also made public on the social media profile of the company (on LinkedIn) which allows users to download the report. Linkedin Posts are carried out around the relevant disease days to notify social media users of research that would be relevant to them.

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

Health IQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from the use of the NHS England data. These are typical of the type of usage Health IQ customers offer to the NHS and will continue to provide (on renewal of the data).

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Multiple sclerosis (MS) infection study: The study compared healthcare associated infections (HCAI) in infusion treated patients with MS and patients with RA. The results showed similar mean number of infection-related hospitalization in MS and RA patients in the 28 days following infusion. Thankfully, the study found a low rate of HCAI among infusion treated MS and RA patients but still highlights the infection risk faced by patients who need to attend healthcare settings to receive immunosuppressive and immunomodulatory agents, and the importance of infection prevention. The results were used to generate a patient-facing tool to enable discussion on their condition and associated complications. Further analysis is required before publication can be considered.

2. Sickle cell disease (SCD) HES analysis prepared in 2022: the analysis was conducted to understand the existing burden of breakthrough haemolysis (BTH) to patients and the NHS and to help assess the cost effectiveness and budget impact of LentiGlobin treatment. The data showed a high recurrence of SCD crises which result in overnight hospitalization which effects patient wellbeing and results in a healthcare and societal burden. The data were also included in the submission for regulatory approval; having real world data to support HTA submissions aids policy makers evaluation of novel therapies.

3. Abstract, manuscript, and poster: “The direct healthcare burden associated with chronic graft-versus-host disease following allogeneic haematopoietic stem cell transplant in England: a real-world evidence analysis”: was presented as a poster at the European Hematology Association Congress 2023. A manuscript is in drafting to be submitted to Transplantation and Cellular Therapy journal, entitled “Healthcare resource utilization and associated costs in patients with chronic graft-versus-host disease post allogeneic hematopoietic stem cell transplantation in secondary healthcare settings in England. This work provides a greater understanding of the direct healthcare burden (use and cost) associated with cGVHD, for which there was previously little known in a UK context. Abstract “Chronic graft-versus-host disease following allogeneic haematopoietic stem cell transplant requires a complex multi-specialist care pathway: a real-world evidence analysis from England”: has been submitted to COSTEM Congress 2023 and illustrates the numerous healthcare visits the patients require, impacting their everyday life.

4. Poster and Manuscript: “Inequity in access to aortic valve replacement- a retrospective database study of patients in England” was presented as a poster at the EuroPCR conference in 2022. A manuscript entitled “The Impact of gender, ethnicity, and social deprivation on access to surgical or transcatheter aortic valve replacement in aortic stenosis: A retrospective database study in England” was published by OpenHeart journal in October 2023. Treatment differences by gender, ethnicity and deprivation were found among patients with AS. Public health initiatives may be required to increase clinician and public awareness of unconscious biases towards minority and vulnerable populations to ensure timely AVR for everyone. This was picked up by the broadsheets including The Guardian and highlighted treatment inequality to the public.

5. Aortic valve replacement analysis: Aortic valve replacement (AVR), either transcatheter or surgical (TAVI or SAVR), is standard care among patients with aortic stenosis (AS). Whether gender, ethnicity, and deprivation-based differences affect the provision of aortic valve intervention in England is unknown so we used HES data to investigate. The results of this analysis have been published in a peer review manuscript.

Relating to Objective 3 (Public Access Health IQ Insight Reports):

Published reports are listed here: (https://www.corevitas.com/resource/nhs-public-access-reports):

1. “Utilising real world data to uncover health inequities in type 2 diabetes” looks at patients with type 2 diabetes, grouped by ICD-10 E11 and broken down by age, gender and ethnicity with socioeconomic status grouped in the lower five deciles of IMD or the upper five deciles, representing the most and least deprived populations.

2. “Stroke disease awareness” looks at patient counts by age group, patient counts by gender, procedures by patient count and primary diagnosis by patient count

3. “Urology in emergency care” looks at patients with a diagnosis of kidney disease and broken down by admission counts, chief complaint, discharge status and discharge destination

4.“Admissions by provider trusts in England for total excision of colon (H05), excision of sigmoid colon (H10) and other excision of colon (H11)” looks at the variation in admissions broken down by NHS trust across England

5. Dementia awareness looks at patient counts by age group, primary diagnosis by admission and time from first admission and diagnosis of dementia to death. Its role was to highlight outcomes faced by patients with dementia when they were in hospital.

Health iQ Limited (Health iQ Ltd) is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

In addition to future monthly (HES APC, HES OP, ECDS) and quarterly (HES CC) releases of data, Health iQ Ltd will retain up to 5-years of HES APC, HES OP, HES CC, HES A&E, and ECDS data previously disseminated by NHS England for the purposes of these legitimate interests and processes data under this agreement under Articles 6(1)(f) and 9(2)(j) of GDPR.

Health iQ Ltd will continue to process the data in order to conduct analysis that will support the optimal delivery of healthcare as a whole, and hence be a benefit to the individuals and all patients. This analysis helps in a variety of ways including:

• Understanding the prevalence and burden of conditions, so that budgeting priorities can be appropriately set.

• Understanding where good practice lies and what it looks like.

• To conduct new research into disease areas, resulting in publications which provide new knowledge for the benefit of all.

Access to Patient-level data is required in order to accurately conduct the above types of analysis, without this Health iQ Ltd could not conduct the level of research needed to provide new insights into diseases or treatment pathways, and the potential benefit to healthcare of this research would not be realised.

Health iQ Ltd have carried out a Legitimate Impact Assessment using the ICO template and has been reviewed by NHS England. NHS England concluded that Health iQ Ltd can rely on legitimate interests for this processing.

1. Vantage System and Related Support

Health iQ Ltd will use the HES (Admitted Patient Care (APC), Outpatient (OP), Accident & Emergency (A&E)/Emergency Care Data Set (ECDS) & Critical Care (CC)) datasets.

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), Private Healthcare Providers).

2. Commissioning Organisations (eg CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the permitted purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ Ltd and users, as well as terms of use which every user must agree to when first logging in. Processing of the data is restricted to within England and Wales, but all outputs are aggregated with small-numbers suppressed in line with the HES analysis guide. Vantage tool users, including those outside of England & Wales, will only have access to aggregated data with small numbers suppressed within the Vantage tool.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ Ltd insist that all users of the tool undergo information governance training by a Health iQ Ltd trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

Users of the Vantage tool can only see aggregated data with small numbers suppressed and do not at any stage have access to the underlying data.

Health iQ Ltd have added a function in the Vantage tool that allows longitudinal tracking of patients. This is useful in measuring the impact of an intervention in a treatment pathway, for example looking at the activity of a group of patients before and after a surgical procedure, to demonstrate the reduction in healthcare burden after having the surgery. The functionality requires sufficient longitudinal history to have value, and hence Health IQ Ltd require 5 years of data plus current in the tool (ie a maximum of 6 years).

This length of data is justified by the increased scope for data minimisation enabled by Health iQ Ltd's new functionality, ie by selecting a specific cohort of patients users are not looking at large populations of patients but only a specific group who are relevant to the study in question. For example, when looking at the disease burden of Diabetes, one cannot only identify patients who are coded explicitly with the condition but track these patients longitudinally over time to capture their true burden. This allows a much more accurate representation of the cost burden of such patients, which in turn is useful when submitting an HTA application to NICE.

Health iQ Ltd have considered ways in which to minimise the data further against the NHS England Minimisation Standard and have concluded that all minimisation possibilities have been considered.

2. Reports, Studies and Analysis

Health iQ Ltd will use the HES (APC, OP, A&E, ECDS & CC) data for this purpose.

Health iQ Ltd will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this Data Sharing Agreement. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through contractual agreements which ensure the usage of the data is in line with this Data Sharing Agreement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

In order for Health iQ Ltd to take full advantage of this service, 5 years (plus current year) across the 4 HES datasets (APC, OP, A&E , ECDS, and CC) is required.

3. Public Access ‘Health iQ Ltd Insight’ Reports

Health iQ will use the HES (APC, OP, A&E, ECDS & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ Ltd website. The first two of these have been published and are available to view on the Health iQ Ltd website. Health IQ aim to produce a new report each quarter.

Health iQ Ltd is the data controller who also processes the data for these purposes. No other organisations process the data for these purposes.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of all outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with the HES analysis guide and this agreement.

Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. An example of a planned use is Health iQ Ltd's Integrated Care Systems (ICS) Metrics Dashboard. This is a graphical presentation of key metrics as defined by NHS priorities such as waiting times, elective/non-elective care length of stay, deprivation associated mortality rates and more, which will be tracked according to the new NHS ICS structure to understand how individual localities are performing year on year as well as pre-/post- COVID-19 and against other localities. The dashboard will address the conditions covered in the Core20plus5 scheme, which aims to provide better care for patients within the 20% most deprived population.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. PROMISE (Preparing for RSV Immunizations and Surveillance in Europe) analysis is planned: This analysis will describe RSV hospital activity over time, before, during and after the COVID-19 pandemic across 5 European countries (England, Denmark, Finland, the Netherland, Spain). It aims to improve the understanding of the effect COVID-19 had on RSV circulation through observation of changes in the associated healthcare activity, and support future public health planning. The planned manuscript will present the collated results from the 5 countries.

2. Anastomotic leak analysis: To understand the costs associated with anastomatic leak (AL) after left-sided colorectal surgery in England. Existing cost studies are limited or too old to be relevant to current clinical practice; avoiding AL could reduce healthcare costs for patient who undergo colorectal surgery. The analysis using HES data will be submitted for peer review publication to provide up to date results for England.

3. Advanced systemic mastocytosis analysis: The study aims to improve understanding of the treatment pathway, survival, and healthcare resource use associated with Aavanced systemic mastocytosis (ASM). A manuscript will be considered if the results generate a narrative that would be beneficial for dissemination to the relevant clinical audience: This work provides a greater understanding of the incidence/prevalence, treatment pathway, survival, and healthcare resource use associated with advanced systemic mastocytosis (ASM), a rare disorder, which is poorly researched in England. The results are intended to provide real-world data for inclusion in NICE submission for Ayvakit. The detailed reporting of the clinical and economic burden provided by this study aids policy maker evaluation of novel therapies.

4. Graft-versus-host disease (GvHD) analysis: Currently, there is still no standard second-line therapy. HES data was used to describe the healthcare resource use and cost of patients with cGVHD after allo-HSCT and for matched controls without GVHD after allo-HSCT. The treatment and patient pathways for patients with cGVHD were also described post-diagnosis. Initial results have been presented at conference, work to draft a manuscript from this and further conference abstracts related to the patient pathway will soon be completed.

5. Aortic valve replacement analysis: Aortic valve replacement (AVR), either transcatheter or surgical (TAVI or SAVR), is standard care among patients with aortic stenosis (AS). Whether gender, ethnicity, and deprivation-based differences affect the provision of aortic valve intervention in England is unknown so we used HES data to investigate. The results of this analysis are due to be published in a peer review manuscript.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (https://www.corevitas.com/resource/nhs-public-access-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Examples of planned use:

1. Elective care recovery, tracking the difference in % admissions before COVID-19, during COVID-19 and after COVID-19

2. National, regional and ICS based inequalities report analysing key outcome measures such as non-elective admissions, excess bed days, average bed days and mortality in hospital for Core20plus 5 conditions

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide

Health iQ Ltd has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage Health iQ Ltd customers offer to the NHS. Health iQ Ltd have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Multiple sclerosis (MS) infection study: The study compared healthcare associated infections (HCAI) in infusion treated patients with MS and patients with RA. The results showed similar mean number of infection-related hospitalization in MS and RA patients in the 28 days following infusion. Thankfully, the study found a low rate of HCAI among infusion treated MS and RA patients but still highlights the infection risk faced by patients who need to attend healthcare settings to receive immunosuppressive and immunomodulatory agents, and the importance of infection prevention. The results were used to generate a patient-facing tool to enable discussion on their condition and associated complications. Further analysis is required before publication can be considered.

2. Sickle cell disease (SCD) HES analysis prepared in 2022: the analysis was conducted to understand the existing burden of breakthrough haemolysis (BTH) to patients and the NHS and to help assess the cost effectiveness and budget impact of LentiGlobin treatment. The data showed a high recurrence of SCD crises which result in overnight hospitalization which effects patient wellbeing and results in a healthcare and societal burden. The data were also included in the submission for regulatory approval; having real world data to support HTA submissions aids policy makers evaluation of novel therapies.

3. Abstract, manuscript, and poster: “The direct healthcare burden associated with chronic graft-versus-host disease following allogeneic haematopoietic stem cell transplant in England: a real-world evidence analysis”: was presented as a poster at the European Hematology Association Congress 2023. A manuscript is in drafting to be submitted to Haematologica journal, entitled “Healthcare resource utilization and associated costs in patients with chronic graft-versus-host disease post allogeneic hematopoietic stem cell transplantation in secondary healthcare settings in England. This work provides a greater understanding of the direct healthcare burden (use and cost) associated with cGVHD, for which there was previously little known in a UK context. Abstract “Chronic graft-versus-host disease following allogeneic haematopoietic stem cell transplant requires a complex multi-specialist care pathway: a real-world evidence analysis from England”: has been submitted to COSTEM Congress 2023 and illustrates the numerous healthcare visits the patients require, impacting their everyday life.

4. Poster and Manuscript: “Inequity in access to aortic valve replacement- a retrospective database study of patients in England” was presented as a poster at the EuroPCR conference in 2022. A manuscript entitled “The Impact of gender, ethnicity, and social deprivation on access to surgical or transcatheter aortic valve replacement in aortic stenosis: A retrospective database study in England” is currently under review by OpenHeart journal. Treatment differences by gender, ethnicity and deprivation were found among patients with AS. Public health initiatives may be required to increase clinician and public awareness of unconscious biases towards minority and vulnerable populations to ensure timely AVR for everyone.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (https://www.corevitas.com/resource/nhs-public-access-reports):

1. “Utilising real world data to uncover health inequities in type 2 diabetes” looks at patients with type 2 diabetes, grouped by ICD-10 E11 and broken down by age, gender and ethnicity with socioeconomic status grouped in the lower five deciles of IMD or the upper five deciles, representing the most and least deprived populations.

2. “Stroke disease awareness” looks at patient counts by age group, patient counts by gender, procedures by patient count and primary diagnosis by patient count

3. “Urology in emergency care” looks at patients with a diagnosis of kidney disease and broken down by admission counts, chief complaint, discharge status and discharge destination

4.“Admissions by provider trusts in England for total excision of colon (H05), excision of sigmoid colon (H10) and other excision of colon (H11)” looks at the variation in admissions broken down by NHS trust across England

Health iQ Limited (Health iQ Ltd) is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health iQ Ltd wishes to retain the previously disseminated data from NHS Digital for the purposes of these legitimate interests and processes data under this agreement under Articles 6(1)(f) and 9(2)(j) of GDPR.

Health iQ Ltd wish to continue to process the data in order to conduct analysis that will support the optimal delivery of healthcare as a whole, and hence be a benefit to the individuals and all patients. This analysis helps in a variety of ways including:

• Understanding the prevalence and burden of conditions, so that budgeting priorities can be appropriately set.

• Understanding where good practice lies and what it looks like.

• To conduct new research into disease areas, resulting in publications which provide new knowledge for the benefit of all.

The retention of Patient-level data is required in order to accurately conduct the above types of analysis, without this Health iQ Ltd could not conduct the level of research needed to provide new insights into diseases or treatment pathways, and the potential benefit to healthcare of this research would not be realised.

Health iQ Ltd have carried out a Legitimate Impact Assessment using the ICO template and has been reviewed by NHS Digital. NHS Digital concluded that Health iQ Ltd can rely on legitimate interests for this processing.

1. Vantage System and Related Support

Health iQ Ltd will use the HES (Admitted Patient Care (APC), Outpatient (OP), Accident & Emergency (A&E)/Emergency Care Data Set (ECDS) & Critical Care (CC)) datasets.

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

For avoidance of doubt, the critical care speciality detail comes from the HES Admitted Patient Care dataset. The HES Critical Care dataset is not used.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), Private Healthcare Providers).

2. Commissioning Organisations (eg CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ Ltd and users, as well as terms of use which every user must agree to when first logging in. Processing of the data is restricted to within England and Wales, but all outputs are aggregated with small-numbers suppressed in line with the HES analysis guide. If users are overseas, they will only ever see aggregated data with small numbers suppressed within the Vantage tool.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ Ltd insist that all users of the tool undergo information governance training by a Health iQ Ltd trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

Users of the Vantage tool can only see aggregated data with small numbers suppressed and do not at any stage have a view of the underlying data.

Health iQ Ltd have added a function in the Vantage tool that allows longitudinal tracking of patients. This is useful in measuring the impact of an intervention in a treatment pathway, for example looking at the activity of a group of patients before and after a surgical procedure, to demonstrate the reduction in healthcare burden after having the surgery. The functionality requires sufficient longitudinal history to have value, and hence Health IQ Ltd require 5 years of data plus current in the tool (ie a maximum of 6 years).

This length of data is justified by the increased scope for data minimisation enabled by Health iQ Ltd's new functionality, ie by selecting a specific cohort of patients users are not looking at large populations of patients but only a specific group who are relevant to the study in question. For example, when looking at the disease burden of Diabetes, one cannot only identify patients who are coded explicitly with the condition but track these patients longitudinally over time to capture their true burden. This allows a much more accurate representation of the cost burden of such patients, which in turn is useful when submitting an HTA application to NICE.

Health iQ Ltd have considered ways in which to minimise the data further against the NHS Digital Minimisation Standard and have concluded that all minimisation possibilities have been considered.

2. Reports, Studies and Analysis

Health iQ Ltd will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

Health iQ Ltd will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this Data Sharing Agreement. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through contractual agreements which ensure the usage of the data is in line with this Data Sharing Agreement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

In order for Health iQ Ltd to take full advantage of this service, 5 years (plus current year) across the 4 HES datasets (APC, OP, AE (ECDS), and CC) is required.

3. Public Access ‘Health iQ Ltd Insight’ Reports

Health iQ will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ Ltd website. The first two of these have been published and are available to view on the Health iQ Ltd website. Health IQ aim to produce a new report each quarter.

Health iQ Ltd is the data controller who also processes the data for these purposes. No other organisations process the data for these purposes.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement.

Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. An example of a planned use is Health iQ Ltd's Health inequalities dashboard. This is a graphical presentation of key health inequality indications such as ethnicity, gender, age and IMD Deprivation scores combined with outcome metrics in specific disease areas such as non-elective admissions, number of comorbidities, length of stay and more. The dashboard focuses on trends and variations in Integrated Care systems. The aim is to help identify variation in health inequalities and support ICS’s on their mission to bridge the gap and speaks to the NHS's Long Term Plan, which calls for action on prevention and health inequalities.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. MS Infection Study due to be published in 2023: The study aims to describe the characteristics and healthcare resource use of infused MS and RA patients, and to compare the risk and cost burden of these patients for HCAI admissions within 28 days of an infusion.

2. BT HES Study due to published in 2023: To describe the demographics, clinical characteristics, healthcare resource use, tariffs, overall survival and clinical outcomes associated with patients with a beta thalassemia who have undergone a blood transfusion and to describe the healthcare resource utilisation and clinical outcomes of transfusion dependent and non-transfusion dependent beta thalassemia patients within England.

3. MD HES Study due to be published in 2023: To describe the demographics, clinical characteristics, healthcare resource use, tariffs, overall survival and clinical outcomes associated with patients with a myelodysplastic syndrome.

4. SCD HES Study due to be published in 2023: the study was conducted to understand the existing burden of Breakthrough Hemolysis (BTH) to patients and the NHS and to help assess the cost effectiveness and budget impact of LentiGlobin treatment. The anticipated benefit to healthcare from this analysis is to contribute to the likelihood that new patients for BTH will be available to NHS patients in UK.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Examples of planned use:

1. Trends in child and adolescent activity in mental health hospitals

2. Incidence of dementia by ethnicity

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide

Health iQ Ltd has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage Health iQ Ltd customers offer to the NHS. Health iQ Ltd have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Abstracts: "The prevalence and clinical profile of atopic dermatitis in England” was presented at The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference and "Healthcare resource use of moderate to severe atopic dermatitis in England: A 10-year national study" was presented at The European Society for Dermatological Research (ESDR). This study highlights the prevalence and economic burden, in terms of primary and secondary healthcare services, of atopic dermatitis. Direct healthcare resource use, and indirect, increased with atopic dermatitis severity. By quantifying the economic burden associated with atopic dermatitis, clinical management should focus on interventions that reduce the severity of the condition thereby improving the impact that atopic dermatitis has on individual patients.

2. Manuscript & Poster: "The burden of meningococcal disease in England from 2014 to 2019: A five-year study using healthcare resource dataset".

This was a retrospective study using HES data to assess the healthcare resource use of meningococcal disease in England over a 5-year period demonstrating that the number of meningococcal disease hospital admissions decreased over the 5-year period from 2014 to 2019. However, over the same time period, the length of meningococcal disease hospital stays increased, possibly signalling an increase in severity of observed cases. This emphasises the importance of meningococcal vaccination, with uptake encouraged by healthcare provisions, and early detection of infection after patient presentation. Poster was presented at the National Immunization Conference

3. Poster: "The health system burden of selected vaccine-preventable illnesses on secondary care in England: a five-year study using an administrative healthcare dataset", presented at The International Society for Pharmacoeconomics and Outcomes Research (ISPOR). The study included 75,553 patients. Among the selected conditions, Hib and hepatitis B contributed the most to the overall cost burden, in excess of £490m. The study has demonstrated that although patients that present with a vaccine-preventable disease continue to impose a large burden on NHS resources, there is potential to reduce this cost burden. This could be achieved by optimising vaccination schedules and ensuring that high vaccine coverage rates are maintained to improve public health and reduce NHS burden.

4. Poster: "The Prevalence and Patient Outcomes of Adult Primary Hypercholesterolaemia and Dyslipidaemia in the UK". Presented at The European Society of Cardiology (ESC). The annual prevalence of primary hypercholesterolemia and mixed dyslipidemia increased from 14.0% prior to 2009 to 24.1% by 2019. The prevalence of primary hypercholesterolemia and mixed dyslipidemia has increasing likely due to more systematic identification. A large proportion of patients with primary hypercholesterolemia and mixed dyslipidemia are of high and very high cardiovascular risk, remain suboptimally treated in terms of lipid lowering, and may experience cardiovascular events with associated non-negligible clinical and economic sequelae. Despite intensive LDL-C-lowering recommendations, these do not translate in clinical practice to the wider population.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. The "Covid-19 effect: Examining the impact on elective and emergency admissions" looks at the continuing effect of the Covid-19 pandemic on non-covid hospital admissions. Patient numbers are tracked monthly by elective and non-elective admissions and broken down by age, gender and by hospital trust.

2. The "Long-Covid Research Report: Exploring the characteristics of patients with post-covid syndrome" analyses patients in England whose medical records indicated consultations or positive tests for Covid-19 or post-Covid syndrome.

3. The "Continuing effect of Covid-19: Examining the impact on elective and emergency admissions" details the continuing effect of the Covid-19 pandemic on non-covid hospital admissions. Patient numbers are tracked monthly by elective and non-elective admissions and broken down by age, gender and by hospital trust.

Health iQ Limited (Health iQ Ltd) is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health iQ Ltd wishes to retain the previously disseminated data from NHS Digital for the purposes of these legitimate interests and processes data under this agreement under Articles 6(1)(f) and 9(2)(j) of GDPR.

Health iQ Ltd wish to continue to process the data in order to conduct analysis that will support the optimal delivery of healthcare as a whole, and hence be a benefit to the individuals and all patients. This analysis helps in a variety of ways including:

• Understanding the prevalence and burden of conditions, so that budgeting priorities can be appropriately set.

• Understanding where good practice lies and what it looks like.

• To conduct new research into disease areas, resulting in publications which provide new knowledge for the benefit of all.

The retention of Patient-level data is required in order to accurately conduct the above types of analysis, without this Health iQ Ltd could not conduct the level of research needed to provide new insights into diseases or treatment pathways, and the potential benefit to healthcare of this research would not be realised.

Health iQ Ltd have carried out a Legitimate Impact Assessment using the ICO template and has been reviewed by NHS Digital. NHS Digital concluded that Health iQ Ltd can rely on legitimate interests for this processing.

1. Vantage System and Related Support

Health iQ Ltd will use the HES (Admitted Patient Care (APC), Outpatient (OP), Accident & Emergency (A&E)/Emergency Care Data Set (ECDS) & Critical Care (CC)) datasets.

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

For avoidance of doubt, the critical care speciality detail comes from the HES Admitted Patient Care dataset. The HES Critical Care dataset is not used.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), Private Healthcare Providers).

2. Commissioning Organisations (eg CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ Ltd and users, as well as terms of use which every user must agree to when first logging in. Processing of the data is restricted to within England and Wales, but all outputs are aggregated with small-numbers suppressed in line with the HES analysis guide. If users are overseas, they will only ever see aggregated data with small numbers suppressed within the Vantage tool.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ Ltd insist that all users of the tool undergo information governance training by a Health iQ Ltd trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

Users of the Vantage tool can only see aggregated data with small numbers suppressed and do not at any stage have a view of the underlying data.

Health iQ Ltd have added a function in the Vantage tool that allows longitudinal tracking of patients. This is useful in measuring the impact of an intervention in a treatment pathway, for example looking at the activity of a group of patients before and after a surgical procedure, to demonstrate the reduction in healthcare burden after having the surgery. The functionality requires sufficient longitudinal history to have value, and hence Health IQ Ltd require 5 years of data plus current in the tool (ie a maximum of 6 years).

This length of data is justified by the increased scope for data minimisation enabled by Health iQ Ltd's new functionality, ie by selecting a specific cohort of patients users are not looking at large populations of patients but only a specific group who are relevant to the study in question. For example, when looking at the disease burden of Diabetes, one cannot only identify patients who are coded explicitly with the condition but track these patients longitudinally over time to capture their true burden. This allows a much more accurate representation of the cost burden of such patients, which in turn is useful when submitting an HTA application to NICE.

Health iQ Ltd have considered ways in which to minimise the data further against the NHS Digital Minimisation Standard and have concluded that all minimisation possibilities have been considered.

2. Reports, Studies and Analysis

Health iQ Ltd will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

Health iQ Ltd will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this Data Sharing Agreement. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through contractual agreements which ensure the usage of the data is in line with this Data Sharing Agreement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

In order for Health iQ Ltd to take full advantage of this service, 5 years (plus current year) across the 4 HES datasets (APC, OP, AE (ECDS), and CC) is required.

3. Public Access ‘Health iQ Ltd Insight’ Reports

Health iQ will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ Ltd website. The first two of these have been published and are available to view on the Health iQ Ltd website. Health IQ aim to produce a new report each quarter.

Health iQ Ltd is the data controller who also processes the data for these purposes. No other organisations process the data for these purposes.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement.

Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. An example of a planned use is Health iQ Ltd's Health inequalities dashboard. This is a graphical presentation of key health inequality indications such as ethnicity, gender, age and IMD Deprivation scores combined with outcome metrics in specific disease areas such as non-elective admissions, number of comorbidities, length of stay and more. The dashboard focuses on trends and variations in Integrated Care systems. The aim is to help identify variation in health inequalities and support ICS’s on their mission to bridge the gap and speaks to the NHS's Long Term Plan, which calls for action on prevention and health inequalities.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. MS Infection Study due to be published in 2023: The study aims to describe the characteristics and healthcare resource use of infused MS and RA patients, and to compare the risk and cost burden of these patients for HCAI admissions within 28 days of an infusion.

2. BT HES Study due to published in 2023: To describe the demographics, clinical characteristics, healthcare resource use, tariffs, overall survival and clinical outcomes associated with patients with a beta thalassemia who have undergone a blood transfusion and to describe the healthcare resource utilisation and clinical outcomes of transfusion dependent and non-transfusion dependent beta thalassemia patients within England.

3. MD HES Study due to be published in 2023: To describe the demographics, clinical characteristics, healthcare resource use, tariffs, overall survival and clinical outcomes associated with patients with a myelodysplastic syndrome.

4. SCD HES Study due to be published in 2023: the study was conducted to understand the existing burden of Breakthrough Hemolysis (BTH) to patients and the NHS and to help assess the cost effectiveness and budget impact of LentiGlobin treatment. The anticipated benefit to healthcare from this analysis is to contribute to the likelihood that new patients for BTH will be available to NHS patients in UK.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Examples of planned use:

1. Trends in child and adolescent activity in mental health hospitals

2. Incidence of dementia by ethnicity

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide

Health iQ Ltd has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage Health iQ Ltd customers offer to the NHS. Health iQ Ltd have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Abstracts: "The prevalence and clinical profile of atopic dermatitis in England” was presented at The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference and "Healthcare resource use of moderate to severe atopic dermatitis in England: A 10-year national study" was presented at The European Society for Dermatological Research (ESDR). This study highlights the prevalence and economic burden, in terms of primary and secondary healthcare services, of atopic dermatitis. Direct healthcare resource use, and indirect, increased with atopic dermatitis severity. By quantifying the economic burden associated with atopic dermatitis, clinical management should focus on interventions that reduce the severity of the condition thereby improving the impact that atopic dermatitis has on individual patients.

2. Manuscript & Poster: "The burden of meningococcal disease in England from 2014 to 2019: A five-year study using healthcare resource dataset".

This was a retrospective study using HES data to assess the healthcare resource use of meningococcal disease in England over a 5-year period demonstrating that the number of meningococcal disease hospital admissions decreased over the 5-year period from 2014 to 2019. However, over the same time period, the length of meningococcal disease hospital stays increased, possibly signalling an increase in severity of observed cases. This emphasises the importance of meningococcal vaccination, with uptake encouraged by healthcare provisions, and early detection of infection after patient presentation. Poster was presented at the National Immunization Conference

3. Poster: "The health system burden of selected vaccine-preventable illnesses on secondary care in England: a five-year study using an administrative healthcare dataset", presented at The International Society for Pharmacoeconomics and Outcomes Research (ISPOR). The study included 75,553 patients. Among the selected conditions, Hib and hepatitis B contributed the most to the overall cost burden, in excess of £490m. The study has demonstrated that although patients that present with a vaccine-preventable disease continue to impose a large burden on NHS resources, there is potential to reduce this cost burden. This could be achieved by optimising vaccination schedules and ensuring that high vaccine coverage rates are maintained to improve public health and reduce NHS burden.

4. Poster: "The Prevalence and Patient Outcomes of Adult Primary Hypercholesterolaemia and Dyslipidaemia in the UK". Presented at The European Society of Cardiology (ESC). The annual prevalence of primary hypercholesterolemia and mixed dyslipidemia increased from 14.0% prior to 2009 to 24.1% by 2019. The prevalence of primary hypercholesterolemia and mixed dyslipidemia has increasing likely due to more systematic identification. A large proportion of patients with primary hypercholesterolemia and mixed dyslipidemia are of high and very high cardiovascular risk, remain suboptimally treated in terms of lipid lowering, and may experience cardiovascular events with associated non-negligible clinical and economic sequelae. Despite intensive LDL-C-lowering recommendations, these do not translate in clinical practice to the wider population.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. The "Covid-19 effect: Examining the impact on elective and emergency admissions" looks at the continuing effect of the Covid-19 pandemic on non-covid hospital admissions. Patient numbers are tracked monthly by elective and non-elective admissions and broken down by age, gender and by hospital trust.

2. The "Long-Covid Research Report: Exploring the characteristics of patients with post-covid syndrome" analyses patients in England whose medical records indicated consultations or positive tests for Covid-19 or post-Covid syndrome.

3. The "Continuing effect of Covid-19: Examining the impact on elective and emergency admissions" details the continuing effect of the Covid-19 pandemic on non-covid hospital admissions. Patient numbers are tracked monthly by elective and non-elective admissions and broken down by age, gender and by hospital trust.

Health iQ Limited (Health iQ) is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health IQ requires data from NHS Digital for the purposes of these legitimate interests and processes data under this agreement under Articles 6(1)(f) and 9(2)(j) of GDPR.

Health IQ wish to process the data in order to conduct analysis that will support the optimal delivery of healthcare as a whole, and hence be a benefit to the individuals and all patients. This analysis helps in a variety of ways including:

• Understanding the prevalence and burden of conditions, so that budgeting priorities can be appropriately set.

• Understanding where good practice lies and what it looks like.

• To conduct new research into disease areas, resulting in publications which provide new knowledge for the benefit of all.

Patient-level data is required in order to accurately conduct the above types of analysis, without this Health iQ could not conduct the level of research needed to provide new insights into diseases or treatment pathways, and the potential benefit to healthcare of this research would not be realised. Health iQ have carried out a Legitimate Impact Assessment using the ICO template and has been reviewed by NHS Digital. NHS Digital concluded that Health iQ can rely on legitimate interests for this processing.

1. Vantage System and Related Support

Health iQ will use the HES (Admitted Patient Care (APC), Outpatient (OP), Accident & Emergency (AE)/Emergency Care Data Set (ECDS) & Critical Care (CC)) datasets.

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

For avoidance of doubt, the critical care speciality detail comes from the HES Admitted Patient Care dataset. The HES Critical Care dataset is not used.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), Private Healthcare Providers).

2. Commissioning Organisations (eg CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ and users, as well as terms of use which every user must agree to when first logging in. Processing of the data is restricted to within England and Wales, but all outputs are aggregated with small-numbers suppressed in line with the HES analysis guide. If users are overseas they will only ever see aggregated data with small numbers suppressed within the Vantage tool.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ insist that all users of the tool undergo information governance training by a Health iQ trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

Users of the Vantage tool can only see aggregated data with small numbers suppressed and do not at any stage have a view of the underlying data.

Health iQ have added a function in the Vantage tool that allows longitudinal tracking of patients. This is useful in measuring the impact of an intervention in a treatment pathway, for example looking at the activity of a group of patients before and after a surgical procedure, to demonstrate the reduction in healthcare burden after having the surgery. The functionality requires sufficient longitudinal history to have value, and hence Health iQ require 5 years of data plus current in the tool (ie a maximum of 6 years).

This length of data is justified by the increased scope for data minimisation enabled by Health iQ's new functionality, ie by selecting a specific cohort of patients users are not looking at large populations of patients but only a specific group who are relevant to the study in question. For example, when looking at the disease burden of Diabetes, one cannot only identify patients who are coded explicitly with the condition but track these patients longitudinally over time to capture their true burden. This allows a much more accurate representation of the cost burden of such patients, which in turn is useful when submitting an HTA application to NICE.

Health iQ have considered ways in which to minimise the data further against the NHS Digital Minimisation Standard and have concluded that all minimisation possibilities have been considered.

2. Reports, Studies and Analysis

Health iQ will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

Health IQ will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this Data Sharing Agreement. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through contractual agreements which ensure the usage of the data is in line with this Data Sharing Agreement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

In order for Health IQ to take full advantage of this service, 5 years (plus current year) across the 4 HES datasets (APC, OP, AE (ECDS), and CC) is required.

3. Public Access ‘Health iQ Insight’ Reports

Health iQ will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ website. The first two of these have been published and are available to view on the Health iQ website. Health IQ aim to produce a new report each quarter.

Health iQ Limited is the data controller and also processes the data for these purposes. No other organisations process the data for these purposes.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement. Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. An example of a planned use is Health iQ’s Covid-19 Hospitalisation Dashboard. This is a graphical presentation of Covid-19 admissions across hospitals, looking at historical trends and variation in rates by Provider. The aim is to help identify variation in care and outcomes.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. Abstract: "Healthcare resource use of Moderate to Severe Atopic Dermatitis in England: A 10-year National Study using Datasets (The MAD – HCRU Study)". Presented at The European Society for Dermatological Research (ESDR) and The International Society for Pharmacoeconomics and Outcomes Research (ISPOR).

2. Manuscript & Poster: "The burden of meningococcal disease in England from 2014 to 2019: A five-year study using healthcare resource dataset".

3. Poster: "The health system burden of selected vaccine-preventable illnesses on secondary care in England: a five-year study using an administrative healthcare dataset". Presented at The International Society for Pharmacoeconomics and Outcomes Research (ISPOR).

4. Poster: "The Prevalence and Patient Outcomes of Adult Primary Hypercholesterolaemia and Dyslipidaemia in the UK". Presented at The European Society of Cardiology (ESC).

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2019:

1. Report "Covid-19: Effect on Outpatient Activity". A comparison between the activty and cancellation rates across all England Provider Trusts.

2. Report "Sepsis Public Report". An analysis of patients with diagnosed Sepsis, looking at key outcomes such as mortality.

3. Report "Measles Prevalence & Associated Co-Morbidities". Analysis of the trend in Measles infection rates over the last 5 years.

Health iQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage Health iQ customers offer to the NHS. Health iQ have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Co-authored a poster titled Health-Care Resource Utilization following Trabeculectomy: An Analysis of English Hospital Episode Statistics (HES) Data: The study helped to demonstrate the value of new interventions with comparable interocular pressure and less resource burden.

2. Worked with Salford Royal NHS Foundation Trust to analyse the pathway of MS patients and compare to the NICE recommended standard, hence identifying any deviation from best practice.

3. Developed a Mortality Risk Predictor algorithm for patients undergoing a range of surgical procedures, based on criteria such as age, co-morbid conditions and procedure type. This allowed Health iQ to produce a risk index which can be used to guide decision-making prior to surgery.

4. Conducted a study titled Characterisation of Atrial Fibrillation and Bleeding Risk Factors with Chronic Lymphocytic Leukaemia. The aim was to identify risk factors for AF or bleeding for CLL patients, to support the treatment of these patients with appropriate medication.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2019:

1. Analysis of the burden of patients after laser eye surgery.

Reports planned:

1. Trends in measles diagnosis. Report on recent trends in new incidence of measles across England.

2. Cardiology performance report. Report looking at key metrics of performance across cardiology units in England.

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Report completed.

2. Public access reports produced: Analysis of Sepsis Hospitalisations, Measles Prevalence Patterns, Post Procedure Analysis of Laser Eye Surgery.

Health iQ Limited (Health iQ) is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health IQ requires data from NHS Digital for the purposes of these legitimate interests and processes data under this agreement under Articles 6(1)(f) and 9(2)(j) of GDPR.

Health IQ wish to process the data in order to conduct analysis that will support the optimal delivery of healthcare as a whole, and hence be a benefit to the individuals and all patients. This analysis helps in a variety of ways including:

• Understanding the prevalence and burden of conditions, so that budgeting priorities can be appropriately set.

• Understanding where good practice lies and what it looks like.

• To conduct new research into disease areas, resulting in publications which provide new knowledge for the benefit of all.

Patient-level data is required in order to accurately conduct the above types of analysis, without this Health iQ could not conduct the level of research needed to provide new insights into diseases or treatment pathways, and the potential benefit to healthcare of this research would not be realised. Health iQ have carried out a Legitimate Impact Assessment using the ICO template and has been reviewed by NHS Digital. NHS Digital concluded that Health iQ can rely on legitimate interests for this processing.

1. Vantage System and Related Support

Health iQ will use the HES (Admitted Patient Care (APC), Outpatient (OP), Accident & Emergency (AE)/Emergency Care Data Set (ECDS) & Critical Care (CC)) datasets.

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

For avoidance of doubt, the critical care speciality detail comes from the HES Admitted Patient Care dataset. The HES Critical Care dataset is not used.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), Private Healthcare Providers).

2. Commissioning Organisations (eg CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ and users, as well as terms of use which every user must agree to when first logging in. Processing of the data is restricted to within England and Wales, but all outputs are aggregated with small-numbers suppressed in line with the HES analysis guide. If users are overseas they will only ever see aggregated data with small numbers suppressed within the Vantage tool.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ insist that all users of the tool undergo information governance training by a Health iQ trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

Users of the Vantage tool can only see aggregated data with small numbers suppressed and do not at any stage have a view of the underlying data.

Health iQ have added a function in the Vantage tool that allows longitudinal tracking of patients. This is useful in measuring the impact of an intervention in a treatment pathway, for example looking at the activity of a group of patients before and after a surgical procedure, to demonstrate the reduction in healthcare burden after having the surgery. The functionality requires sufficient longitudinal history to have value, and hence Health iQ require 5 years of data plus current in the tool (ie a maximum of 6 years).

This length of data is justified by the increased scope for data minimisation enabled by Health iQ's new functionality, ie by selecting a specific cohort of patients users are not looking at large populations of patients but only a specific group who are relevant to the study in question. For example, when looking at the disease burden of Diabetes, one cannot only identify patients who are coded explicitly with the condition but track these patients longitudinally over time to capture their true burden. This allows a much more accurate representation of the cost burden of such patients, which in turn is useful when submitting an HTA application to NICE.

Health iQ have considered ways in which to minimise the data further against the NHS Digital Minimisation Standard and have concluded that all minimisation possibilities have been considered.

2. Reports, Studies and Analysis

Health iQ will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

Health IQ will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this Data Sharing Agreement. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through contractual agreements which ensure the usage of the data is in line with this Data Sharing Agreement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

In order for Health IQ to take full advantage of this service, 5 years (plus current year) across the 4 HES datasets (APC, OP, AE, and CC) is required.

3. Public Access ‘Health iQ Insight’ Reports

Health iQ will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ website. The first two of these have been published and are available to view on the Health iQ website. Health IQ aim to produce a new report each quarter.

Health iQ Limited is the data controller and also processes the data for these purposes. No other organisations process the data for these purposes.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement. Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. An example of a planned use is Health iQ’s Covid-19 Hospitalisation Dashboard. This is a graphical presentation of Covid-19 admissions across hospitals, looking at historical trends and variation in rates by Provider. The aim is to help identify variation in care and outcomes.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. Abstract: "Healthcare resource use of Moderate to Severe Atopic Dermatitis in England: A 10-year National Study using Datasets (The MAD – HCRU Study)". Presented at The European Society for Dermatological Research (ESDR) and The International Society for Pharmacoeconomics and Outcomes Research (ISPOR).

2. Manuscript & Poster: "The burden of meningococcal disease in England from 2014 to 2019: A five-year study using healthcare resource dataset".

3. Poster: "The health system burden of selected vaccine-preventable illnesses on secondary care in England: a five-year study using an administrative healthcare dataset". Presented at The International Society for Pharmacoeconomics and Outcomes Research (ISPOR).

4. Poster: "The Prevalence and Patient Outcomes of Adult Primary Hypercholesterolaemia and Dyslipidaemia in the UK". Presented at The European Society of Cardiology (ESC).

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2019:

1. Report "Covid-19: Effect on Outpatient Activity". A comparison between the activty and cancellation rates across all England Provider Trusts.

2. Report "Sepsis Public Report". An analysis of patients with diagnosed Sepsis, looking at key outcomes such as mortality.

3. Report "Measles Prevalence & Associated Co-Morbidities". Analysis of the trend in Measles infection rates over the last 5 years.

May 2020 Health iQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage Health iQ customers offer to the NHS. Health iQ have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Co-authored a poster titled Health-Care Resource Utilization following Trabeculectomy: An Analysis of English Hospital Episode Statistics (HES) Data: The study helped to demonstrate the value of new interventions with comparable interocular pressure and less resource burden.

2. Worked with Salford Royal NHS Foundation Trust to analyse the pathway of MS patients and compare to the NICE recommended standard, hence identifying any deviation from best practice.

3. Developed a Mortality Risk Predictor algorithm for patients undergoing a range of surgical procedures, based on criteria such as age, co-morbid conditions and procedure type. This allowed Health iQ to produce a risk index which can be used to guide decision-making prior to surgery.

4. Conducted a study titled Characterisation of Atrial Fibrillation and Bleeding Risk Factors with Chronic Lymphocytic Leukaemia. The aim was to identify risk factors for AF or bleeding for CLL patients, to support the treatment of these patients with appropriate medication.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2019:

1. Analysis of the burden of patients after laser eye surgery.

Reports planned:

1. Trends in measles diagnosis. Report on recent trends in new incidence of measles across England.

2. Cardiology performance report. Report looking at key metrics of performance across cardiology units in England.

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Report completed.

2. Public access reports produced: Analysis of Sepsis Hospitalisations, Measles Prevalence Patterns, Post Procedure Analysis of Laser Eye Surgery.

Health iQ Limited (Health iQ) is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health IQ requires data from NHS Digital for the purposes of these legitimate interests and processes data under this agreement under Articles 6(1)(f) and 9(2)(j) of GDPR.

Health IQ wish to process the data in order to conduct analysis that will support the optimal delivery of healthcare as a whole, and hence be a benefit to the individuals and all patients. This analysis helps in a variety of ways including:

• Understanding the prevalence and burden of conditions, so that budgeting priorities can be appropriately set.

• Understanding where good practice lies and what it looks like.

• To conduct new research into disease areas, resulting in publications which provide new knowledge for the benefit of all.

Patient-level data is required in order to accurately conduct the above types of analysis, without this Health iQ could not conduct the level of research needed to provide new insights into diseases or treatment pathways, and the potential benefit to healthcare of this research would not be realised. Health iQ have carried out a Legitimate Impact Assessment using the ICO template and has been reviewed by NHS Digital. NHS Digital concluded that Health iQ can rely on legitimate interests for this processing. A summary of the decision justification is provided below;

'1. Purpose test: are you pursuing a legitimate interest? The processing is in the legitimate interest of Health iQ. It is also in the interests of healthcare as it brings benefits and improvements to the NHS and patients. Analysis helps to understand the prevalence and burden of conditions enabling budgeting priorities to be set and providing examples of good practice.

2. Necessity test: is the processing necessary for that purpose? Analysis of healthcare data is necessary to understand how healthcare is delivered. Health iQ process the minimum data to meet the purpose. The same level of insight can’t be achieved without looking into patient-level data, the purpose could not be achieved by processing the data in a less intrusive way.

3. Balancing test: do the individual’s interests override the legitimate interest? The data is about people’s hospital treatment, but contains no identifiable information and has all fields deemed ‘sensitive’ removed, and Health iQ have no ability to re-identify the data so is not likely to be considered ‘private’.

1. Vantage System and Related Support

Health iQ will use the HES (Admitted Patient Care (APC), Outpatient (OP), and Accident & Emergency (AE)/Emergency Care Data Set (ECDS)) data for the following purpose (HES Critical Care (CC) data will NOT be used for this purpose).

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

For avoidance of doubt, the critical care speciality detail comes from the HES Admitted Patient Care dataset. The HES Critical Care dataset is not used.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), Private Healthcare Providers).

2. Commissioning Organisations (eg CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ and users, as well as terms of use which every user must agree to when first logging in. Processing of the data is restricted to within England and Wales, but all outputs are aggregated with small-numbers suppressed in line with the HES analysis guide. If users are overseas they will only ever see aggregated data with small numbers suppressed within the Vantage tool.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ insist that all users of the tool undergo information governance training by a Health iQ trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

Users of the Vantage tool can only see aggregated data with small numbers suppressed and do not at any stage have a view of the underlying data.

Health iQ have added a function in the Vantage tool that allows longitudinal tracking of patients. This is useful in measuring the impact of an intervention in a treatment pathway, for example looking at the activity of a group of patients before and after a surgical procedure, to demonstrate the reduction in healthcare burden after having the surgery. The functionality requires sufficient longitudinal history to have value, and hence Health iQ require 5 years of data plus current in the tool (ie a maximum of 6 years).

While this is an increase of 2 years on the existing license, it is felt that this is justified by the increased scope for data minimisation enabled by Health iQ's new functionality, ie by selecting a specific cohort of patients users are not looking at large populations of patients but only a specific group who are relevant to the study in question. For example, when looking at the disease burden of Diabetes, one cannot only identify patients who are coded explicitly with the condition but track these patients longitudinally over time to capture their true burden. This allows a much more accurate representation of the cost burden of such patients, which in turn is useful when submitting an HTA application to NICE.

Health iQ have considered ways in which to minimise the data further against the NHS Digital Minimisation Standard and have concluded that all minimisation possibilities have been considered.

2. Reports, Studies and Analysis

Health iQ will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

Health IQ will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this Data Sharing Agreement. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through contractual agreements which ensure the usage of the data is in line with this Data Sharing Agreement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

In order for Health IQ to take full advantage of this service, 5 years (plus current year) across the 4 HES datasets (APC, OP, AE, and CC) is required.

3. Public Access ‘Health iQ Insight’ Reports

Health iQ will use the HES (APC, OP, AE, ECDS & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ website. The first two of these have been published and are available to view on the Health iQ website. Health IQ aim to produce a new report each quarter.

Health iQ Limited is the data controller and also processes the data for these purposes. No other organisations process the data for these purposes.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement. Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. An example of a planned use is Health iQ’s Surgical Site Infection (SSI) Dashboard. This is a graphical presentation of SSI rates across hospitals, looking at historical trends and variation in rates by specialty and procedure type. The aim is to help identify best practice and where support is needed, with the aim of supporting the standardisation of post-surgical care to minimise infection rates.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. Sickle-Cell Disease Study: The purpose of the study is to identify if there is an increased incidence of sickle cell disease (SCD)-related Osteonecrosis among patients with more severe VOCs than those with less severe vaso-occlusive crises (VOC). The intention is to publish the findings in 2020.

2. Meningococcal disease is a term used to describe two major illnesses – meningitis and septicaemia. These can occur on their own or more commonly, together. It is a life-threatening infection caused by Neisseria meningitidis. Men B is the most common strain in the UK, but other strains include MenA, MenC, MenW and MenY. Around 10% of the population carries meningococcal bacteria in the back of their throats at any given time. Up to 10% of cases will result in death. A study entitled 'Quantifying the healthcare resource utiliation costs of Meningococcal disease patients in England', was undertaken and completed. The aim being to understand if there was a need for new guidance on the treatment of these patients, specifically a vaccination programme. The results were presented at the Meningitis Research Foundation conference.

Health iQ propose to conduct a retrospective analysis of a HES dataset to quantify healthcare resource utilisation over a 24-month period, post diagnosis of meningococcal disease. The output of this analysis will give Health iQ a deeper understanding of the burden of disease, as well the profiles of these patients. The aim is to use this data to feed a publication in 2020.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2019:

1. Analysis of the burden of patients after laser eye surgery.

Reports planned:

1. Trends in measles diagnosis. Report on recent trends in new incidence of measles across England.

2. Cardiology performance report. Report looking at key metrics of performance across cardiology units in England.

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Report completed.

2. Public access report: Optimal use of diagnostic testing for Cardiology. An angiography is an expensive, invasive diagnostic procedure given to certain cardiology patients. Non-invasive, cheaper alternatives exist which are suitable for many patients. Health iQ will conduct an analysis of the proportion of angiography procedures vs a range of diagnostic testing alternatives (MRI angio, CT angio, stress echo) by Provider Trust. This report is currently in the process of being made freely available to any user and published via a dedicated page on the Health iQ website.

May 2020 Health iQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage Health iQ customers offer to the NHS. Health iQ have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Co-authored a poster titled Health-Care Resource Utilization following Trabeculectomy: An Analysis of English Hospital Episode Statistics (HES) Data: The study helped to demonstrate the value of new interventions with comparable interocular pressure and less resource burden.

2. Worked with Salford Royal NHS Foundation Trust to analyse the pathway of MS patients and compare to the NICE recommended standard, hence identifying any deviation from best practice.

3. Developed a Mortality Risk Predictor algorithm for patients undergoing a range of surgical procedures, based on criteria such as age, co-morbid conditions and procedure type. This allowed Health iQ to produce a risk index which can be used to guide decision-making prior to surgery.

4. Conducted a study titled Characterisation of Atrial Fibrillation and Bleeding Risk Factors with Chronic Lymphocytic Leukaemia. The aim was to identify risk factors for AF or bleeding for CLL patients, to support the treatment of these patients with appropriate medication.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2019:

1. Analysis of the burden of patients after laser eye surgery.

Reports planned:

1. Trends in measles diagnosis. Report on recent trends in new incidence of measles across England.

2. Cardiology performance report. Report looking at key metrics of performance across cardiology units in England.

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Report completed.

2. Public access report: Optimal use of diagnostic testing for Cardiology. An angiography is an expensive, invasive diagnostic procedure given to certain cardiology patients. Non-invasive, cheaper alternatives exist which are suitable for many patients. Health iQ will conduct an analysis of the proportion of angiography procedures vs a range of diagnostic testing alternatives (MRI angio, CT angio, stress echo) by Provider Trust. This report is currently in the process of being made freely available to any user and published via a dedicated page on the Health iQ website.

Health iQ Limited (Health iQ) is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health IQ requires data from NHS Digital for the purposes of these legitimate interests.

1. Vantage System and Related Support

Health iQ will use the HES (Admitted Patient Care (APC), Outpatient (OP), and Accident & Emergency (AE)) data for the following purpose (HES Critical Care (CC) data will NOT be used for this purpose).

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

For avoidance of doubt, the critical care speciality detail comes from the HES Admitted Patient Care dataset. The HES Critical Care dataset is not used.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), non-NHS providers).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ and users. System use is restricted to within the UK, but outputs are anonymous and therefore could be used worldwide.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ insist that all users of the tool undergo information governance training by a Health iQ trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

Health iQ have added a function in the Vantage tool that allows longitudinal tracking of patients. This allows the user to be more specific when analysing data, so can pick a targeted group of patients rather than looking at the whole population. This means that the data minimisation is much better, which is great for privacy. But this functionality is only useful if the tool holds sufficient patient history, hence Health iQ requires 3 years plus current year worth of HES data in order to maximise this function. For clarity, this equates to a maximum of 4 years worth of data.

2. Reports, Studies and Analysis

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

Health IQ will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this Data Sharing Agreement. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through the service contract which is signed between Health iQ and any client, and includes the full text of Health iQ’s DSA Purpose statement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

In order for Health IQ to take full advantage of this service, 3 years (plus current year) across the 4 HES datasets (APC, OP, AE, and CC) is required.

3. Public Access ‘Health iQ Insight’ Reports

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ website. The first two of these have been published and are available to view on the Health iQ website. Health IQ aim to produce a new report each quarter.

Health iQ Limited is the data controller and also processes the data for these purposes. No other organisations process the data for these purposes.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement. Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. An example of a planned use is Health iQ’s Surgical Site Infection (SSI) Dashboard. This is a graphical presentation of SSI rates across hospitals, looking at historical trends and variation in rates by specialty and procedure type. The aim is to help identify best practice and where support is needed, with the aim of supporting the standardisation of post-surgical care to minimise infection rates.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. Sickle-Cell Disease Study: The purpose of the study is to identify if there is an increased incidence of sickle cell disease (SCD)-related Osteonecrosis among patients with more severe VOCs than those with less severe VOC. The intention is to publish the findings in 2020.

2. Meningococcal disease is a term used to describe two major illnesses – meningitis and septicaemia. These can occur on their own or more commonly, together. It is a life-threatening infection caused by Neisseria meningitidis. Men B is the most common strain in the UK, but other strains include MenA, MenC, MenW and MenY. Around 10% of the population carries meningococcal bacteria in the back of their throats at any given time. Up to 10% of cases will result in death.

Health iQ propose to conduct a retrospective analysis of a HES dataset to quantify healthcare resource utilisation over a 24-month period, post diagnosis of meningococcal disease. The output of this analysis will give Health iQ a deeper understanding of the burden of disease, as well the profiles of these patients. The aim is to use this data to feed a publication in 2020.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2019:

1. Analysis of the burden of patients after laser eye surgery.

Reports planned:

1. Trends in measles diagnosis. Report on recent trends in new incidence of measles across England.

2. Cardiology performance report. Report looking at key metrics of performance across cardiology units in England.

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Report completed.

2. Public access report: Optimal use of diagnostic testing for Cardiology. An angiography is an expensive, invasive diagnostic procedure given to certain cardiology patients. Non-invasive, cheaper alternatives exist which are suitable for many patients. Health iQ will conduct an analysis of the proportion of angiography procedures vs a range of diagnostic testing alternatives (MRI angio, CT angio, stress echo) by Provider Trust. This report is currently in the process of being made freely available to any user and published via a dedicated page on the Health iQ website.

Health iQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage their customers offer to the NHS. Health iQ have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Co-authored a poster titled Health-Care Resource Utilization following Trabeculectomy: An Analysis of English Hospital Episode Statistics (HES) Data͛͘The study helped to demonstrate the value of new interventions with comparable interocular pressure and less resource burden.

2. Worked with Salford Royal NHS Foundation Trust to analyse the pathway of MS patients and compare to the NICE recommended standard, hence identifying any deviation from best practice.

3. Developed a Mortality Risk Predictor algorithm for patients undergoing a range of surgical procedures, based on criteria such as age, co-morbid conditions and procedure type. This allowed Health iQ to produce a risk index which can be used to guide decision-making prior to surgery.

4. Conducted a study titled Characterisation of Atrial Fibrillation and Bleeding Risk Factors with Chronic Lymphocytic Leukaemia. The aim was to identify risk factors for AF or bleeding for CLL patients, to support the treatment of these patients with appropriate medication.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Health iQ Limited (Health iQ) is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health IQ requires data from NHS Digital for the purposes of these legitimate interests.

1. Vantage System and Related Support

Health iQ will use the HES (Admitted Patient Care (APC), Outpatient (OP), and Accident & Emergency (AE)) data for the following purpose (HES Critical Care (CC) data will NOT be used for this purpose).

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

For avoidance of doubt, the critical care speciality detail comes from the HES Admitted Patient Care dataset. The HES Critical Care dataset is not used.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), non-NHS providers).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ and users. System use is restricted to within the UK, but outputs are anonymous and therefore could be used worldwide.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ insist that all users of the tool undergo information governance training by a Health iQ trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

Health iQ have added a function in the Vantage tool that allows longitudinal tracking of patients. This allows the user to be more specific when analysing data, so can pick a targeted group of patients rather than looking at the whole population. This means that the data minimisation is much better, which is great for privacy. But this functionality is only useful if the tool holds sufficient patient history, hence Health iQ requires 3 years plus current year worth of HES data in order to maximise this function. For clarity, this equates to a maximum of 4 years worth of data.

2. Reports, Studies and Analysis

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

Health IQ will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this Data Sharing Agreement. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this Data Sharing Agreement, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through the service contract which is signed between Health iQ and any client, and includes the full text of Health iQ’s DSA Purpose statement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

In order for Health IQ to take full advantage of this service, 3 years (plus current year) across the 4 HES datasets (APC, OP, AE, and CC) is required.

3. Public Access ‘Health iQ Insight’ Reports

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ website. The first two of these have been published and are available to view on the Health iQ website. Health IQ aim to produce a new report each quarter.

Health iQ Limited is the data controller and also processes the data for these purposes. No other organisations process the data for these purposes.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement. Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. An example of a planned use is Health iQ’s Surgical Site Infection (SSI) Dashboard. This is a graphical presentation of SSI rates across hospitals, looking at historical trends and variation in rates by specialty and procedure type. The aim is to help identify best practice and where support is needed, with the aim of supporting the standardisation of post-surgical care to minimise infection rates.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1. Sickle-Cell Disease Study: The purpose of the study is to identify if there is an increased incidence of sickle cell disease (SCD)-related Osteonecrosis among patients with more severe VOCs than those with less severe VOC. The intention is to publish the findings in 2020.

2. Meningococcal disease is a term used to describe two major illnesses – meningitis and septicaemia. These can occur on their own or more commonly, together. It is a life-threatening infection caused by Neisseria meningitidis. Men B is the most common strain in the UK, but other strains include MenA, MenC, MenW and MenY. Around 10% of the population carries meningococcal bacteria in the back of their throats at any given time. Up to 10% of cases will result in death.

Health iQ propose to conduct a retrospective analysis of a HES dataset to quantify healthcare resource utilisation over a 24-month period, post diagnosis of meningococcal disease. The output of this analysis will give Health iQ a deeper understanding of the burden of disease, as well the profiles of these patients. The aim is to use this data to feed a publication in 2020.

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2019:

1. Analysis of the burden of patients after laser eye surgery.

Reports planned:

1. Trends in measles diagnosis. Report on recent trends in new incidence of measles across England.

2. Cardiology performance report. Report looking at key metrics of performance across cardiology units in England.

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Report completed.

2. Public access report: Optimal use of diagnostic testing for Cardiology. An angiography is an expensive, invasive diagnostic procedure given to certain cardiology patients. Non-invasive, cheaper alternatives exist which are suitable for many patients. Health iQ will conduct an analysis of the proportion of angiography procedures vs a range of diagnostic testing alternatives (MRI angio, CT angio, stress echo) by Provider Trust. This report is currently in the process of being made freely available to any user and published via a dedicated page on the Health iQ website.

Health iQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage their customers offer to the NHS. Health iQ have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Co-authored a poster titled Health-Care Resource Utilization following Trabeculectomy: An Analysis of English Hospital Episode Statistics (HES) Data͛͘The study helped to demonstrate the value of new interventions with comparable interocular pressure and less resource burden.

2. Worked with Salford Royal NHS Foundation Trust to analyse the pathway of MS patients and compare to the NICE recommended standard, hence identifying any deviation from best practice.

3. Developed a Mortality Risk Predictor algorithm for patients undergoing a range of surgical procedures, based on criteria such as age, co-morbid conditions and procedure type. This allowed Health iQ to produce a risk index which can be used to guide decision-making prior to surgery.

4. Conducted a study titled Characterisation of Atrial Fibrillation and Bleeding Risk Factors with Chronic Lymphocytic Leukaemia. The aim was to identify risk factors for AF or bleeding for CLL patients, to support the treatment of these patients with appropriate medication.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Health iQ is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health IQ requires data from NHS Digital for the purposes of these legitimate interests.

1. Vantage System and Related Support

Health iQ will use the HES (Admitted Patient Care (APC), Outpatient (OP), and Accident & Emergency (AE)) data for the following purpose (HES Critical Care (CC) data will NOT be used for this purpose).

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), non-NHS providers).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this document, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ and users. System use is restricted to within the UK, but outputs are anonymous and therefore could be used worldwide.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ insist that all users of the tool undergo information governance training by a Health iQ trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

2. Reports, Studies and Analysis

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

Health IQ will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this document. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this document, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through the service contract which is signed between Health iQ and any client, and includes the full text of our DSA Purpose statement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

3. Public Access ‘Health iQ Insight’ Reports

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ website. The first two of these have been published and are available to view on the Health iQ website. Health IQ aim to produce a new report each quarter.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement. Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. Examples include:

1) Migraine dashboard. A set of charts looking at the volume and cost of hospital activity relating to Neurology treatment and comparing this to the volume and cost of hospital activity relating specifically to Migraine treatment, to show the scale of Migraine as a proportion of all Neurology. It also looks at where else Migraine patients are treated other than Neurology, as well as the volume of procedures carried out relating to Migraine. The dashboard essentially gives a high-level picture of the treatment of Migraine across all Providers and allows easy comparison between different Providers to support standardisation and improvement in Migraine care.

2) Dermatology RTT waiting time report. Looks at the waiting times between GP referral and OP appts taking place, highlighting potential capacity issues which result in delayed appointments.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1) Health iQ will conduct a study looking at patients with RSV (Respiratory Syncytial Virus), to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify characteristics of patients who should be targeted for treatment. This will utilise HES IP data. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

2) Health iQ will conduct a study comparing the cardiometabolic healthcare burden of schizophrenia patients compared with equivalent patients who do not have schizophrenia. The aim is to quantify the increased cardiometabolic burden of schizophrenia patients, to support the need for more targeted support for this sub-group of patients. This will involve HES IP data. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

3) Health iQ will conduct a study into the burden of patients who have a surgical site infection, compared with patients who have the same procedures but no infection, in order to quantify the burden of SSI and make a case for better preventative measures pre-surgery. This will involve HES IP data, expected output in within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2018:

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Reports planned:

1. Winter pressures report (exp Q4 2018): Analysis of the winter pressure burden across Provider Trusts.

2. IV Infusion Demand Analysis (exp Q1 2019): Breakdown of the current demand for IV infusion services by specialty, compared to the previous 3 years.

3. Diagnostic testing of cardiology patients (see below, exp Q2 2019).

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

2. Public access report: Optimal use of diagnostic testing for Cardiology. An angiography is an expensive, invasive diagnostic procedure given to certain cardiology patients. Non-invasive, cheaper alternatives exist which are suitable for many patients. Health iQ will conduct an analysis of the proportion of angiography procedures vs a range of diagnostic testing alternatives (MRI angio, CT angio, stress echo) by Provider Trust. This report will be made freely available to any user and published via a dedicated page on the Health iQ website. Target date: Q2 2019.

Health iQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage their customers offer to the NHS. Health iQ have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Co-authored a poster titled Health-Care Resource Utilization following Trabeculectomy: An Analysis of English Hospital Episode Statistics (HES) Data͛͘The study helped to demonstrate the value of new interventions with comparable interocular pressure and less resource burden.

2. Worked with Salford Royal NHS Foundation Trust to analyse the pathway of MS patients and compare to the NICE recommended standard, hence identifying any deviation from best practice.

3. Developed a Mortality Risk Predictor algorithm for patients undergoing a range of surgical procedures, based on criteria such as age, co-morbid conditions and procedure type. This allowed Health iQ to produce a risk index which can be used to guide decision-making prior to surgery.

4. Conducted a study titled Characterisation of Atrial Fibrillation and Bleeding Risk Factors with Chronic Lymphocytic Leukaemia. The aim was to identify risk factors for AF or bleeding for CLL patients, to support the treatment of these patients with appropriate medication.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Health iQ is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health IQ requires data from NHS Digital for the purposes of these legitimate interests.

1. Vantage System and Related Support

Health iQ will use the HES (Admitted Patient Care (APC), Outpatient (OP), and Accident & Emergency (AE)) data for the following purpose (HES Critical Care (CC) data will NOT be used for this purpose).

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

The users of Vantage are limited to the following:

1. Healthcare providers (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs), non-NHS providers).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this document, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ and users. Outputs are anonymous and therefore could be used worldwide but have been restricted to the UK.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ insist that all users of the tool undergo information governance training by a Health iQ trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

2. Reports, Studies and Analysis

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

Health IQ will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this document. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this document, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through the service contract which is signed between Health iQ and any client, and includes the full text of our DSA Purpose statement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

3. Public Access ‘Health iQ Insight’ Reports

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publicly available, including being viewed on a dedicated area on the Health iQ website. The first two of these have been published and are available to view on the Health iQ website. Health IQ aim to produce a new report each quarter.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement. Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. Examples include:

1) Migraine dashboard. A set of charts looking at the volume and cost of hospital activity relating to Neurology treatment and comparing this to the volume and cost of hospital activity relating specifically to Migraine treatment, to show the scale of Migraine as a proportion of all Neurology. It also looks at where else Migraine patients are treated other than Neurology, as well as the volume of procedures carried out relating to Migraine. The dashboard essentially gives a high-level picture of the treatment of Migraine across all Providers and allows easy comparison between different Providers to support standardisation and improvement in Migraine care.

2) Dermatology RTT waiting time report. Looks at the waiting times between GP referral and OP appts taking place, highlighting potential capacity issues which result in delayed appointments.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1) Health iQ will conduct a study looking at patients with RSV (Respiratory Syncytial Virus), to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify characteristics of patients who should be targeted for treatment. This will utilise HES IP data. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

2) Health iQ will conduct a study comparing the cardiometabolic healthcare burden of schizophrenia patients compared with equivalent patients who do not have schizophrenia. The aim is to quantify the increased cardiometabolic burden of schizophrenia patients, to support the need for more targeted support for this sub-group of patients. This will involve HES IP data. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

3) Health iQ will conduct a study into the burden of patients who have a surgical site infection, compared with patients who have the same procedures but no infection, in order to quantify the burden of SSI and make a case for better preventative measures pre-surgery. This will involve HES IP data, expected output in within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2018:

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Reports planned:

1. Winter pressures report (exp Q4 2018): Analysis of the winter pressure burden across Provider Trusts.

2. IV Infusion Demand Analysis (exp Q1 2019): Breakdown of the current demand for IV infusion services by specialty, compared to the previous 3 years.

3. Diagnostic testing of cardiology patients (see below, exp Q2 2019).

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

2. Public access report: Optimal use of diagnostic testing for Cardiology. An angiography is an expensive, invasive diagnostic procedure given to certain cardiology patients. Non-invasive, cheaper alternatives exist which are suitable for many patients. Health iQ will conduct an analysis of the proportion of angiography procedures vs a range of diagnostic testing alternatives (MRI angio, CT angio, stress echo) by Provider Trust. This report will be made freely available to any user and published via a dedicated page on the Health iQ website. Target date: Q2 2019.

Health iQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage their customers offer to the NHS. Health iQ have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Co-authored a poster titled Health-Care Resource Utilization following Trabeculectomy: An Analysis of English Hospital Episode Statistics (HES) Data͛͘The study helped to demonstrate the value of new interventions with comparable interocular pressure and less resource burden.

2. Worked with Salford Royal NHS Foundation Trust to analyse the pathway of MS patients and compare to the NICE recommended standard, hence identifying any deviation from best practice.

3. Developed a Mortality Risk Predictor algorithm for patients undergoing a range of surgical procedures, based on criteria such as age, co-morbid conditions and procedure type. This allowed Health iQ to produce a risk index which can be used to guide decision-making prior to surgery.

4. Conducted a study titled Characterisation of Atrial Fibrillation and Bleeding Risk Factors with Chronic Lymphocytic Leukaemia. The aim was to identify risk factors for AF or bleeding for CLL patients, to support the treatment of these patients with appropriate medication.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Health iQ is a provider of data-based insight, who produce tools and reports used by health and social care to achieve the following broad aims:

1. Understand and quantify the burden of disease.

2. Support service improvement in terms of treatment and efficiency of service.

3. Add to the body of healthcare knowledge available through robust research.

Health IQ requires data from NHS Digital for the purposes of these legitimate interests.

1. Vantage System and Related Support

Health iQ will use the HES (Admitted Patient Care (APC), OutPatient (OP), and Accident&Emergency (AE)) data for the following purpose (HES Critical Care (CC) data will NOT be used for this purpose).

Vantage is an online system that produces aggregated, small-number suppressed, non-sensitive, non-identifiable HES-based dashboards and reports to support the delivery of healthcare. It supports the delivery of a range of key healthcare strategic priorities, including delivering the Five-Year Forward-View, Quality, Innovation, Productivity and Prevention (QIPP) targets and Joint Strategic Needs Assessment (JSNA) targets.

Vantage enables users to:

• Plan healthcare provision with the support of real world data.

• Benchmark performance against peer groups.

• Pinpoint areas of inefficiency.

• Validate the impact of a service improvement programme or new pathway model.

• Quantify burden of care across fully mapped pathways, covering inpatient, outpatient, A&E, mental health, critical care and diagnostic testing.

The users of Vantage are limited to the following:

1. NHS users (Provider Trusts, GPs, Commissioners including new NHS commissioning organisations/collaborations such as Vanguards and STPs, Area Teams, Strategic Clinical Networks (SCNs)).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, Department of Health (DH), NICE, Academic Health Science Networks (AHSNs)).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of Vantage can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this document, with the ultimate beneficiary being healthcare as a whole. This is enforced through a contractual agreement between Health iQ and users. Outputs are anyonymous and therefore could be used worldwide but have been restricted to the UK.

Life Science organisations are a user of Vantage exclusively for the purpose of providing benefit to healthcare. As with all user groups, they will only ever have access to aggregated outputs and are bound by contractual agreements which ensure the usage of the data is in line with this agreement. In addition, Health iQ insist that all users of the tool undergo information governance training by a Health iQ trainer, and all reports produced by the tool come with a pre-written disclaimer statement.

2. Reports, Studies and Analysis

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

Health IQ will produce reports either as responses to specific data requests, or as part of wider research projects. These reports will take the form of suppressed, aggregated, non-sensitive and non-identifiable data tables. As these reports will be constructed in response to a specific need, the content will vary, though all conform to all the restrictions outlined in this document. Examples of such reports could be:

• A report by Hospital on total activity which falls within a Best-Practice Tariff (BPT) area, and the proportion of such activity which achieved the BPT.

• A report of the tariff cost of Irritable Bowel Syndrome (IBS) patients by CCG, including all related symptoms and associated conditions to produce a ‘true burden’ analysis of the cost of IBD (Irritable Bowel Disease) to the healthcare system.

• A report on the pre and post-diagnosis burden of Major Depressive Disorder patients, covering Mental Health community contacts as well as related admissions.

• A report on the impact of early diagnostic testing on cardiovascular outcomes.

To be absolutely clear, reports will never:

• Relate or link HES data to the use of commercially available products, such as the prescribing of an individual pharmaceutical product.

• Present data in a way which patient or clinician identity can be identified, even by linking to other datasets.

• Break suppression rules.

The potential users of reports are:

1. NHS users (Provider Trusts, GPs, Commissioners, Area Teams, Strategic Clinical Networks).

2. Commissioning Support Units (CSUs).

3. Governmental organisations (NHS England, DH, NICE, AHSNs).

4. Social care (Local Authorities, Health & Wellbeing Boards).

5. Charities, not-for-profit organisations and academic institutions.

6. Life Sciences organisations (Pharmaceuticals, Medical Technology, Biotechnology).

Though the users of reports can be from any of the above listed groups, it is made clear that the allowed purposes of use are restricted to those mentioned in this document, with the ultimate beneficiary being healthcare as a whole. This is enforced legally through the service contract which is signed between Health iQ and any client, and includes the full text of our DSA Purpose statement. It is also monitored on an ongoing basis via a dedicated Client Services Manager, who provides training and guidance on how to use the tool in a compliant way.

3. Public Access ‘Health iQ Insight’ Reports

Health iQ will use the HES (APC, OP, AE & CC) data for this purpose.

These are reports based on aggregated, suppressed, non-sensitive, non-identifiable HES data with the aim of:

• Highlighting trends in demand and activity in a disease area.

• Raising awareness of a disease area.

• Providing high-level analysis of the management of a disease area.

These reports are being made publically available, including being viewed on a dedicated area on the Health iQ website. The first two of these have been published and are available to view on the Health iQ website. Health IQ aim to produce a new report each quarter.

Due to the nature of the purposes for processing the data, it is not possible to provide a comprehensive list of outputs that will be produced. What follows are some examples of what will be produced.

Outputs relating to Objective 1 (Vantage System and Related Support):

Vantage will continue to be used by organisations within the list of approved types, for the purposes stated within the purpose statement. Outputs are either internal dashboards and reports within the tool or exported reports in Excel format. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide and this agreement. Data will explicitly not be used for sales and marketing purposes. All queries run from Vantage are logged in the system and are hence auditable on request. Examples include:

1) Migraine dashboard. A set of charts looking at the volume and cost of hospital activity relating to Neurology treatment and comparing this to the volume and cost of hospital activity relating specifically to Migraine treatment, to show the scale of Migraine as a proportion of all Neurology. It also looks at where else Migraine patients are treated other than Neurology, as well as the volume of procedures carried out relating to Migraine. The dashboard essentially gives a high-level picture of the treatment of Migraine across all Providers and allows easy comparison between different Providers to support standardisation and improvement in Migraine care.

2) Dermatology RTT waiting time report. Looks at the waiting times between GP referral and OP appts taking place, highlighting potential capacity issues which result in delayed appointments.

Outputs relating to Objective 2 (Reports, Studies and Analysis):

1) Health iQ will conduct a study looking at patients with RSV (Respiratory Syncytial Virus), to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify characteristics of patients who should be targeted for treatment. This will utilise HES IP data. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

2) Health iQ will conduct a study comparing the cardiometabolic healthcare burden of schizophrenia patients compared with equivalent patients who do not have schizophrenia. The aim is to quantify the increased cardiometabolic burden of schizophrenia patients, to support the need for more targeted support for this sub-group of patients. This will involve HES IP data. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

3) Health iQ will conduct a study into the burden of patients who have a surgical site infection, compared with patients who have the same procedures but no infection, in order to quantify the burden of SSI and make a case for better preventative measures pre-surgery. This will involve HES IP data, expected output in within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

Outputs relating to Objective 3 (Public Access Health iQ Insight Reports):

Health iQ will continue to publish reports for public access, either via the Health iQ website (http://www.healthiq.co.uk/public-reports) or through approved partners such as Royal Colleges, Universities and Patient Groups. Reports published in 2018:

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.

Reports planned:

1. Winter pressures report (exp Q4 2018): Analysis of the winter pressure burden across Provider Trusts.

2. IV Infusion Demand Analysis (exp Q1 2019): Breakdown of the current demand for IV infusion services by specialty, compared to the previous 3 years.

3. Diagnostic testing of cardiology patients (see below, exp Q2 2019).

Regarding HES CC data specifically:

This data will be used for research and analysis projects (Objective 2), as well as to produce public access reports (Objective 3). An example of one of each of these usages is outlined below, this is indicative of the kind of work Health iQ will be doing:

1. Research study: Descriptive analysis of the RSV (Respiratory Syncytial Virus) pathway and associated health burden of underlying risk factors. Health iQ will conduct a study looking at patients with RSV, to uncover the key risk factors underlying the condition and the associated healthcare resource burden of each of these groups. This will help future treatment planning, in particular to identify groups of patients who should be targeted for treatment. Expected completion date: within 3 months of signing the DSA (circa end of 2018/beginning of 2019).

2. Public access report: Optimal use of diagnostic testing for Cardiology. An angiography is an expensive, invasive diagnostic procedure given to certain cardiology patients. Non-invasive, cheaper alternatives exist which are suitable for many patients. Health iQ will conduct an analysis of the proportion of angiography procedures vs a range of diagnostic testing alternatives (MRI angio, CT angio, stress echo) by Provider Trust. This report will be made freely available to any user and published via a dedicated page on the Health iQ website. Target date: Q2 2019.

Health iQ has provided examples below of how the data has been used, including the benefits to healthcare that have resulted from this use. These are typical of the type of usage their customers offer to the NHS. Health iQ have listed some of the main benefits and will continue to provide (on renewal of the data) further examples of what specific benefits have been given through the use of the data.

Relating to Objective 1 (Vantage System and Related Support):

A growing user base across NHS and non-NHS, hence a greater number of users benefiting from the intelligence provided by the tool.

Relating to Objective 2 (Reports, Studies and Analysis):

1. Co-authored a poster titled Health-Care Resource Utilization following Trabeculectomy: An Analysis of English Hospital Episode Statistics (HES) Data͛͘The study helped to demonstrate the value of new interventions with comparable interocular pressure and less resource burden.

2. Worked with Salford Royal NHS Foundation Trust to analyse the pathway of MS patients and compare to the NICE recommended standard, hence identifying any deviation from best practice.

3. Developed a Mortality Risk Predictor algorithm for patients undergoing a range of surgical procedures, based on criteria such as age, co-morbid conditions and procedure type. This allowed Health iQ to produce a risk index which can be used to guide decision-making prior to surgery.

4. Conducted a study titled Characterisation of Atrial Fibrillation and Bleeding Risk Factors with Chronic Lymphocytic Leukaemia. The aim was to identify risk factors for AF or bleeding for CLL patients, to support the treatment of these patients with appropriate medication.

Relating to Objective 3 (Public Access Health iQ Insight Reports):

Published reports are listed here: (http://www.healthiq.co.uk/public-reports):

1. Market intelligence report on the Novel Oral Anti-Coagulant (NOAC) market: analysis of the anti-coagulant market by Provider Trust, incorporating GP prescribing and HES data.

2. Report on DVT activity: deep vein thrombosis related activity volume and spend by Provider Trust.

3. Ophthalmology hospital episode data report: bringing together a range of indicators relating to ophthalmology treatment across all Provider Trusts.