NHS England - DSfC - NHS England & Improvement Data Platform

NHS England and NHS Improvement (NHSE/I) will carry out analysis on a variety of pseudonymised datasets. This collection of datasets has been referred to as the “temporary National Repository” (tNR) and National Commissioning Data Repository (NCDR), but is now know as the NHS England & Improvement Data Platform.

In 2019 NHS England and NHS Improvement came together under one board as announced here https://www.england.nhs.uk/2018/03/nhs-england-and-nhs-improvement-together/

The requested datasets are required to ensure that NHS E/I can meet its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N,s23) and to meet the requirements of the Five Year Forward View. The objective for processing can be summarized as the provision of an ad-hoc and routine analysis and reporting service to support the work of NHS E/I in the following responsibility areas:

1. Proactive management of commissioned services – including contract management, performance management, needs and inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities

2. Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities

3. Data quality analysis and data quality management, to ensure data processing has been carried out effectively

4. Advanced analytics to support evaluation of service transformation.

In general, access to and linkage of the data into NCDR has permitted NHS E/I to carry out proactive management of commissioned services, which includes contract management, performance management, needs and inequalities analysis, benchmarking, service reviews as well as development, planning, budgets and allocations and general commissioning assurance activities. An example of this is where service reviews in terms of access have taken place and the findings showed that the uptake was low due to location of the service. With the analysis and intelligence gained from using the data, the service has been relocated to a more accessible place. Future access and analysis of the data will confirm the anticipated benefits that the service is reaching and is accessible by more people.

Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities, have also been supported by developing and using dashboards to support decision making at all levels within NHS E/I. The dashboards have been a valuable resource of information to demonstrate areas of innovation and improvement and share best practice.

Access to the data, has helped drive understanding of data quality analysis and data quality management. NHS E/I have been able to identify the gaps of coverage and quality in certain areas; for example, feeding back to NHS Digital of missing data items from the MHSDS data set. Working jointly to understand the issues have helped resolve some of these data concerns, from both commissioner and provider perspectives.

To better understand the relationship between physical and mental health, NHS E/I will link physical and mental health record level data. This is an area where the evidence is currently relatively weak. Linking this data will ensure commissioners can understand full patient pathways for their patients and plan their care, for example NHS E/I cannot currently answer questions such as whether patients with mental health issues are at a higher risk of particular outcomes (e.g. hospital admissions, re-admissions, increased lengths of stay).

It is anticipated that NHS E/I will develop this resource and request additional datasets from NHS Digital. Any additional datasets will only be included in this agreement subject to application to NHS Digital. The reasons for needing the datasets included in this agreement are as follows:

SUS (A&E, OP, APC, and ECDS):

SUS data is used extensively in local, regional and national performance management, in the development of national policies (e.g. A&E plan, demand and capacity modelling for elective care) and in resource and activity planning.

SUS will also contribute to:

1. Effective performance and contract management of the health and care system

2. Reducing the burden on Local Providers through eventual cessation of daily sitreps (situation report showing patient flow through A&E to help identify and make improvements to systems) which will be replaced by ECDS daily flows

Mental Health (MHMDS, MHLDDS, MHSDS) and Assuring Transformation (AT):

The 2016 Five Year Forward View for Mental Health report from the Mental Health Taskforce sets out the start of a ten-year journey for the transformation of mental health services. The Mental Health data is crucial in monitoring progress against the Five Year Forward View.

MHSDS data has also been expanded to include extensive information on people with learning disability and/or autism. The annual learning disability provider census, which ran from 2013-15 has been stood down, and all relevant content is now included within MHSDS. In addition, the content of the commissioner-based Assuring Transformation (AT) data collection has been included within MHSDS, with a goal to stand down AT when MHSDS data quality and completeness reach acceptable levels. Both the census and AT cover only inpatient care. There is currently no other data set which gives details of specialist community and outpatient services used by people with learning disability and/or autism. This is a high-profile policy area and it is important that NHS E/I can monitor the quality and completeness of Mental Health data, so that this data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. Access to patient-level data will also allow more detailed modelling and segmentations than is available through published data.

NHS E/I therefore needs to be able to monitor the quality and completeness of Mental Health data, so that the data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. As there is a requirement for further segmentation beyond the existing Data Quality reporting by NHS Digital, patient-level data is required. This is also true for other elements of Mental Health data (e.g. early intervention in psychosis) where NHS E/I have set-up aggregate data collections from providers until the quality of MHSDS can be improved. This increases burden and causes confusion.

Detailed patient-level data is also required to compare Assuring Transformation and MHSDS inpatient data. This is necessary to identify under- and over-reporting in MHSDS (compared to AT) and to identify where patient records are inconsistent across the two data sets. Assuring Transformation is currently being used to monitor inpatient trajectories as part of the three-year national transformation plan ‘Building the right support’. If the monitoring data set switches to MHSDS before the end of this three-year period, NHS E/I needs to have absolute confidence that the two data sets are comparable and compatible.

The need for increased access to Mental Health and IAPT data is widespread given the relative lack of evidence (as compared to measuring physical health), despite £34 billion being spent each year on mental health (source: MH FYFV). The data will allow NHS E/I to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the MH FYFV, such as waiting time standards for early intervention in psychosis. Data access will facilitate the development of new standards e.g. on eating disorders or out of area placements (where patient-level data will allow us to monitor the impact of various thresholds). To monitor progress against policy programmes NHS E/I need high quality data, and access to Mental Health and IAPT will allow NHS E/I to assist in driving up quality, and cease the aggregate data collections which are currently in place (so reducing burden on providers and administrative costs).

Improving Access to Psychological Therapies (IAPT) (including additional payment data, and wave 1+2 pilot sites):

The Improving Access to Psychological Therapies (IAPT) programme began in 2008 and has transformed treatment of adult anxiety disorders and depression in England. Over 900,000 people now access IAPT services each year, and the Five Year Forward View for Mental Health committed to expanding services further alongside improving quality. IAPT services provide evidence based treatments for people with anxiety and depression (implementing NICE guidelines).

In addition, there is a strong policy need to understand the linkage between physical and mental health. Physical and mental health are closely linked – people with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people – one of the greatest health inequalities in England. Two thirds of these deaths are from avoidable physical illnesses, including heart disease and cancer, many caused by smoking. In addition, people with long term physical illnesses suffer more complications if they also develop mental health problems.

To measure the impact of new integrated IAPT services and inform future rollout, NHS E/I has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS.

Additionally, IAPT payment data is requested to aid the testing and implementation of a currency model for IAPT services that is predicated upon the delivery of outcomes and quality metrics related to treatment that are currently captured within the IAPT dataset.

Other benefits include enabling the principle of the money following the patient, which is a key enabler of the policy of attaining parity between mental health and physical health. This can only be achieved by an appropriate balance of resources.

The Five Year Forward View for Mental Health and Implementing the Five Year Forward View for Mental Health include commitments to expand Improving Access to Psychological Therapies (IAPT) services to meet 25% of need by 2020/21. Most of the expansion will be in ‘Integrated IAPT’ services, co-located in and integrated with physical health services, and focused on people with anxiety/depression in the context of long-term physical health problems and/or people with distressing and persistent medically unexplained symptoms (MUS). The expansion is expected to deliver quality improvements across local health economies that would enable better planning of resources so they are utilised more effectively.

To support the development of integrated IAPT services, pilots are being supported as Integrated IAPT Early Implementers in 2016/17 and in 2017/18. Early Implementers will work collaboratively to design and implement high quality new services, and modify clinical pathways.

It is anticipated that with a more joined up approach there will be an improvement in access to services for patients who need treatment of co-morbid physical and mental health problems. The aim is to ensure that patients have the access they need as and when required with a more streamlined care pathway. Therapists will be co-located within long term conditions / medically unexplained symptoms (MUS) care pathways as part of multidisciplinary teams.

NHS E/I is supporting Early Implementer pilot sites to deliver new Integrated IAPT services. To understand how Integrated IAPT services can be implemented and their effects, NHS E/I have commissioned an analysis of the impact of ’Integrated IAPT’ services on health outcomes and healthcare utilisation. The aim of this work is to collect evidence to build a strong case for commissioners to support a further rollout of Integrated IAPT and to understand new ways of working.

Analysis of these dimensions will be vital in informing the future roll-out of integrated IAPT services, and the IAPT data included in this agreement is required to carry out this analysis.

To measure the impact of new integrated IAPT services and inform future rollout, NHS E/I has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS.

Local 111 Data:

44 lead CCGs already have a contract in place for 111 services and there are currently different models for how 111 services are commissioned and integrated within a locality. By collecting 111 data centrally at a national level, local best practice can be identified through benchmarking and provide the evidence to better understand the most effective model for integration of the various services associated with urgent and emergency care. In order to do this, NHS E/I requires CCGs to continue to collect data from their local services and provide specific metrics for Urgent & Emergency Care (UEC) so that this is also available in the national UEC Dashboard that North of England Commissioning Support Unit will collate for NHS E/I nationally. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements).

The national UEC Dashboard will enable both CCGs and NHS E/I to have a consistent way of reviewing UEC services, which will be captured in all CCG DSAs (in addition to this NHS E/I agreement). It will also provide a consistent method for pathway analysis, so that CCGs can compare and contrast their performance with other UEC models across the country. Linkage through to their own local reporting will further allow them to better understand their local pathways.

The proposed approach is the provision of a single national system, white-labelled and provided locally to CCGs. The RAIDR-111 dashboard is a tool specifically developed by North of England Commissioning Support Unit (NECS) to support the UEC system. RAIDR-111 will deliver a single yet comprehensive view of the Integrated Urgent Care system nationally, meeting the needs of many differing audiences – NHSE, STPs, A&E Delivery Boards, and CCGs. The dashboard needs to combine 111 call outcome data with the linked secondary care SUS pseudonymised record level data, showing A&E attendance and treatment received. The dashboard provides a single version of the truth accessible and drillable at national, regional, STP, and CCG level – all able to be aggregated up and down, at the fingertips of the users. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements).

NHS Digital will link the local 111 data with a number of fields from national SUS data in order to generate the dataset required to populate the urgent care dashboard. This linked 111/SUS data set have the consistent pseudonym applied and subsequent upload to the NCDR. This will enable the urgent care dashboard to be populated, which will allow NHS E/I to understand and benchmark urgent care patient flows and service provision.

Further linkage with other NCDR data sets is needed in order to fully understand the activities, pathways and outcomes of patients that enter the system via the 111 service. These data sets will include wider SUS data (APC, OP, A&E), IAPT and the mental health data sets (MHMDS, MHLDDS, MHSDS).

South Central & West CSU (SCW) have also been commissioned to undertake work on behalf of NHS E/I in relation to the 111 data. SCW will utilise the data to assess whether increasing the proportion of 111 calls handled by a clinician reduces the proportion of callers that subsequently attend A&E as well as understanding the impact on ambulance dispositions and GP dispositions.

The data will be used to understand the impact on the whole Integrated Emergency Care system of an increase in the resources in the Clinical Assessment Service (CAS) of 111. The data will be used to show any change in disposition of the patients within the 111 system and any impact that it has on the wider system of urgent care service providers.

In order for the evaluation to effectively establish the activity, disposition and impact changes SCW will require national data. This will enable changes in services as a result of wider factors (such as demographics, seasonality and national drivers such as the recommendations coming out of the Next Steps on the Five Year Forward View) to be taken into account.

Community (CYPHS, CSDS – Community Services Data Set (replacing CYPHS)):

NHS E/I requires access to community data to enable the comparison of outcomes from community healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities.

NHS E/I also requires community data to support allocations analysis in order to adhere to statutory duties around allocation of budgets for commissioning NHS services, and in doing so adhering to the principle of ensuring equal access for equal need. Although NHS E/I has statistical models to predict the need for different health services across the country to inform the allocations process, there is currently no model for community services due to a lack of robust data at the national level.

The CYPHS dataset will be undergoing the removal of the age restriction making it an all ages dataset (CSDS). There will also be additional development of this dataset resulting in a new specification.

Maternity Services Data Set (MSDS) including currency extract:

NHS E/I requires access to maternity data to enable the comparison of outcomes from maternity healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities. This data is required to ensure NHS E/I can satisfy its statutory responsibility to assure maternity services that are commissioned, changed or redesigned by CCGs and support the development of relevant health and care policies and financial allocations.

NHS E/I also requires national maternity data in order to refresh the allocation formula to inform the next allocations round. Access to maternity patient level data will support the work will enable NHS E/I to further develop currencies for maternity services.

Diagnostic Imaging Dataset (DID):

National DID data is required by NHS E/I to understand the quality of care and patient outcomes. NHS E/I commission all specialised services activity for two diagnostic tests - PET-CT and Cardiac MRI, and therefore requires access to the relevant data for effective commissioning of these.

Furthermore, the dataset provides a more complete picture of all imaging activity including those performed at mobile/independent sector diagnostic units and is therefore more complete than local commissioning flows that are currently received. It will be used alongside other data sources (such as SUS) to undertake specific commissioning activities, including creation of commissioning dashboards, analysis of imaging activity and improving the understanding of diagnostic services by diagnostic modality.

NHS E/I has been granted access to a subset of test DIDs data, which contains over 100 million records. Access to this data facilitated an understanding of the distribution of the time between a test being requested and actually carried out by type of test, provider, by some patient characteristics and over time. This is key to deepening the understanding of what characteristics are associated with the longest delays; particularly with respect to cancer diagnoses, the early detection of which is a key objective in the NHS Long Term Plan. Access to the full dataset on a regular basis will significantly improve understanding of the elective patient pathway from initial outpatient to final treatment. This access will also increase visibility of which parts of the care pathways need improvement where delays often occur (for example), and support improvement programmes which analyse diagnostic waiting times to identify demographic variability of service, inequality in treatment provision and variation in treatment outcomes in relation to length of time between referral and diagnosis.

The DID dataset is expected to be completed by all providers of NHS services, and as such covers independent sector providers for PET CT etc. which NHS E/I’s existing data flows might not cover. It also captures all imaging performed at mobile diagnostic units and therefore is likely to be more complete than current commissioning flows. Release of DID data will allow NHS E/I to investigate these underlying concerns around coverage and where the gaps are.

The DID data would be linked with patient level monitoring received as part of the commissioning process, as well as costing flows such as the local price information, in order to understand the cost of the service. The data would also be linked with SUS.

NHS E/I will be primarily focusing on cardiac MRI and PET CT as these services are commissioned centrally irrespective of whether the patient would traditionally be paid for by CCG or NHS E/I.

Access will also enable line by line reconciliation with patient level flows, following which NHS E/I could consider turning off the local data flow, in favour of DID, which would release significant burden on trusts.

Cancer Waiting times (CWT):

NHS E/I requires access to CWT data so it can be used to monitor times taken to diagnose and treat patients with cancer across the country, and ensuring that wait times are in line with the expectations and rights of patients in the NHS Constitution. The CWT data is also needed to enable the comparison of cancer waiting times from NHS Providers, to understand the scope and scale of variation across the national, regional and sub-regional areas.

The data will be used to:

• Monitor cancer waiting times targets at national and regional levels.

• Identify variances in waiting times across the country and focus on improving the services and reducing inequalities.

• Produce monthly and quarterly Official Statistics.

• Regional teams and the Commissioning Operations Directorate will use aggregate data for the purpose of performance management.

• investigate these underlying concerns around coverage and where the gaps are.

• Review and plan service improvements

Comparison of performance by tumour type aggregate reports will provide insight into how adjustments and general operation of the CWT dataset and guidance rules apply in the system, and whether policy decisions need to be made to amend the dataset and rules to reflect changing performance or volumes within CWT.

The overall aim of this type of additional analysis would be to support improvements to cancer patients survival and experience. The NHS Long Term Plan set out a number of ambitions to be met by 2028 including increasing the proportions of patients staged 1 or 2 from around half now to three-quarters. Achieving this means that from 2028, 55,000 more people each year will survive their cancer for at least five years after diagnosis. For these, improvements to ensure optimal diagnostic and treatment pathways and nationally agreed processes are key, and require NHS E/I policy teams to be able to analyse the Cancer Waiting Times dataset to identify improvements.

The CWT historical data will be required to provide baselines of previous cancer waiting times going back at least 6 years. This will allow retrospective analyses to confirm that interventions put in place to reduce the cancer waiting times, have brought the length of time patients have to wait for a confirmed diagnosis down. Access to data will also identify the quality of the data provided and where focus can be prioritised to support the local healthcare systems.

The NHS E/I requirement for the CWT data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Civil Registration of Deaths and Diagnostic Imaging data. This will be used to understand how local systems are working effectively, such that cancer is diagnosed and treated quicker and cancer survival rates are increasing at a National, Regional and sub-regional level.

Civil Registration of Deaths (CR Deaths):

Mortality is one of the measures of patient outcomes, particularly when that death is at a young age or from a cause that may have been prevented by a healthcare intervention.

There is a Secretary of State ambition to reduce the rate of stillbirths and neonatal deaths by 50% by 2025, for which the maternity transformation programme has been set up to achieve this ambition. To support this ambition there is a requirement to understand the factors that contribute to still births and neonatal deaths.

By having access to the Civil Registration of Deaths data, NHS E/I will be able to understand the drivers and patterns of mortality as well as premature mortality. This would help inform of the NHS treatments that those patients have received.

As part of the Long Term Plan, access to this data would also permit analyses that would not be possible from the ONS publications, for example to identify the still birth rate for women from a BAME background who live in the most deprived areas. This would highlight where service provision is not adequate and allow focus and interventions to be put in place with a view to reduce the levels of still births.

From access to this data NHS E/I, would be able to understand reasons why patients are dying at a National, Regional and sub-regional level and identify what additional support services could be put in place to prevent many of these deaths. Part of the analyses would also show where patient are dying e.g. are patients dying at hospitals due to hospices closing due to Local authorities withdrawing support, or is there a problem at a particular trust.

NHS E/I requires the data to feed into the Clinical Pathway dashboard which contain measures:

• Mortality rate from serious emergency conditions (7 days)

• Mortality rate from serious emergency conditions (30 days)

• Case fatality rate from serious emergency conditions

These measures help validate programs implemented to improve patient pathway e.g. High users unable to validate if the process to help patients find the best support are working, or did the patient die.

The dashboard provides guidance to make Urgent Emergency Care (UEC) systems aware of issues relating to patient outcomes and clinical effectiveness. This will inform long term strategic planning and monitor change to improve the quality of UEC.

The NHS E/I requirement for the CR Deaths data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Maternity. This will be used to understand how local systems are working effectively, such that Services and interventions put in place to prevent people from dying early are effective and living longer at a National, Regional and sub-regional level.

Patient Reported Outcome Measures (PROMs)

NHS E/I requires access to Patient Reported Outcome Measures data to enable the comparison of outcomes from healthcare services. This data assesses the quality of care delivered to NHS patients from the patient perspective.

The data will be used to understand variation and drivers in outcomes as reported by patients, and to explore how they differ in relation to patients undergoing the same set of procedures (hip replacements, knee replacements, groin hernia, varicose veins) within NHS providers. The data will also permit viewing patient outcomes at a National, Regional and sub-regional levels. It will provide NHS E/I details of the quality of care provided country wide, and focus on where progress can be made to ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities.

NHS E/I will require at least the last 6 years of data to start building the retrospective views of the data, and baseline how patients outcomes have changed historically.

PROMs data will also be used alongside a number of fields from the National SUS data in order to develop a dataset that will be used to generate a further analyses and insight that ensures NHS E/I can satisfy its statutory duties part of which includes a responsibility to consider the economic, social and environmental benefits to be achieved through commissioning.

National Diabetes Audit data (NDA):

NHS E/I requires access to the full range of National Diabetes Audit data to;

• assess local practice against National Institute for Health and Care Excellence (NICE guidelines)

• compare care and care outcomes with similar services and organisations

• identify gaps or shortfalls that are priorities for improvement

• identify and share best practice

• provide comprehensive national pictures of diabetes care and outcomes in England

NHS E/I has a statutory duty (under the Health and Social Care Act (2012)) to conduct an annual assessment of every CCG in England. The NDA data will be used to produce the Clinical Commissioning Group Improvement and Assessment Framework (CCGIAF) ratings for indicator 103b. Indicator 103b evaluates newly diagnosed people with diabetes (diagnosed less than a year) attend a structured education course. NHS E/I monitors the Clinical Commissioning Groups to ensure that the number of diabetes patients attending structured education are increasing.

Poor management can be associated with higher risk of the microvascular complications of diabetes (eye disease and blindness; kidney disease and kidney failure; foot disease, foot ulceration and amputation) and higher risk of cardiovascular disease (heart attack, angina, heart failure, stroke, and amputation). As such, NICE recommends that newly diagnosed diabetes patients attend a structured education course within 12-months of diagnosis in order to improve understanding, empowerment and self-management of diabetes. NHS England recognises that socio-economic factors will have a key impact upon the success of this.

Whilst diabetes care delivery and treatment targets are recommended in order to both monitor for the onset of diabetes complications and to minimise the risk of onset of diabetes complications, structured education is recommended to support self-management in order to achieve the same goals, as well as to achieve better understanding of the disease and better quality of life with diabetes.

The National Diabetes Audit data will also be required to monitor progress on the Transformation Funding provided to the Diabetes programme.

The Diabetes Transformation Funding was allocated to CCGs who had successfully bid for funding during 2017/18 to fund four separate workstreams for an initial two-year period as follows:

• Increase the treatment target attainment among CCGs and reduce the variation between CCGs to improve outcomes for patients with diabetes and reduce complications

• Increase attendance at structured education and thus improve self-management and treatment target attainment

• Establish or expand Multi-disciplinary footcare teams to provide a dedicated service improving outcomes, reduce the length of stay and the number of amputations

• Implement or increase the Diabetes inpatient specialist nurse provision to provide support and education to inpatients with diabetes to reduce the complications and provide training

NHS E/I will require this data to be fed into a reporting dashboard for the Diabetes Transformation Programme Board, that is to be updated on a regular basis with data from NDA, National SUS, National Diabetes Inpatient Audit data (NaDIA).

NHS E/I will require at least the last 10 years of data to start building the retrospective views of the data, and baseline how delivery of diabetes care has changed historically.

Clinical Registry Data:

NHS E/I requires access to data collected within Clinical Registries, Databases and Audits. Part of NHS E/I’s responsibility oversees the budget, planning, delivery and day-to-day operation of the commissioning side of the NHS in England as set out in the Health and Social Care Act 2012.

Every year NHS E/I recommissions, commissions or procures health services from health service providers. It is a complex process, involving the assessment and understanding of a population’s health needs, the planning of services to meet those needs and securing services on a limited budget, then monito

Any outputs to 3rd parties not included as Data Controller/Processor in this application/agreement must be aggregated (with small number suppression applied in line with NHS Digital requirements).

All datasets will be used to:

1. Allow NHS E/I to meet its ongoing statutory duties under the NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23. Specifically – ‘to exercise its functions ensuring that health services are provided in an integrated way where this would improve quality and outcome of services and reduce inequalities’.

2. Realise data quality improvements initiatives including reports to ensure that NHS E/I data processing has been carried out correctly (e.g. expected volume of specialised activity service line codes derived).

3. Provide an aggregate activity and finance report which will be used to populate an NHS E/I integrated activity and finance report for the monthly NHS E/I Executive Group Meeting. This has now been introduced (the benefits from this, and related SUS analyses included in the following section).

4. Analyse the impact of changes to NHS commissioning business rules (e.g. tariff changes, commissioner assignment, specialised services identification rules, HRG grouping).

5. Facilitate proactive management of NHS E/I directly commissioned services using pseudonymised or aggregate data (with small number suppression) only. (This is dependent on the analysis requirement as to whether the output used is pseudonymised or aggregate data.)

6. Enhance statistical analysis to facilitate proactive management of transformation programmes by local health systems on behalf of NHS E/I.

7. Monitor and analyse outpatient and community services; alternatives to inpatient care.

8. Monitor and analyse of new patient care pathways introduced to support the transformation of services for people with learning disability and/or autism. Access to data will specifically allow:

- Analysis of inpatient services and activity for people with learning disability and/or autism

- Analysis of outpatient and community services and activity for people with learning disability and/or autism

- Analysis of patient pathways as patients move between services

9. Analyse factors that result in high service usage.

10. Analyse the usefulness of diagnosis coding. Analysis will firstly focus on an understanding of the completeness and quality of coding in the dataset to provide a basis for any further analysis. NHS E/I would like to understand the completeness and validity of this data item, as well as identifying any geographical trends or particular providers which show problems with coding completeness. Access to the data would enable further discussion of coding practices in providers for casemix complexity. The intelligence can be shared through commissioning routes to help drive up coding completeness and accuracy to make any subsequent analysis more meaningful.

11. Analyse the spread of diagnoses geographically and demographically, to identify any trends as well as diagnoses recorded over time (given a robust starting point for coding accuracy and completeness). Admissions and readmissions and activity could also be analysed by diagnosis to better understand these trends and potential differences in provider models to inform commissioning decisions and service improvement.

12. Provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint. An analysis of restraint to identify any trends or outliers across providers, CCGs and sub-regions. The analysis will also include the frequency of restraint per patient and by ward type. This will highlight any areas for concern in the use of restraint to inform further discussions with commissioners. As the restraint type is added to the MHSDS in v2.0 this will provide further insight and areas for focus in discussions with commissioners. The aim of this is to provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint.

13. Achieve the service improvements required, in association with the findings from the report “The commissioning of specialised services in the NHS” by the National Audit Office (NAO), whereby the findings suggested that NHS E/I does not have sufficient information to drive service improvement in specialised commissioning.

14. Undertake health economic modelling using:

a. Analysis on provider performance against targets.

b. Learning from and predicting likely patient pathways for certain conditions, in order to influence early interventions and other treatments for patients.

c. Analysis of outcome measures for differential treatments, accounting for the full patient pathway.

15. Provide commissioning cycle support for grouping and re-costing previous activity.

16. Undertake commissioner reporting, including:

a. Summary by provider view - plan & actuals year to date (YTD).

b. Summary by Patient Outcome Data (POD) view - plan & actuals YTD.

c. Summary by provider view - activity & finance variance by POD.

d. Planned care by provider view - activity & finance plan & actuals YTD.

e. Planned care by POD view - activity plan & actuals YTD.

f. Provider reporting.

g. Statutory returns.

h. Statutory returns - monthly activity return.

i. Statutory returns - quarterly activity return.

j. Delayed discharges.

k. Quality & performance referral to treatment reporting.

17. Produce aggregate reports for CCG Business Intelligence.

18. Produce project / programme level dashboards.

19. Monitor acute / community / mental health quality matrix.

20. Facilitate clinical coding reviews / audits.

21. Undertake budget reporting with drill down capability to various levels.

22. Dashboards that are produced can cover all levels of the NHS – National, Regional and Sub-regional. The aim is to highlight trends of areas where in some cases NHSE are able to the levels of frequency of attendees accessing services.

23. NHS E/I is creating a population health management dashboard which will give each combined local health economy an aggregated (with small numbers suppressed) view of national data, facilitating benchmarking. This will inform NHS E/I about the relative performance of these emerging combined health and social care resources, facilitating information exchange and assurance that the new model of operation is being effective and meeting its objectives.

24. Any outputs produced from processing IAPT data must comply with the IAPT Disclosure Controls i.e.: o In order to prevent suppressed numbers from being calculated through differencing other published numbers from totals, all sub-national counts have been rounded to the nearest 5. o Sub-national rates (percentages) are rounded to the nearest whole percent to prevent disclosure. National rates are rounded to one decimal place.

Clinical Registry Data:

1. Routine reports and dashboards (where small numbers appear, these will be suppressed in line with NHS Digital guidance) so that all levels of NHS E/I (national, regional and sub regional) can access the views, analyses and insight. The intelligence gathered will be made available to drive improvement, efficiency as well as recognising ‘model hospital behaviours’ in specialist fields.

2. Produce analysis of variation and trends at National, Regional and Sub regional levels, not just from a provider view, but from a commissioning prospective as well.

3. Produce analysis of variation and drivers in outcomes as reported by each disease specific Registry, and to explore how they differ in relation to patients undergoing the same set of procedures and treatments in NHS providers.

4. Inform decisions of what can be done to reduce the variation and improve the care given to patients.

The specific Clinical Registry datasets included in this Data Sharing Agreement at the time of approval are:

- TARN, Trauma Audit and Research Network

- UK Renal Registry

- UK ROC, UK Rehabilitation Outcomes Collaborative

- NHFD, National Hip Fracture Database

- PICANet, Paediatric Intensive Care Audit Network

- BSR, British Spine Registry

Other clinical registry datasets may be added to this list, subject to approval from NHS Digital, including review and recommendation by the IGARD (independent expert group advising NHS Digital on the release of data).

e-Referral Service (eRS)

1. Manage demand, by understanding the quantity of assessments required NHS E/I are able to improve the care service for patients by predicting the impact on certain care pathways and ensure the secondary care system has enough capacity to manage the demand.

2. With the use of e-RS data NHS E/I will be able to identify inequalities and improvements of referrals (when comparing either trusts or CCGs) and therefore direct service redesign or invest to drive improvement.. NHS E/I are unable to see the contents of the referral letters.

3. NHS E/I may identify low priority procedures which could be directed to community-based alternatives and as such commission these services and deflect referrals for low priority procedures resulting in a reduction in hospital referrals.

4. Using pseudonymised e-RS data to provide intelligence will support the understanding of the quantity of assessments required and demand management; NHS E/I will be able to improve the care service for patients by predicting the impact on certain care pathways and support the secondary care system in ensuring enough capacity to manage the demand.

Births Data

1. Manage demand - by understanding the quantity of births taking place, NHS E/I are able to improve the care service for all types of settings for Births and ensure adequate funding is available.

2. In improving the quality of reporting, understanding the levels and types of Neonatal deaths and injuries that are occurring in NHS hospitals.

3. NHS E/I may identify causes or trends in care of Neonates of practices contributing to deaths and injuries.

4. Using pseudonymised and linked data report back on Indictor measures set out in the Long Term Plan to track outcomes of all births, and directing planning and delivering additional resources where identified.

Summary Hospital-level Mortality Indicator (SHMI)

NHS E/I plan to produce comparison benchmarks for hospital mortality indicators across different trusts.

SHMI data will inform various strategies, reports and evaluations for trusts.

SHMI data will support investigations in particular trust's mortality outcomes.

NHS 111 Online Dataset

A range of reports, and analysis processed in an ad-hoc manner to improve the understanding of scope and variation in patient pathways across the national, regional and sub-regional areas.

Medicines Dispensed in Primary Care

Primary Care Strategy Evaluation Reports; enabling better understanding of primary care medication across the healthcare system. Which in turn will support commissioning decision making within the NHS.

Medicines Value Programme;

There are over 300 indictors which the Right Care team also monitors. As an example this data will support the production of a Urinary Tract Infection (UTI) Focus pack, with dashboard reporting in progress.

The medicines value programme aims to improve health outcomes from medicines and ensure that NHS E/I and NHS Improvement are getting the best value from the NHS medicines bill. With aims to; enable people to access treatment that is clinically effective, based on the latest scientific discovery, as well as cost-effective.

Outcomes Based Healthcare (OBH)

Reports specific to commissioning queries and projects devised by NHSE/I.

Analysis specific to commissioning queries and projects devised by NHSE/I.

Ambulance Data Set (Pilot)

The NHS Long-Term Plan 2019 sets out a commitment to develop an ambulance data set to: “…bring together data from all ambulance services nationally in order to follow and understand patient journeys from the ambulance service into other urgent and emergency healthcare settings”. The Ambulance Data Set project seeks to deliver that long-term plan commitment. The project is owned by NHS England and NHS Improvement, operating with the authority of the Urgent and Emergency Care Transformation programme under the title of the ‘Joint Ambulance Improvement Programme’

Additionally, in response to the significant demand for Ambulance Services and data to support pandemic research and planning, NHS England and NHS Improvement have statutory responsibilities to continue to improve quality of health care services at all times, and requires data to do this.

Alcohol and Tobacco Dependence

Integrated into Dashboards and reports to monitor the impact and clinical outcomes of alcohol and tobacco dependence treatment services

University of Manchester

Feedback of findings is intended to be provided in a timely fashion to the Advisory Group and via short written briefings, webinars, and workshops. The University of Manchester plan to contribute to any re-commissioning processes, applying the results to understand how improvements can be made.

Health Innovation Manchester e-Referral Service (e-RS) Evaluation

HInM & WAHSN will produce reports to based upon the various metrics to support in determining the areas where Advice & Guidance provides the greatest clinical value. These reports will be used to identify areas where system enhancements contribute to significant changes to be shared with NHSE.

NHS England would not have been able to meet some of its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23) and to meet the requirements of the Five Year Forward View, without access to SUS data.

Yielded benefits have been partially met with the SUS data. Access has enabled NHS England to check the quality and efficiency of the health services that are commissioned and to plan for the future needs of patients.

Reports and dashboards have been created to demonstrate management of commissioned services, including contract management, performance management, inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities.

Access to Mental health and IAPT data has allowed NHS England to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the Mental Health Five Year Forward View, such as waiting time standards for early intervention in psychosis.

NHS England through accessing the data provided, have been able to develop insight and understanding of the services commissioned and ultimately view how this organisation can better support and improve the care and quality patients receive, as well as the ambition set out to help people live longer. There is a continuing requirement for NHS England to have access the data so that all objectives, purposes, outputs and benefits can continue to be realised.

Receiving the data extracts has enabled NHSE Specialised Commissioning to carry out it’s statutory duties such as meeting it’s contractual obligations in monitoring the activity being carried out in a specialised service, (e.g. Major Trauma and Renal Services), supporting the accurate calculation of the cost of services and payments to providers and supporting the improvement in data completeness and data quality related to a specialised service (e.g. receiving data on Complex Spinal Service from the British Spine Registry).

Examples of specific benefits of clinical data flows into the NCDR via the DARS:

Data received from the UK Renal Registry is also fundamental for developing intelligence to support the Service Review of Renal Services by Specialised Commissioning Service Transformation Team which began recently.

Data received from PICANet is supporting the implementation of the recommendations of the Service Review of Paediatric Critical Care and Surgery in Children (report published 2019).

Data received from UK ROC provides the basis of the currency for payment of Specialised Rehabilitation Services and without the data flow Specialised Commissioners would not be able to monitor the level of activity at each of the Specialised Rehabilitation Centres or calculate the appropriate payments for the activity the centres have carried out.

Additional benefits particular to COVID-19, January 2020 onwards:

Access to the clinical database data has also been vital this year to be able to monitor the change in planned or expected activity and variation in this as a result of the need to respond to COVID-19 – for example Renal Services – where there has been a massive upsurge in the need for dialysis directly related to meeting the need of patients with COVID-19, or the significant decrease in activity related to elective procedures for Complex Spinal Surgery, as theatres and staff have been re-deployed to meet the needs of patients hospitalised with COVID-19.

NHS England and NHS Improvement (NHSE/I) will carry out analysis on a variety of pseudonymised datasets. This collection of datasets has been referred to as the “temporary National Repository” (tNR) and National Commissioning Data Repository (NCDR), but is now know as the NHS England & Improvement Data Platform.

In 2019 NHS England and NHS Improvement came together under one board as announced here https://www.england.nhs.uk/2018/03/nhs-england-and-nhs-improvement-together/

The requested datasets are required to ensure that NHS E/I can meet its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N,s23) and to meet the requirements of the Five Year Forward View. The objective for processing can be summarized as the provision of an ad-hoc and routine analysis and reporting service to support the work of NHS E/I in the following responsibility areas:

1. Proactive management of commissioned services – including contract management, performance management, needs and inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities

2. Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities

3. Data quality analysis and data quality management, to ensure data processing has been carried out effectively

4. Advanced analytics to support evaluation of service transformation.

In general, access to and linkage of the data into NCDR has permitted NHS E/I to carry out proactive management of commissioned services, which includes contract management, performance management, needs and inequalities analysis, benchmarking, service reviews as well as development, planning, budgets and allocations and general commissioning assurance activities. An example of this is where service reviews in terms of access have taken place and the findings showed that the uptake was low due to location of the service. With the analysis and intelligence gained from using the data, the service has been relocated to a more accessible place. Future access and analysis of the data will confirm the anticipated benefits that the service is reaching and is accessible by more people.

Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities, have also been supported by developing and using dashboards to support decision making at all levels within NHS E/I. The dashboards have been a valuable resource of information to demonstrate areas of innovation and improvement and share best practice.

Access to the data, has helped drive understanding of data quality analysis and data quality management. NHS E/I have been able to identify the gaps of coverage and quality in certain areas; for example, feeding back to NHS Digital of missing data items from the MHSDS data set. Working jointly to understand the issues have helped resolve some of these data concerns, from both commissioner and provider perspectives.

To better understand the relationship between physical and mental health, NHS E/I will link physical and mental health record level data. This is an area where the evidence is currently relatively weak. Linking this data will ensure commissioners can understand full patient pathways for their patients and plan their care, for example NHS E/I cannot currently answer questions such as whether patients with mental health issues are at a higher risk of particular outcomes (e.g. hospital admissions, re-admissions, increased lengths of stay).

It is anticipated that NHS E/I will develop this resource and request additional datasets from NHS Digital. Any additional datasets will only be included in this agreement subject to application to NHS Digital. The reasons for needing the datasets included in this agreement are as follows:

SUS (A&E, OP, APC, and ECDS):

SUS data is used extensively in local, regional and national performance management, in the development of national policies (e.g. A&E plan, demand and capacity modelling for elective care) and in resource and activity planning.

SUS will also contribute to:

1. Effective performance and contract management of the health and care system

2. Reducing the burden on Local Providers through eventual cessation of daily sitreps (situation report showing patient flow through A&E to help identify and make improvements to systems) which will be replaced by ECDS daily flows

Mental Health (MHMDS, MHLDDS, MHSDS) and Assuring Transformation (AT):

The 2016 Five Year Forward View for Mental Health report from the Mental Health Taskforce sets out the start of a ten-year journey for the transformation of mental health services. The Mental Health data is crucial in monitoring progress against the Five Year Forward View.

MHSDS data has also been expanded to include extensive information on people with learning disability and/or autism. The annual learning disability provider census, which ran from 2013-15 has been stood down, and all relevant content is now included within MHSDS. In addition, the content of the commissioner-based Assuring Transformation (AT) data collection has been included within MHSDS, with a goal to stand down AT when MHSDS data quality and completeness reach acceptable levels. Both the census and AT cover only inpatient care. There is currently no other data set which gives details of specialist community and outpatient services used by people with learning disability and/or autism. This is a high-profile policy area and it is important that NHS E/I can monitor the quality and completeness of Mental Health data, so that this data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. Access to patient-level data will also allow more detailed modelling and segmentations than is available through published data.

NHS E/I therefore needs to be able to monitor the quality and completeness of Mental Health data, so that the data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. As there is a requirement for further segmentation beyond the existing Data Quality reporting by NHS Digital, patient-level data is required. This is also true for other elements of Mental Health data (e.g. early intervention in psychosis) where NHS E/I have set-up aggregate data collections from providers until the quality of MHSDS can be improved. This increases burden and causes confusion.

Detailed patient-level data is also required to compare Assuring Transformation and MHSDS inpatient data. This is necessary to identify under- and over-reporting in MHSDS (compared to AT) and to identify where patient records are inconsistent across the two data sets. Assuring Transformation is currently being used to monitor inpatient trajectories as part of the three-year national transformation plan ‘Building the right support’. If the monitoring data set switches to MHSDS before the end of this three-year period, NHS E/I needs to have absolute confidence that the two data sets are comparable and compatible.

The need for increased access to Mental Health and IAPT data is widespread given the relative lack of evidence (as compared to measuring physical health), despite £34 billion being spent each year on mental health (source: MH FYFV). The data will allow NHS E/I to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the MH FYFV, such as waiting time standards for early intervention in psychosis. Data access will facilitate the development of new standards e.g. on eating disorders or out of area placements (where patient-level data will allow us to monitor the impact of various thresholds). To monitor progress against policy programmes NHS E/I need high quality data, and access to Mental Health and IAPT will allow NHS E/I to assist in driving up quality, and cease the aggregate data collections which are currently in place (so reducing burden on providers and administrative costs).

Improving Access to Psychological Therapies (IAPT) (including additional payment data, and wave 1+2 pilot sites):

The Improving Access to Psychological Therapies (IAPT) programme began in 2008 and has transformed treatment of adult anxiety disorders and depression in England. Over 900,000 people now access IAPT services each year, and the Five Year Forward View for Mental Health committed to expanding services further alongside improving quality. IAPT services provide evidence based treatments for people with anxiety and depression (implementing NICE guidelines).

In addition, there is a strong policy need to understand the linkage between physical and mental health. Physical and mental health are closely linked – people with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people – one of the greatest health inequalities in England. Two thirds of these deaths are from avoidable physical illnesses, including heart disease and cancer, many caused by smoking. In addition, people with long term physical illnesses suffer more complications if they also develop mental health problems.

To measure the impact of new integrated IAPT services and inform future rollout, NHS E/I has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS.

Additionally, IAPT payment data is requested to aid the testing and implementation of a currency model for IAPT services that is predicated upon the delivery of outcomes and quality metrics related to treatment that are currently captured within the IAPT dataset.

Other benefits include enabling the principle of the money following the patient, which is a key enabler of the policy of attaining parity between mental health and physical health. This can only be achieved by an appropriate balance of resources.

The Five Year Forward View for Mental Health and Implementing the Five Year Forward View for Mental Health include commitments to expand Improving Access to Psychological Therapies (IAPT) services to meet 25% of need by 2020/21. Most of the expansion will be in ‘Integrated IAPT’ services, co-located in and integrated with physical health services, and focused on people with anxiety/depression in the context of long-term physical health problems and/or people with distressing and persistent medically unexplained symptoms (MUS). The expansion is expected to deliver quality improvements across local health economies that would enable better planning of resources so they are utilised more effectively.

To support the development of integrated IAPT services, pilots are being supported as Integrated IAPT Early Implementers in 2016/17 and in 2017/18. Early Implementers will work collaboratively to design and implement high quality new services, and modify clinical pathways.

It is anticipated that with a more joined up approach there will be an improvement in access to services for patients who need treatment of co-morbid physical and mental health problems. The aim is to ensure that patients have the access they need as and when required with a more streamlined care pathway. Therapists will be co-located within long term conditions / medically unexplained symptoms (MUS) care pathways as part of multidisciplinary teams.

NHS E/I is supporting Early Implementer pilot sites to deliver new Integrated IAPT services. To understand how Integrated IAPT services can be implemented and their effects, NHS E/I have commissioned an analysis of the impact of ’Integrated IAPT’ services on health outcomes and healthcare utilisation. The aim of this work is to collect evidence to build a strong case for commissioners to support a further rollout of Integrated IAPT and to understand new ways of working.

Analysis of these dimensions will be vital in informing the future roll-out of integrated IAPT services, and the IAPT data included in this agreement is required to carry out this analysis.

To measure the impact of new integrated IAPT services and inform future rollout, NHS E/I has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS.

Local 111 Data:

44 lead CCGs already have a contract in place for 111 services and there are currently different models for how 111 services are commissioned and integrated within a locality. By collecting 111 data centrally at a national level, local best practice can be identified through benchmarking and provide the evidence to better understand the most effective model for integration of the various services associated with urgent and emergency care. In order to do this, NHS E/I requires CCGs to continue to collect data from their local services and provide specific metrics for Urgent & Emergency Care (UEC) so that this is also available in the national UEC Dashboard that North of England Commissioning Support Unit will collate for NHS E/I nationally. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements).

The national UEC Dashboard will enable both CCGs and NHS E/I to have a consistent way of reviewing UEC services, which will be captured in all CCG DSAs (in addition to this NHS E/I agreement). It will also provide a consistent method for pathway analysis, so that CCGs can compare and contrast their performance with other UEC models across the country. Linkage through to their own local reporting will further allow them to better understand their local pathways.

The proposed approach is the provision of a single national system, white-labelled and provided locally to CCGs. The RAIDR-111 dashboard is a tool specifically developed by North of England Commissioning Support Unit (NECS) to support the UEC system. RAIDR-111 will deliver a single yet comprehensive view of the Integrated Urgent Care system nationally, meeting the needs of many differing audiences – NHSE, STPs, A&E Delivery Boards, and CCGs. The dashboard needs to combine 111 call outcome data with the linked secondary care SUS pseudonymised record level data, showing A&E attendance and treatment received. The dashboard provides a single version of the truth accessible and drillable at national, regional, STP, and CCG level – all able to be aggregated up and down, at the fingertips of the users. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements).

NHS Digital will link the local 111 data with a number of fields from national SUS data in order to generate the dataset required to populate the urgent care dashboard. This linked 111/SUS data set have the consistent pseudonym applied and subsequent upload to the NCDR. This will enable the urgent care dashboard to be populated, which will allow NHS E/I to understand and benchmark urgent care patient flows and service provision.

Further linkage with other NCDR data sets is needed in order to fully understand the activities, pathways and outcomes of patients that enter the system via the 111 service. These data sets will include wider SUS data (APC, OP, A&E), IAPT and the mental health data sets (MHMDS, MHLDDS, MHSDS).

South Central & West CSU (SCW) have also been commissioned to undertake work on behalf of NHS E/I in relation to the 111 data. SCW will utilise the data to assess whether increasing the proportion of 111 calls handled by a clinician reduces the proportion of callers that subsequently attend A&E as well as understanding the impact on ambulance dispositions and GP dispositions.

The data will be used to understand the impact on the whole Integrated Emergency Care system of an increase in the resources in the Clinical Assessment Service (CAS) of 111. The data will be used to show any change in disposition of the patients within the 111 system and any impact that it has on the wider system of urgent care service providers.

In order for the evaluation to effectively establish the activity, disposition and impact changes SCW will require national data. This will enable changes in services as a result of wider factors (such as demographics, seasonality and national drivers such as the recommendations coming out of the Next Steps on the Five Year Forward View) to be taken into account.

Community (CYPHS, CSDS – Community Services Data Set (replacing CYPHS)):

NHS E/I requires access to community data to enable the comparison of outcomes from community healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities.

NHS E/I also requires community data to support allocations analysis in order to adhere to statutory duties around allocation of budgets for commissioning NHS services, and in doing so adhering to the principle of ensuring equal access for equal need. Although NHS E/I has statistical models to predict the need for different health services across the country to inform the allocations process, there is currently no model for community services due to a lack of robust data at the national level.

The CYPHS dataset will be undergoing the removal of the age restriction making it an all ages dataset (CSDS). There will also be additional development of this dataset resulting in a new specification.

Maternity Services Data Set (MSDS) including currency extract:

NHS E/I requires access to maternity data to enable the comparison of outcomes from maternity healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities. This data is required to ensure NHS E/I can satisfy its statutory responsibility to assure maternity services that are commissioned, changed or redesigned by CCGs and support the development of relevant health and care policies and financial allocations.

NHS E/I also requires national maternity data in order to refresh the allocation formula to inform the next allocations round. Access to maternity patient level data will support the work will enable NHS E/I to further develop currencies for maternity services.

Diagnostic Imaging Dataset (DID):

National DID data is required by NHS E/I to understand the quality of care and patient outcomes. NHS E/I commission all specialised services activity for two diagnostic tests - PET-CT and Cardiac MRI, and therefore requires access to the relevant data for effective commissioning of these.

Furthermore, the dataset provides a more complete picture of all imaging activity including those performed at mobile/independent sector diagnostic units and is therefore more complete than local commissioning flows that are currently received. It will be used alongside other data sources (such as SUS) to undertake specific commissioning activities, including creation of commissioning dashboards, analysis of imaging activity and improving the understanding of diagnostic services by diagnostic modality.

NHS E/I has been granted access to a subset of test DIDs data, which contains over 100 million records. Access to this data facilitated an understanding of the distribution of the time between a test being requested and actually carried out by type of test, provider, by some patient characteristics and over time. This is key to deepening the understanding of what characteristics are associated with the longest delays; particularly with respect to cancer diagnoses, the early detection of which is a key objective in the NHS Long Term Plan. Access to the full dataset on a regular basis will significantly improve understanding of the elective patient pathway from initial outpatient to final treatment. This access will also increase visibility of which parts of the care pathways need improvement where delays often occur (for example), and support improvement programmes which analyse diagnostic waiting times to identify demographic variability of service, inequality in treatment provision and variation in treatment outcomes in relation to length of time between referral and diagnosis.

The DID dataset is expected to be completed by all providers of NHS services, and as such covers independent sector providers for PET CT etc. which NHS E/I’s existing data flows might not cover. It also captures all imaging performed at mobile diagnostic units and therefore is likely to be more complete than current commissioning flows. Release of DID data will allow NHS E/I to investigate these underlying concerns around coverage and where the gaps are.

The DID data would be linked with patient level monitoring received as part of the commissioning process, as well as costing flows such as the local price information, in order to understand the cost of the service. The data would also be linked with SUS.

NHS E/I will be primarily focusing on cardiac MRI and PET CT as these services are commissioned centrally irrespective of whether the patient would traditionally be paid for by CCG or NHS E/I.

Access will also enable line by line reconciliation with patient level flows, following which NHS E/I could consider turning off the local data flow, in favour of DID, which would release significant burden on trusts.

Cancer Waiting times (CWT):

NHS E/I requires access to CWT data so it can be used to monitor times taken to diagnose and treat patients with cancer across the country, and ensuring that wait times are in line with the expectations and rights of patients in the NHS Constitution. The CWT data is also needed to enable the comparison of cancer waiting times from NHS Providers, to understand the scope and scale of variation across the national, regional and sub-regional areas.

The data will be used to:

• Monitor cancer waiting times targets at national and regional levels.

• Identify variances in waiting times across the country and focus on improving the services and reducing inequalities.

• Produce monthly and quarterly Official Statistics.

• Regional teams and the Commissioning Operations Directorate will use aggregate data for the purpose of performance management.

• investigate these underlying concerns around coverage and where the gaps are.

• Review and plan service improvements

Comparison of performance by tumour type aggregate reports will provide insight into how adjustments and general operation of the CWT dataset and guidance rules apply in the system, and whether policy decisions need to be made to amend the dataset and rules to reflect changing performance or volumes within CWT.

The overall aim of this type of additional analysis would be to support improvements to cancer patients survival and experience. The NHS Long Term Plan set out a number of ambitions to be met by 2028 including increasing the proportions of patients staged 1 or 2 from around half now to three-quarters. Achieving this means that from 2028, 55,000 more people each year will survive their cancer for at least five years after diagnosis. For these, improvements to ensure optimal diagnostic and treatment pathways and nationally agreed processes are key, and require NHS E/I policy teams to be able to analyse the Cancer Waiting Times dataset to identify improvements.

The CWT historical data will be required to provide baselines of previous cancer waiting times going back at least 6 years. This will allow retrospective analyses to confirm that interventions put in place to reduce the cancer waiting times, have brought the length of time patients have to wait for a confirmed diagnosis down. Access to data will also identify the quality of the data provided and where focus can be prioritised to support the local healthcare systems.

The NHS E/I requirement for the CWT data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Civil Registration of Deaths and Diagnostic Imaging data. This will be used to understand how local systems are working effectively, such that cancer is diagnosed and treated quicker and cancer survival rates are increasing at a National, Regional and sub-regional level.

Civil Registration of Deaths (CR Deaths):

Mortality is one of the measures of patient outcomes, particularly when that death is at a young age or from a cause that may have been prevented by a healthcare intervention.

There is a Secretary of State ambition to reduce the rate of stillbirths and neonatal deaths by 50% by 2025, for which the maternity transformation programme has been set up to achieve this ambition. To support this ambition there is a requirement to understand the factors that contribute to still births and neonatal deaths.

By having access to the Civil Registration of Deaths data, NHS E/I will be able to understand the drivers and patterns of mortality as well as premature mortality. This would help inform of the NHS treatments that those patients have received.

As part of the Long Term Plan, access to this data would also permit analyses that would not be possible from the ONS publications, for example to identify the still birth rate for women from a BAME background who live in the most deprived areas. This would highlight where service provision is not adequate and allow focus and interventions to be put in place with a view to reduce the levels of still births.

From access to this data NHS E/I, would be able to understand reasons why patients are dying at a National, Regional and sub-regional level and identify what additional support services could be put in place to prevent many of these deaths. Part of the analyses would also show where patient are dying e.g. are patients dying at hospitals due to hospices closing due to Local authorities withdrawing support, or is there a problem at a particular trust.

NHS E/I requires the data to feed into the Clinical Pathway dashboard which contain measures:

• Mortality rate from serious emergency conditions (7 days)

• Mortality rate from serious emergency conditions (30 days)

• Case fatality rate from serious emergency conditions

These measures help validate programs implemented to improve patient pathway e.g. High users unable to validate if the process to help patients find the best support are working, or did the patient die.

The dashboard provides guidance to make Urgent Emergency Care (UEC) systems aware of issues relating to patient outcomes and clinical effectiveness. This will inform long term strategic planning and monitor change to improve the quality of UEC.

The NHS E/I requirement for the CR Deaths data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Maternity. This will be used to understand how local systems are working effectively, such that Services and interventions put in place to prevent people from dying early are effective and living longer at a National, Regional and sub-regional level.

Patient Reported Outcome Measures (PROMs)

NHS E/I requires access to Patient Reported Outcome Measures data to enable the comparison of outcomes from healthcare services. This data assesses the quality of care delivered to NHS patients from the patient perspective.

The data will be used to understand variation and drivers in outcomes as reported by patients, and to explore how they differ in relation to patients undergoing the same set of procedures (hip replacements, knee replacements, groin hernia, varicose veins) within NHS providers. The data will also permit viewing patient outcomes at a National, Regional and sub-regional levels. It will provide NHS E/I details of the quality of care provided country wide, and focus on where progress can be made to ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities.

NHS E/I will require at least the last 6 years of data to start building the retrospective views of the data, and baseline how patients outcomes have changed historically.

PROMs data will also be used alongside a number of fields from the National SUS data in order to develop a dataset that will be used to generate a further analyses and insight that ensures NHS E/I can satisfy its statutory duties part of which includes a responsibility to consider the economic, social and environmental benefits to be achieved through commissioning.

National Diabetes Audit data (NDA):

NHS E/I requires access to the full range of National Diabetes Audit data to;

• assess local practice against National Institute for Health and Care Excellence (NICE guidelines)

• compare care and care outcomes with similar services and organisations

• identify gaps or shortfalls that are priorities for improvement

• identify and share best practice

• provide comprehensive national pictures of diabetes care and outcomes in England

NHS E/I has a statutory duty (under the Health and Social Care Act (2012)) to conduct an annual assessment of every CCG in England. The NDA data will be used to produce the Clinical Commissioning Group Improvement and Assessment Framework (CCGIAF) ratings for indicator 103b. Indicator 103b evaluates newly diagnosed people with diabetes (diagnosed less than a year) attend a structured education course. NHS E/I monitors the Clinical Commissioning Groups to ensure that the number of diabetes patients attending structured education are increasing.

Poor management can be associated with higher risk of the microvascular complications of diabetes (eye disease and blindness; kidney disease and kidney failure; foot disease, foot ulceration and amputation) and higher risk of cardiovascular disease (heart attack, angina, heart failure, stroke, and amputation). As such, NICE recommends that newly diagnosed diabetes patients attend a structured education course within 12-months of diagnosis in order to improve understanding, empowerment and self-management of diabetes. NHS England recognises that socio-economic factors will have a key impact upon the success of this.

Whilst diabetes care delivery and treatment targets are recommended in order to both monitor for the onset of diabetes complications and to minimise the risk of onset of diabetes complications, structured education is recommended to support self-management in order to achieve the same goals, as well as to achieve better understanding of the disease and better quality of life with diabetes.

The National Diabetes Audit data will also be required to monitor progress on the Transformation Funding provided to the Diabetes programme.

The Diabetes Transformation Funding was allocated to CCGs who had successfully bid for funding during 2017/18 to fund four separate workstreams for an initial two-year period as follows:

• Increase the treatment target attainment among CCGs and reduce the variation between CCGs to improve outcomes for patients with diabetes and reduce complications

• Increase attendance at structured education and thus improve self-management and treatment target attainment

• Establish or expand Multi-disciplinary footcare teams to provide a dedicated service improving outcomes, reduce the length of stay and the number of amputations

• Implement or increase the Diabetes inpatient specialist nurse provision to provide support and education to inpatients with diabetes to reduce the complications and provide training

NHS E/I will require this data to be fed into a reporting dashboard for the Diabetes Transformation Programme Board, that is to be updated on a regular basis with data from NDA, National SUS, National Diabetes Inpatient Audit data (NaDIA).

NHS E/I will require at least the last 10 years of data to start building the retrospective views of the data, and baseline how delivery of diabetes care has changed historically.

Clinical Registry Data:

NHS E/I requires access to data collected within Clinical Registries, Databases and Audits. Part of NHS E/I’s responsibility oversees the budget, planning, delivery and day-to-day operation of the commissioning side of the NHS in England as set out in the Health and Social Care Act 2012.

Every year NHS E/I recommissions, commissions or procures health services from health service providers. It is a complex process, involving the assessment and understanding of a population’s health needs, the planning of services to meet those needs and securing services on a limited budget, then monito

Any outputs to 3rd parties not included as Data Controller/Processor in this application/agreement must be aggregated (with small number suppression applied in line with NHS Digital requirements).

All datasets will be used to:

1. Allow NHS E/I to meet its ongoing statutory duties under the NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23. Specifically – ‘to exercise its functions ensuring that health services are provided in an integrated way where this would improve quality and outcome of services and reduce inequalities’.

2. Realise data quality improvements initiatives including reports to ensure that NHS E/I data processing has been carried out correctly (e.g. expected volume of specialised activity service line codes derived).

3. Provide an aggregate activity and finance report which will be used to populate an NHS E/I integrated activity and finance report for the monthly NHS E/I Executive Group Meeting. This has now been introduced (the benefits from this, and related SUS analyses included in the following section).

4. Analyse the impact of changes to NHS commissioning business rules (e.g. tariff changes, commissioner assignment, specialised services identification rules, HRG grouping).

5. Facilitate proactive management of NHS E/I directly commissioned services using pseudonymised or aggregate data (with small number suppression) only. (This is dependent on the analysis requirement as to whether the output used is pseudonymised or aggregate data.)

6. Enhance statistical analysis to facilitate proactive management of transformation programmes by local health systems on behalf of NHS E/I.

7. Monitor and analyse outpatient and community services; alternatives to inpatient care.

8. Monitor and analyse of new patient care pathways introduced to support the transformation of services for people with learning disability and/or autism. Access to data will specifically allow:

- Analysis of inpatient services and activity for people with learning disability and/or autism

- Analysis of outpatient and community services and activity for people with learning disability and/or autism

- Analysis of patient pathways as patients move between services

9. Analyse factors that result in high service usage.

10. Analyse the usefulness of diagnosis coding. Analysis will firstly focus on an understanding of the completeness and quality of coding in the dataset to provide a basis for any further analysis. NHS E/I would like to understand the completeness and validity of this data item, as well as identifying any geographical trends or particular providers which show problems with coding completeness. Access to the data would enable further discussion of coding practices in providers for casemix complexity. The intelligence can be shared through commissioning routes to help drive up coding completeness and accuracy to make any subsequent analysis more meaningful.

11. Analyse the spread of diagnoses geographically and demographically, to identify any trends as well as diagnoses recorded over time (given a robust starting point for coding accuracy and completeness). Admissions and readmissions and activity could also be analysed by diagnosis to better understand these trends and potential differences in provider models to inform commissioning decisions and service improvement.

12. Provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint. An analysis of restraint to identify any trends or outliers across providers, CCGs and sub-regions. The analysis will also include the frequency of restraint per patient and by ward type. This will highlight any areas for concern in the use of restraint to inform further discussions with commissioners. As the restraint type is added to the MHSDS in v2.0 this will provide further insight and areas for focus in discussions with commissioners. The aim of this is to provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint.

13. Achieve the service improvements required, in association with the findings from the report “The commissioning of specialised services in the NHS” by the National Audit Office (NAO), whereby the findings suggested that NHS E/I does not have sufficient information to drive service improvement in specialised commissioning.

14. Undertake health economic modelling using:

a. Analysis on provider performance against targets.

b. Learning from and predicting likely patient pathways for certain conditions, in order to influence early interventions and other treatments for patients.

c. Analysis of outcome measures for differential treatments, accounting for the full patient pathway.

15. Provide commissioning cycle support for grouping and re-costing previous activity.

16. Undertake commissioner reporting, including:

a. Summary by provider view - plan & actuals year to date (YTD).

b. Summary by Patient Outcome Data (POD) view - plan & actuals YTD.

c. Summary by provider view - activity & finance variance by POD.

d. Planned care by provider view - activity & finance plan & actuals YTD.

e. Planned care by POD view - activity plan & actuals YTD.

f. Provider reporting.

g. Statutory returns.

h. Statutory returns - monthly activity return.

i. Statutory returns - quarterly activity return.

j. Delayed discharges.

k. Quality & performance referral to treatment reporting.

17. Produce aggregate reports for CCG Business Intelligence.

18. Produce project / programme level dashboards.

19. Monitor acute / community / mental health quality matrix.

20. Facilitate clinical coding reviews / audits.

21. Undertake budget reporting with drill down capability to various levels.

22. Dashboards that are produced can cover all levels of the NHS – National, Regional and Sub-regional. The aim is to highlight trends of areas where in some cases NHSE are able to the levels of frequency of attendees accessing services.

23. NHS E/I is creating a population health management dashboard which will give each combined local health economy an aggregated (with small numbers suppressed) view of national data, facilitating benchmarking. This will inform NHS E/I about the relative performance of these emerging combined health and social care resources, facilitating information exchange and assurance that the new model of operation is being effective and meeting its objectives.

24. Any outputs produced from processing IAPT data must comply with the IAPT Disclosure Controls i.e.: o In order to prevent suppressed numbers from being calculated through differencing other published numbers from totals, all sub-national counts have been rounded to the nearest 5. o Sub-national rates (percentages) are rounded to the nearest whole percent to prevent disclosure. National rates are rounded to one decimal place.

Clinical Registry Data:

1. Routine reports and dashboards (where small numbers appear, these will be suppressed in line with NHS Digital guidance) so that all levels of NHS E/I (national, regional and sub regional) can access the views, analyses and insight. The intelligence gathered will be made available to drive improvement, efficiency as well as recognising ‘model hospital behaviours’ in specialist fields.

2. Produce analysis of variation and trends at National, Regional and Sub regional levels, not just from a provider view, but from a commissioning prospective as well.

3. Produce analysis of variation and drivers in outcomes as reported by each disease specific Registry, and to explore how they differ in relation to patients undergoing the same set of procedures and treatments in NHS providers.

4. Inform decisions of what can be done to reduce the variation and improve the care given to patients.

The specific Clinical Registry datasets included in this Data Sharing Agreement at the time of approval are:

- TARN, Trauma Audit and Research Network

- UK Renal Registry

- UK ROC, UK Rehabilitation Outcomes Collaborative

- NHFD, National Hip Fracture Database

- PICANet, Paediatric Intensive Care Audit Network

- BSR, British Spine Registry

Other clinical registry datasets may be added to this list, subject to approval from NHS Digital, including review and recommendation by the IGARD (independent expert group advising NHS Digital on the release of data).

e-Referral Service (eRS)

1. Manage demand, by understanding the quantity of assessments required NHS E/I are able to improve the care service for patients by predicting the impact on certain care pathways and ensure the secondary care system has enough capacity to manage the demand.

2. With the use of e-RS data NHS E/I will be able to identify inequalities and improvements of referrals (when comparing either trusts or CCGs) and therefore direct service redesign or invest to drive improvement.. NHS E/I are unable to see the contents of the referral letters.

3. NHS E/I may identify low priority procedures which could be directed to community-based alternatives and as such commission these services and deflect referrals for low priority procedures resulting in a reduction in hospital referrals.

4. Using pseudonymised e-RS data to provide intelligence will support the understanding of the quantity of assessments required and demand management; NHS E/I will be able to improve the care service for patients by predicting the impact on certain care pathways and support the secondary care system in ensuring enough capacity to manage the demand.

Births Data

1. Manage demand - by understanding the quantity of births taking place, NHS E/I are able to improve the care service for all types of settings for Births and ensure adequate funding is available.

2. In improving the quality of reporting, understanding the levels and types of Neonatal deaths and injuries that are occurring in NHS hospitals.

3. NHS E/I may identify causes or trends in care of Neonates of practices contributing to deaths and injuries.

4. Using pseudonymised and linked data report back on Indictor measures set out in the Long Term Plan to track outcomes of all births, and directing planning and delivering additional resources where identified.

Summary Hospital-level Mortality Indicator (SHMI)

NHS E/I plan to produce comparison benchmarks for hospital mortality indicators across different trusts.

SHMI data will inform various strategies, reports and evaluations for trusts.

SHMI data will support investigations in particular trust's mortality outcomes.

NHS 111 Online Dataset

A range of reports, and analysis processed in an ad-hoc manner to improve the understanding of scope and variation in patient pathways across the national, regional and sub-regional areas.

Medicines Dispensed in Primary Care

Primary Care Strategy Evaluation Reports; enabling better understanding of primary care medication across the healthcare system. Which in turn will support commissioning decision making within the NHS.

Medicines Value Programme;

There are over 300 indictors which the Right Care team also monitors. As an example this data will support the production of a Urinary Tract Infection (UTI) Focus pack, with dashboard reporting in progress.

The medicines value programme aims to improve health outcomes from medicines and ensure that NHS E/I and NHS Improvement are getting the best value from the NHS medicines bill. With aims to; enable people to access treatment that is clinically effective, based on the latest scientific discovery, as well as cost-effective.

Outcomes Based Healthcare (OBH)

Reports specific to commissioning queries and projects devised by NHSE/I.

Analysis specific to commissioning queries and projects devised by NHSE/I.

Ambulance Data Set (Pilot)

The NHS Long-Term Plan 2019 sets out a commitment to develop an ambulance data set to: “…bring together data from all ambulance services nationally in order to follow and understand patient journeys from the ambulance service into other urgent and emergency healthcare settings”. The Ambulance Data Set project seeks to deliver that long-term plan commitment. The project is owned by NHS England and NHS Improvement, operating with the authority of the Urgent and Emergency Care Transformation programme under the title of the ‘Joint Ambulance Improvement Programme’

Additionally, in response to the significant demand for Ambulance Services and data to support pandemic research and planning, NHS England and NHS Improvement have statutory responsibilities to continue to improve quality of health care services at all times, and requires data to do this.

Alcohol and Tobacco Dependence

Integrated into Dashboards and reports to monitor the impact and clinical outcomes of alcohol and tobacco dependence treatment services

NHS England would not have been able to meet some of its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23) and to meet the requirements of the Five Year Forward View, without access to SUS data.

Yielded benefits have been partially met with the SUS data. Access has enabled NHS England to check the quality and efficiency of the health services that are commissioned and to plan for the future needs of patients.

Reports and dashboards have been created to demonstrate management of commissioned services, including contract management, performance management, inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities.

Access to Mental health and IAPT data has allowed NHS England to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the Mental Health Five Year Forward View, such as waiting time standards for early intervention in psychosis.

NHS England through accessing the data provided, have been able to develop insight and understanding of the services commissioned and ultimately view how this organisation can better support and improve the care and quality patients receive, as well as the ambition set out to help people live longer. There is a continuing requirement for NHS England to have access the data so that all objectives, purposes, outputs and benefits can continue to be realised.

Receiving the data extracts has enabled NHSE Specialised Commissioning to carry out it’s statutory duties such as meeting it’s contractual obligations in monitoring the activity being carried out in a specialised service, (e.g. Major Trauma and Renal Services), supporting the accurate calculation of the cost of services and payments to providers and supporting the improvement in data completeness and data quality related to a specialised service (e.g. receiving data on Complex Spinal Service from the British Spine Registry).

Examples of specific benefits of clinical data flows into the NCDR via the DARS:

Data received from the UK Renal Registry is also fundamental for developing intelligence to support the Service Review of Renal Services by Specialised Commissioning Service Transformation Team which began recently.

Data received from PICANet is supporting the implementation of the recommendations of the Service Review of Paediatric Critical Care and Surgery in Children (report published 2019).

Data received from UK ROC provides the basis of the currency for payment of Specialised Rehabilitation Services and without the data flow Specialised Commissioners would not be able to monitor the level of activity at each of the Specialised Rehabilitation Centres or calculate the appropriate payments for the activity the centres have carried out.

Additional benefits particular to COVID-19, January 2020 onwards:

Access to the clinical database data has also been vital this year to be able to monitor the change in planned or expected activity and variation in this as a result of the need to respond to COVID-19 – for example Renal Services – where there has been a massive upsurge in the need for dialysis directly related to meeting the need of patients with COVID-19, or the significant decrease in activity related to elective procedures for Complex Spinal Surgery, as theatres and staff have been re-deployed to meet the needs of patients hospitalised with COVID-19.

NHS England and NHS Improvement (NHSE/I) will carry out analysis on a variety of pseudonymised datasets. This collection of datasets has been referred to as the “temporary National Repository” (tNR) and National Commissioning Data Repository (NCDR), but is now know as the NHS England & Improvement Data Platform.

In 2019 NHS England and NHS Improvement came together under one board as announced here https://www.england.nhs.uk/2018/03/nhs-england-and-nhs-improvement-together/

The requested datasets are required to ensure that NHS E/I can meet its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N,s23) and to meet the requirements of the Five Year Forward View. The objective for processing can be summarized as the provision of an ad-hoc and routine analysis and reporting service to support the work of NHS E/I in the following responsibility areas:

1. Proactive management of commissioned services – including contract management, performance management, needs and inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities

2. Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities

3. Data quality analysis and data quality management, to ensure data processing has been carried out effectively

4. Advanced analytics to support evaluation of service transformation.

In general, access to and linkage of the data into NCDR has permitted NHS E/I to carry out proactive management of commissioned services, which includes contract management, performance management, needs and inequalities analysis, benchmarking, service reviews as well as development, planning, budgets and allocations and general commissioning assurance activities. An example of this is where service reviews in terms of access have taken place and the findings showed that the uptake was low due to location of the service. With the analysis and intelligence gained from using the data, the service has been relocated to a more accessible place. Future access and analysis of the data will confirm the anticipated benefits that the service is reaching and is accessible by more people.

Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities, have also been supported by developing and using dashboards to support decision making at all levels within NHS E/I. The dashboards have been a valuable resource of information to demonstrate areas of innovation and improvement and share best practice.

Access to the data, has helped drive understanding of data quality analysis and data quality management. NHS E/I have been able to identify the gaps of coverage and quality in certain areas; for example, feeding back to NHS Digital of missing data items from the MHSDS data set. Working jointly to understand the issues have helped resolve some of these data concerns, from both commissioner and provider perspectives.

To better understand the relationship between physical and mental health, NHS E/I will link physical and mental health record level data. This is an area where the evidence is currently relatively weak. Linking this data will ensure commissioners can understand full patient pathways for their patients and plan their care, for example NHS E/I cannot currently answer questions such as whether patients with mental health issues are at a higher risk of particular outcomes (e.g. hospital admissions, re-admissions, increased lengths of stay).

It is anticipated that NHS E/I will develop this resource and request additional datasets from NHS Digital. Any additional datasets will only be included in this agreement subject to application to NHS Digital. The reasons for needing the datasets included in this agreement are as follows:

SUS (A&E, OP, APC, and ECDS):

SUS data is used extensively in local, regional and national performance management, in the development of national policies (e.g. A&E plan, demand and capacity modelling for elective care) and in resource and activity planning.

SUS will also contribute to:

1. Effective performance and contract management of the health and care system

2. Reducing the burden on Local Providers through eventual cessation of daily sitreps (situation report showing patient flow through A&E to help identify and make improvements to systems) which will be replaced by ECDS daily flows

Mental Health (MHMDS, MHLDDS, MHSDS) and Assuring Transformation (AT):

The 2016 Five Year Forward View for Mental Health report from the Mental Health Taskforce sets out the start of a ten-year journey for the transformation of mental health services. The Mental Health data is crucial in monitoring progress against the Five Year Forward View.

MHSDS data has also been expanded to include extensive information on people with learning disability and/or autism. The annual learning disability provider census, which ran from 2013-15 has been stood down, and all relevant content is now included within MHSDS. In addition, the content of the commissioner-based Assuring Transformation (AT) data collection has been included within MHSDS, with a goal to stand down AT when MHSDS data quality and completeness reach acceptable levels. Both the census and AT cover only inpatient care. There is currently no other data set which gives details of specialist community and outpatient services used by people with learning disability and/or autism. This is a high-profile policy area and it is important that NHS E/I can monitor the quality and completeness of Mental Health data, so that this data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. Access to patient-level data will also allow more detailed modelling and segmentations than is available through published data.

NHS E/I therefore needs to be able to monitor the quality and completeness of Mental Health data, so that the data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. As there is a requirement for further segmentation beyond the existing Data Quality reporting by NHS Digital, patient-level data is required. This is also true for other elements of Mental Health data (e.g. early intervention in psychosis) where NHS E/I have set-up aggregate data collections from providers until the quality of MHSDS can be improved. This increases burden and causes confusion.

Detailed patient-level data is also required to compare Assuring Transformation and MHSDS inpatient data. This is necessary to identify under- and over-reporting in MHSDS (compared to AT) and to identify where patient records are inconsistent across the two data sets. Assuring Transformation is currently being used to monitor inpatient trajectories as part of the three-year national transformation plan ‘Building the right support’. If the monitoring data set switches to MHSDS before the end of this three-year period, NHS E/I needs to have absolute confidence that the two data sets are comparable and compatible.

The need for increased access to Mental Health and IAPT data is widespread given the relative lack of evidence (as compared to measuring physical health), despite £34 billion being spent each year on mental health (source: MH FYFV). The data will allow NHS E/I to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the MH FYFV, such as waiting time standards for early intervention in psychosis. Data access will facilitate the development of new standards e.g. on eating disorders or out of area placements (where patient-level data will allow us to monitor the impact of various thresholds). To monitor progress against policy programmes NHS E/I need high quality data, and access to Mental Health and IAPT will allow NHS E/I to assist in driving up quality, and cease the aggregate data collections which are currently in place (so reducing burden on providers and administrative costs).

Improving Access to Psychological Therapies (IAPT) (including additional payment data, and wave 1+2 pilot sites):

The Improving Access to Psychological Therapies (IAPT) programme began in 2008 and has transformed treatment of adult anxiety disorders and depression in England. Over 900,000 people now access IAPT services each year, and the Five Year Forward View for Mental Health committed to expanding services further alongside improving quality. IAPT services provide evidence based treatments for people with anxiety and depression (implementing NICE guidelines).

In addition, there is a strong policy need to understand the linkage between physical and mental health. Physical and mental health are closely linked – people with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people – one of the greatest health inequalities in England. Two thirds of these deaths are from avoidable physical illnesses, including heart disease and cancer, many caused by smoking. In addition, people with long term physical illnesses suffer more complications if they also develop mental health problems.

To measure the impact of new integrated IAPT services and inform future rollout, NHS E/I has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS.

Additionally, IAPT payment data is requested to aid the testing and implementation of a currency model for IAPT services that is predicated upon the delivery of outcomes and quality metrics related to treatment that are currently captured within the IAPT dataset.

Other benefits include enabling the principle of the money following the patient, which is a key enabler of the policy of attaining parity between mental health and physical health. This can only be achieved by an appropriate balance of resources.

The Five Year Forward View for Mental Health and Implementing the Five Year Forward View for Mental Health include commitments to expand Improving Access to Psychological Therapies (IAPT) services to meet 25% of need by 2020/21. Most of the expansion will be in ‘Integrated IAPT’ services, co-located in and integrated with physical health services, and focused on people with anxiety/depression in the context of long-term physical health problems and/or people with distressing and persistent medically unexplained symptoms (MUS). The expansion is expected to deliver quality improvements across local health economies that would enable better planning of resources so they are utilised more effectively.

To support the development of integrated IAPT services, pilots are being supported as Integrated IAPT Early Implementers in 2016/17 and in 2017/18. Early Implementers will work collaboratively to design and implement high quality new services, and modify clinical pathways.

It is anticipated that with a more joined up approach there will be an improvement in access to services for patients who need treatment of co-morbid physical and mental health problems. The aim is to ensure that patients have the access they need as and when required with a more streamlined care pathway. Therapists will be co-located within long term conditions / medically unexplained symptoms (MUS) care pathways as part of multidisciplinary teams.

NHS E/I is supporting Early Implementer pilot sites to deliver new Integrated IAPT services. To understand how Integrated IAPT services can be implemented and their effects, NHS E/I have commissioned an analysis of the impact of ’Integrated IAPT’ services on health outcomes and healthcare utilisation. The aim of this work is to collect evidence to build a strong case for commissioners to support a further rollout of Integrated IAPT and to understand new ways of working.

Analysis of these dimensions will be vital in informing the future roll-out of integrated IAPT services, and the IAPT data included in this agreement is required to carry out this analysis.

To measure the impact of new integrated IAPT services and inform future rollout, NHS E/I has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS.

Local 111 Data:

44 lead CCGs already have a contract in place for 111 services and there are currently different models for how 111 services are commissioned and integrated within a locality. By collecting 111 data centrally at a national level, local best practice can be identified through benchmarking and provide the evidence to better understand the most effective model for integration of the various services associated with urgent and emergency care. In order to do this, NHS E/I requires CCGs to continue to collect data from their local services and provide specific metrics for Urgent & Emergency Care (UEC) so that this is also available in the national UEC Dashboard that North of England Commissioning Support Unit will collate for NHS E/I nationally. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements).

The national UEC Dashboard will enable both CCGs and NHS E/I to have a consistent way of reviewing UEC services, which will be captured in all CCG DSAs (in addition to this NHS E/I agreement). It will also provide a consistent method for pathway analysis, so that CCGs can compare and contrast their performance with other UEC models across the country. Linkage through to their own local reporting will further allow them to better understand their local pathways.

The proposed approach is the provision of a single national system, white-labelled and provided locally to CCGs. The RAIDR-111 dashboard is a tool specifically developed by North of England Commissioning Support Unit (NECS) to support the UEC system. RAIDR-111 will deliver a single yet comprehensive view of the Integrated Urgent Care system nationally, meeting the needs of many differing audiences – NHSE, STPs, A&E Delivery Boards, and CCGs. The dashboard needs to combine 111 call outcome data with the linked secondary care SUS pseudonymised record level data, showing A&E attendance and treatment received. The dashboard provides a single version of the truth accessible and drillable at national, regional, STP, and CCG level – all able to be aggregated up and down, at the fingertips of the users. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements).

NHS Digital will link the local 111 data with a number of fields from national SUS data in order to generate the dataset required to populate the urgent care dashboard. This linked 111/SUS data set have the consistent pseudonym applied and subsequent upload to the NCDR. This will enable the urgent care dashboard to be populated, which will allow NHS E/I to understand and benchmark urgent care patient flows and service provision.

Further linkage with other NCDR data sets is needed in order to fully understand the activities, pathways and outcomes of patients that enter the system via the 111 service. These data sets will include wider SUS data (APC, OP, A&E), IAPT and the mental health data sets (MHMDS, MHLDDS, MHSDS).

South Central & West CSU (SCW) have also been commissioned to undertake work on behalf of NHS E/I in relation to the 111 data. SCW will utilise the data to assess whether increasing the proportion of 111 calls handled by a clinician reduces the proportion of callers that subsequently attend A&E as well as understanding the impact on ambulance dispositions and GP dispositions.

The data will be used to understand the impact on the whole Integrated Emergency Care system of an increase in the resources in the Clinical Assessment Service (CAS) of 111. The data will be used to show any change in disposition of the patients within the 111 system and any impact that it has on the wider system of urgent care service providers.

In order for the evaluation to effectively establish the activity, disposition and impact changes SCW will require national data. This will enable changes in services as a result of wider factors (such as demographics, seasonality and national drivers such as the recommendations coming out of the Next Steps on the Five Year Forward View) to be taken into account.

Community (CYPHS, CSDS – Community Services Data Set (replacing CYPHS)):

NHS E/I requires access to community data to enable the comparison of outcomes from community healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities.

NHS E/I also requires community data to support allocations analysis in order to adhere to statutory duties around allocation of budgets for commissioning NHS services, and in doing so adhering to the principle of ensuring equal access for equal need. Although NHS E/I has statistical models to predict the need for different health services across the country to inform the allocations process, there is currently no model for community services due to a lack of robust data at the national level.

The CYPHS dataset will be undergoing the removal of the age restriction making it an all ages dataset (CSDS). There will also be additional development of this dataset resulting in a new specification.

Maternity Services Data Set (MSDS) including currency extract:

NHS E/I requires access to maternity data to enable the comparison of outcomes from maternity healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities. This data is required to ensure NHS E/I can satisfy its statutory responsibility to assure maternity services that are commissioned, changed or redesigned by CCGs and support the development of relevant health and care policies and financial allocations.

NHS E/I also requires national maternity data in order to refresh the allocation formula to inform the next allocations round. Access to maternity patient level data will support the work will enable NHS E/I to further develop currencies for maternity services.

Diagnostic Imaging Dataset (DID):

National DID data is required by NHS E/I to understand the quality of care and patient outcomes. NHS E/I commission all specialised services activity for two diagnostic tests - PET-CT and Cardiac MRI, and therefore requires access to the relevant data for effective commissioning of these.

Furthermore, the dataset provides a more complete picture of all imaging activity including those performed at mobile/independent sector diagnostic units and is therefore more complete than local commissioning flows that are currently received. It will be used alongside other data sources (such as SUS) to undertake specific commissioning activities, including creation of commissioning dashboards, analysis of imaging activity and improving the understanding of diagnostic services by diagnostic modality.

NHS E/I has been granted access to a subset of test DIDs data, which contains over 100 million records. Access to this data facilitated an understanding of the distribution of the time between a test being requested and actually carried out by type of test, provider, by some patient characteristics and over time. This is key to deepening the understanding of what characteristics are associated with the longest delays; particularly with respect to cancer diagnoses, the early detection of which is a key objective in the NHS Long Term Plan. Access to the full dataset on a regular basis will significantly improve understanding of the elective patient pathway from initial outpatient to final treatment. This access will also increase visibility of which parts of the care pathways need improvement where delays often occur (for example), and support improvement programmes which analyse diagnostic waiting times to identify demographic variability of service, inequality in treatment provision and variation in treatment outcomes in relation to length of time between referral and diagnosis.

The DID dataset is expected to be completed by all providers of NHS services, and as such covers independent sector providers for PET CT etc. which NHS E/I’s existing data flows might not cover. It also captures all imaging performed at mobile diagnostic units and therefore is likely to be more complete than current commissioning flows. Release of DID data will allow NHS E/I to investigate these underlying concerns around coverage and where the gaps are.

The DID data would be linked with patient level monitoring received as part of the commissioning process, as well as costing flows such as the local price information, in order to understand the cost of the service. The data would also be linked with SUS.

NHS E/I will be primarily focusing on cardiac MRI and PET CT as these services are commissioned centrally irrespective of whether the patient would traditionally be paid for by CCG or NHS E/I.

Access will also enable line by line reconciliation with patient level flows, following which NHS E/I could consider turning off the local data flow, in favour of DID, which would release significant burden on trusts.

Cancer Waiting times (CWT):

NHS E/I requires access to CWT data so it can be used to monitor times taken to diagnose and treat patients with cancer across the country, and ensuring that wait times are in line with the expectations and rights of patients in the NHS Constitution. The CWT data is also needed to enable the comparison of cancer waiting times from NHS Providers, to understand the scope and scale of variation across the national, regional and sub-regional areas.

The data will be used to:

• Monitor cancer waiting times targets at national and regional levels.

• Identify variances in waiting times across the country and focus on improving the services and reducing inequalities.

• Produce monthly and quarterly Official Statistics.

• Regional teams and the Commissioning Operations Directorate will use aggregate data for the purpose of performance management.

• investigate these underlying concerns around coverage and where the gaps are.

• Review and plan service improvements

Comparison of performance by tumour type aggregate reports will provide insight into how adjustments and general operation of the CWT dataset and guidance rules apply in the system, and whether policy decisions need to be made to amend the dataset and rules to reflect changing performance or volumes within CWT.

The overall aim of this type of additional analysis would be to support improvements to cancer patients survival and experience. The NHS Long Term Plan set out a number of ambitions to be met by 2028 including increasing the proportions of patients staged 1 or 2 from around half now to three-quarters. Achieving this means that from 2028, 55,000 more people each year will survive their cancer for at least five years after diagnosis. For these, improvements to ensure optimal diagnostic and treatment pathways and nationally agreed processes are key, and require NHS E/I policy teams to be able to analyse the Cancer Waiting Times dataset to identify improvements.

The CWT historical data will be required to provide baselines of previous cancer waiting times going back at least 6 years. This will allow retrospective analyses to confirm that interventions put in place to reduce the cancer waiting times, have brought the length of time patients have to wait for a confirmed diagnosis down. Access to data will also identify the quality of the data provided and where focus can be prioritised to support the local healthcare systems.

The NHS E/I requirement for the CWT data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Civil Registration of Deaths and Diagnostic Imaging data. This will be used to understand how local systems are working effectively, such that cancer is diagnosed and treated quicker and cancer survival rates are increasing at a National, Regional and sub-regional level.

Civil Registration of Deaths (CR Deaths):

Mortality is one of the measures of patient outcomes, particularly when that death is at a young age or from a cause that may have been prevented by a healthcare intervention.

There is a Secretary of State ambition to reduce the rate of stillbirths and neonatal deaths by 50% by 2025, for which the maternity transformation programme has been set up to achieve this ambition. To support this ambition there is a requirement to understand the factors that contribute to still births and neonatal deaths.

By having access to the Civil Registration of Deaths data, NHS E/I will be able to understand the drivers and patterns of mortality as well as premature mortality. This would help inform of the NHS treatments that those patients have received.

As part of the Long Term Plan, access to this data would also permit analyses that would not be possible from the ONS publications, for example to identify the still birth rate for women from a BAME background who live in the most deprived areas. This would highlight where service provision is not adequate and allow focus and interventions to be put in place with a view to reduce the levels of still births.

From access to this data NHS E/I, would be able to understand reasons why patients are dying at a National, Regional and sub-regional level and identify what additional support services could be put in place to prevent many of these deaths. Part of the analyses would also show where patient are dying e.g. are patients dying at hospitals due to hospices closing due to Local authorities withdrawing support, or is there a problem at a particular trust.

NHS E/I requires the data to feed into the Clinical Pathway dashboard which contain measures:

• Mortality rate from serious emergency conditions (7 days)

• Mortality rate from serious emergency conditions (30 days)

• Case fatality rate from serious emergency conditions

These measures help validate programs implemented to improve patient pathway e.g. High users unable to validate if the process to help patients find the best support are working, or did the patient die.

The dashboard provides guidance to make Urgent Emergency Care (UEC) systems aware of issues relating to patient outcomes and clinical effectiveness. This will inform long term strategic planning and monitor change to improve the quality of UEC.

The NHS E/I requirement for the CR Deaths data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Maternity. This will be used to understand how local systems are working effectively, such that Services and interventions put in place to prevent people from dying early are effective and living longer at a National, Regional and sub-regional level.

Patient Reported Outcome Measures (PROMs)

NHS E/I requires access to Patient Reported Outcome Measures data to enable the comparison of outcomes from healthcare services. This data assesses the quality of care delivered to NHS patients from the patient perspective.

The data will be used to understand variation and drivers in outcomes as reported by patients, and to explore how they differ in relation to patients undergoing the same set of procedures (hip replacements, knee replacements, groin hernia, varicose veins) within NHS providers. The data will also permit viewing patient outcomes at a National, Regional and sub-regional levels. It will provide NHS E/I details of the quality of care provided country wide, and focus on where progress can be made to ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities.

NHS E/I will require at least the last 6 years of data to start building the retrospective views of the data, and baseline how patients outcomes have changed historically.

PROMs data will also be used alongside a number of fields from the National SUS data in order to develop a dataset that will be used to generate a further analyses and insight that ensures NHS E/I can satisfy its statutory duties part of which includes a responsibility to consider the economic, social and environmental benefits to be achieved through commissioning.

National Diabetes Audit data (NDA):

NHS E/I requires access to the full range of National Diabetes Audit data to;

• assess local practice against National Institute for Health and Care Excellence (NICE guidelines)

• compare care and care outcomes with similar services and organisations

• identify gaps or shortfalls that are priorities for improvement

• identify and share best practice

• provide comprehensive national pictures of diabetes care and outcomes in England

NHS E/I has a statutory duty (under the Health and Social Care Act (2012)) to conduct an annual assessment of every CCG in England. The NDA data will be used to produce the Clinical Commissioning Group Improvement and Assessment Framework (CCGIAF) ratings for indicator 103b. Indicator 103b evaluates newly diagnosed people with diabetes (diagnosed less than a year) attend a structured education course. NHS E/I monitors the Clinical Commissioning Groups to ensure that the number of diabetes patients attending structured education are increasing.

Poor management can be associated with higher risk of the microvascular complications of diabetes (eye disease and blindness; kidney disease and kidney failure; foot disease, foot ulceration and amputation) and higher risk of cardiovascular disease (heart attack, angina, heart failure, stroke, and amputation). As such, NICE recommends that newly diagnosed diabetes patients attend a structured education course within 12-months of diagnosis in order to improve understanding, empowerment and self-management of diabetes. NHS England recognises that socio-economic factors will have a key impact upon the success of this.

Whilst diabetes care delivery and treatment targets are recommended in order to both monitor for the onset of diabetes complications and to minimise the risk of onset of diabetes complications, structured education is recommended to support self-management in order to achieve the same goals, as well as to achieve better understanding of the disease and better quality of life with diabetes.

The National Diabetes Audit data will also be required to monitor progress on the Transformation Funding provided to the Diabetes programme.

The Diabetes Transformation Funding was allocated to CCGs who had successfully bid for funding during 2017/18 to fund four separate workstreams for an initial two-year period as follows:

• Increase the treatment target attainment among CCGs and reduce the variation between CCGs to improve outcomes for patients with diabetes and reduce complications

• Increase attendance at structured education and thus improve self-management and treatment target attainment

• Establish or expand Multi-disciplinary footcare teams to provide a dedicated service improving outcomes, reduce the length of stay and the number of amputations

• Implement or increase the Diabetes inpatient specialist nurse provision to provide support and education to inpatients with diabetes to reduce the complications and provide training

NHS E/I will require this data to be fed into a reporting dashboard for the Diabetes Transformation Programme Board, that is to be updated on a regular basis with data from NDA, National SUS, National Diabetes Inpatient Audit data (NaDIA).

NHS E/I will require at least the last 10 years of data to start building the retrospective views of the data, and baseline how delivery of diabetes care has changed historically.

Clinical Registry Data:

NHS E/I requires access to data collected within Clinical Registries, Databases and Audits. Part of NHS E/I’s responsibility oversees the budget, planning, delivery and day-to-day operation of the commissioning side of the NHS in England as set out in the Health and Social Care Act 2012.

Every year NHS E/I recommissions, commissions or procures health services from health service providers. It is a complex process, involving the assessment and understanding of a population’s health needs, the planning of services to meet those needs and securing services on a limited budget, then monito

Any outputs to 3rd parties not included as Data Controller/Processor in this application/agreement must be aggregated (with small number suppression applied in line with NHS Digital requirements).

All datasets will be used to:

1. Allow NHS E/I to meet its ongoing statutory duties under the NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23. Specifically – ‘to exercise its functions ensuring that health services are provided in an integrated way where this would improve quality and outcome of services and reduce inequalities’.

2. Realise data quality improvements initiatives including reports to ensure that NHS E/I data processing has been carried out correctly (e.g. expected volume of specialised activity service line codes derived).

3. Provide an aggregate activity and finance report which will be used to populate an NHS E/I integrated activity and finance report for the monthly NHS E/I Executive Group Meeting. This has now been introduced (the benefits from this, and related SUS analyses included in the following section).

4. Analyse the impact of changes to NHS commissioning business rules (e.g. tariff changes, commissioner assignment, specialised services identification rules, HRG grouping).

5. Facilitate proactive management of NHS E/I directly commissioned services using pseudonymised or aggregate data (with small number suppression) only. (This is dependent on the analysis requirement as to whether the output used is pseudonymised or aggregate data.)

6. Enhance statistical analysis to facilitate proactive management of transformation programmes by local health systems on behalf of NHS E/I.

7. Monitor and analyse outpatient and community services; alternatives to inpatient care.

8. Monitor and analyse of new patient care pathways introduced to support the transformation of services for people with learning disability and/or autism. Access to data will specifically allow:

- Analysis of inpatient services and activity for people with learning disability and/or autism

- Analysis of outpatient and community services and activity for people with learning disability and/or autism

- Analysis of patient pathways as patients move between services

9. Analyse factors that result in high service usage.

10. Analyse the usefulness of diagnosis coding. Analysis will firstly focus on an understanding of the completeness and quality of coding in the dataset to provide a basis for any further analysis. NHS E/I would like to understand the completeness and validity of this data item, as well as identifying any geographical trends or particular providers which show problems with coding completeness. Access to the data would enable further discussion of coding practices in providers for casemix complexity. The intelligence can be shared through commissioning routes to help drive up coding completeness and accuracy to make any subsequent analysis more meaningful.

11. Analyse the spread of diagnoses geographically and demographically, to identify any trends as well as diagnoses recorded over time (given a robust starting point for coding accuracy and completeness). Admissions and readmissions and activity could also be analysed by diagnosis to better understand these trends and potential differences in provider models to inform commissioning decisions and service improvement.

12. Provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint. An analysis of restraint to identify any trends or outliers across providers, CCGs and sub-regions. The analysis will also include the frequency of restraint per patient and by ward type. This will highlight any areas for concern in the use of restraint to inform further discussions with commissioners. As the restraint type is added to the MHSDS in v2.0 this will provide further insight and areas for focus in discussions with commissioners. The aim of this is to provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint.

13. Achieve the service improvements required, in association with the findings from the report “The commissioning of specialised services in the NHS” by the National Audit Office (NAO), whereby the findings suggested that NHS E/I does not have sufficient information to drive service improvement in specialised commissioning.

14. Undertake health economic modelling using:

a. Analysis on provider performance against targets.

b. Learning from and predicting likely patient pathways for certain conditions, in order to influence early interventions and other treatments for patients.

c. Analysis of outcome measures for differential treatments, accounting for the full patient pathway.

15. Provide commissioning cycle support for grouping and re-costing previous activity.

16. Undertake commissioner reporting, including:

a. Summary by provider view - plan & actuals year to date (YTD).

b. Summary by Patient Outcome Data (POD) view - plan & actuals YTD.

c. Summary by provider view - activity & finance variance by POD.

d. Planned care by provider view - activity & finance plan & actuals YTD.

e. Planned care by POD view - activity plan & actuals YTD.

f. Provider reporting.

g. Statutory returns.

h. Statutory returns - monthly activity return.

i. Statutory returns - quarterly activity return.

j. Delayed discharges.

k. Quality & performance referral to treatment reporting.

17. Produce aggregate reports for CCG Business Intelligence.

18. Produce project / programme level dashboards.

19. Monitor acute / community / mental health quality matrix.

20. Facilitate clinical coding reviews / audits.

21. Undertake budget reporting with drill down capability to various levels.

22. Dashboards that are produced can cover all levels of the NHS – National, Regional and Sub-regional. The aim is to highlight trends of areas where in some cases NHSE are able to the levels of frequency of attendees accessing services.

23. NHS E/I is creating a population health management dashboard which will give each combined local health economy an aggregated (with small numbers suppressed) view of national data, facilitating benchmarking. This will inform NHS E/I about the relative performance of these emerging combined health and social care resources, facilitating information exchange and assurance that the new model of operation is being effective and meeting its objectives.

24. Any outputs produced from processing IAPT data must comply with the IAPT Disclosure Controls i.e.: o In order to prevent suppressed numbers from being calculated through differencing other published numbers from totals, all sub-national counts have been rounded to the nearest 5. o Sub-national rates (percentages) are rounded to the nearest whole percent to prevent disclosure. National rates are rounded to one decimal place.

Clinical Registry Data:

1. Routine reports and dashboards (where small numbers appear, these will be suppressed in line with NHS Digital guidance) so that all levels of NHS E/I (national, regional and sub regional) can access the views, analyses and insight. The intelligence gathered will be made available to drive improvement, efficiency as well as recognising ‘model hospital behaviours’ in specialist fields.

2. Produce analysis of variation and trends at National, Regional and Sub regional levels, not just from a provider view, but from a commissioning prospective as well.

3. Produce analysis of variation and drivers in outcomes as reported by each disease specific Registry, and to explore how they differ in relation to patients undergoing the same set of procedures and treatments in NHS providers.

4. Inform decisions of what can be done to reduce the variation and improve the care given to patients.

The specific Clinical Registry datasets included in this Data Sharing Agreement at the time of approval are:

- TARN, Trauma Audit and Research Network

- UK Renal Registry

- UK ROC, UK Rehabilitation Outcomes Collaborative

- NHFD, National Hip Fracture Database

- PICANet, Paediatric Intensive Care Audit Network

- BSR, British Spine Registry

Other clinical registry datasets may be added to this list, subject to approval from NHS Digital, including review and recommendation by the IGARD (independent expert group advising NHS Digital on the release of data).

e-Referral Service (eRS)

1. Manage demand, by understanding the quantity of assessments required NHS E/I are able to improve the care service for patients by predicting the impact on certain care pathways and ensure the secondary care system has enough capacity to manage the demand.

2. With the use of e-RS data NHS E/I will be able to identify inequalities and improvements of referrals (when comparing either trusts or CCGs) and therefore direct service redesign or invest to drive improvement.. NHS E/I are unable to see the contents of the referral letters.

3. NHS E/I may identify low priority procedures which could be directed to community-based alternatives and as such commission these services and deflect referrals for low priority procedures resulting in a reduction in hospital referrals.

4. Using pseudonymised e-RS data to provide intelligence will support the understanding of the quantity of assessments required and demand management; NHS E/I will be able to improve the care service for patients by predicting the impact on certain care pathways and support the secondary care system in ensuring enough capacity to manage the demand.

Births Data

1. Manage demand - by understanding the quantity of births taking place, NHS E/I are able to improve the care service for all types of settings for Births and ensure adequate funding is available.

2. In improving the quality of reporting, understanding the levels and types of Neonatal deaths and injuries that are occurring in NHS hospitals.

3. NHS E/I may identify causes or trends in care of Neonates of practices contributing to deaths and injuries.

4. Using pseudonymised and linked data report back on Indictor measures set out in the Long Term Plan to track outcomes of all births, and directing planning and delivering additional resources where identified.

Summary Hospital-level Mortality Indicator (SHMI)

NHS E/I plan to produce comparison benchmarks for hospital mortality indicators across different trusts.

SHMI data will inform various strategies, reports and evaluations for trusts.

SHMI data will support investigations in particular trust's mortality outcomes.

NHS 111 Online Dataset

A range of reports, and analysis processed in an ad-hoc manner to improve the understanding of scope and variation in patient pathways across the national, regional and sub-regional areas.

Medicines Dispensed in Primary Care

Primary Care Strategy Evaluation Reports; enabling better understanding of primary care medication across the healthcare system. Which in turn will support commissioning decision making within the NHS.

Medicines Value Programme;

There are over 300 indictors which the Right Care team also monitors. As an example this data will support the production of a Urinary Tract Infection (UTI) Focus pack, with dashboard reporting in progress.

The medicines value programme aims to improve health outcomes from medicines and ensure that NHS E/I and NHS Improvement are getting the best value from the NHS medicines bill. With aims to; enable people to access treatment that is clinically effective, based on the latest scientific discovery, as well as cost-effective.

Outcomes Based Healthcare (OBH)

Reports specific to commissioning queries and projects devised by NHSE/I.

Analysis specific to commissioning queries and projects devised by NHSE/I.

Ambulance Data Set (Pilot)

The NHS Long-Term Plan 2019 sets out a commitment to develop an ambulance data set to: “…bring together data from all ambulance services nationally in order to follow and understand patient journeys from the ambulance service into other urgent and emergency healthcare settings”. The Ambulance Data Set project seeks to deliver that long-term plan commitment. The project is owned by NHS England and NHS Improvement, operating with the authority of the Urgent and Emergency Care Transformation programme under the title of the ‘Joint Ambulance Improvement Programme’

Additionally, in response to the significant demand for Ambulance Services and data to support pandemic research and planning, NHS England and NHS Improvement have statutory responsibilities to continue to improve quality of health care services at all times, and requires data to do this.

NHS England would not have been able to meet some of its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23) and to meet the requirements of the Five Year Forward View, without access to SUS data.

Yielded benefits have been partially met with the SUS data. Access has enabled NHS England to check the quality and efficiency of the health services that are commissioned and to plan for the future needs of patients.

Reports and dashboards have been created to demonstrate management of commissioned services, including contract management, performance management, inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities.

Access to Mental health and IAPT data has allowed NHS England to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the Mental Health Five Year Forward View, such as waiting time standards for early intervention in psychosis.

NHS England through accessing the data provided, have been able to develop insight and understanding of the services commissioned and ultimately view how this organisation can better support and improve the care and quality patients receive, as well as the ambition set out to help people live longer. There is a continuing requirement for NHS England to have access the data so that all objectives, purposes, outputs and benefits can continue to be realised.

Receiving the data extracts has enabled NHSE Specialised Commissioning to carry out it’s statutory duties such as meeting it’s contractual obligations in monitoring the activity being carried out in a specialised service, (e.g. Major Trauma and Renal Services), supporting the accurate calculation of the cost of services and payments to providers and supporting the improvement in data completeness and data quality related to a specialised service (e.g. receiving data on Complex Spinal Service from the British Spine Registry).

Examples of specific benefits of clinical data flows into the NCDR via the DARS:

Data received from the UK Renal Registry is also fundamental for developing intelligence to support the Service Review of Renal Services by Specialised Commissioning Service Transformation Team which began recently.

Data received from PICANet is supporting the implementation of the recommendations of the Service Review of Paediatric Critical Care and Surgery in Children (report published 2019).

Data received from UK ROC provides the basis of the currency for payment of Specialised Rehabilitation Services and without the data flow Specialised Commissioners would not be able to monitor the level of activity at each of the Specialised Rehabilitation Centres or calculate the appropriate payments for the activity the centres have carried out.

Additional benefits particular to COVID-19, January 2020 onwards:

Access to the clinical database data has also been vital this year to be able to monitor the change in planned or expected activity and variation in this as a result of the need to respond to COVID-19 – for example Renal Services – where there has been a massive upsurge in the need for dialysis directly related to meeting the need of patients with COVID-19, or the significant decrease in activity related to elective procedures for Complex Spinal Surgery, as theatres and staff have been re-deployed to meet the needs of patients hospitalised with COVID-19.

NHS England and NHS Improvement (NHSE/I) will carry out analysis on a variety of pseudonymised datasets. This collection of datasets has been referred to as the “temporary National Repository” (tNR), and is now known as the National Commissioning Data Repository (NCDR).

In 2019 NHS England and NHS Improvement came together under one board as announced here https://www.england.nhs.uk/2018/03/nhs-england-and-nhs-improvement-together/

The requested datasets are required to ensure that NHS E/I can meet its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N,s23) and to meet the requirements of the Five Year Forward View. The objective for processing can be summarized as the provision of an ad-hoc and routine analysis and reporting service to support the work of NHS E/I in the following responsibility areas:

1. Proactive management of commissioned services – including contract management, performance management, needs and inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities

2. Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities

3. Data quality analysis and data quality management, to ensure data processing has been carried out effectively

4. Advanced analytics to support evaluation of service transformation.

In general, access to and linkage of the data into NCDR has permitted NHS E/I to carry out proactive management of commissioned services, which includes contract management, performance management, needs and inequalities analysis, benchmarking, service reviews as well as development, planning, budgets and allocations and general commissioning assurance activities. An example of this is where service reviews in terms of access have taken place and the findings showed that the uptake was low due to location of the service. With the analysis and intelligence gained from using the data, the service has been relocated to a more accessible place. Future access and analysis of the data will confirm the anticipated benefits that the service is reaching and is accessible by more people.

Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities, have also been supported by developing and using dashboards to support decision making at all levels within NHS E/I. The dashboards have been a valuable resource of information to demonstrate areas of innovation and improvement and share best practice.

Access to the data, has helped drive understanding of data quality analysis and data quality management. NHS E/I have been able to identify the gaps of coverage and quality in certain areas; for example, feeding back to NHS Digital of missing data items from the MHSDS data set. Working jointly to understand the issues have helped resolve some of these data concerns, from both commissioner and provider perspectives.

To better understand the relationship between physical and mental health, NHS E/I will link physical and mental health record level data. This is an area where the evidence is currently relatively weak. Linking this data will ensure commissioners can understand full patient pathways for their patients and plan their care, for example NHS E/I cannot currently answer questions such as whether patients with mental health issues are at a higher risk of particular outcomes (e.g. hospital admissions, re-admissions, increased lengths of stay).

It is anticipated that NHS E/I will develop this resource and request additional datasets from NHS Digital. Any additional datasets will only be included in this agreement subject to application to NHS Digital. The reasons for needing the datasets included in this agreement are as follows:

SUS (A&E, OP, APC, and ECDS):

SUS data is used extensively in local, regional and national performance management, in the development of national policies (e.g. A&E plan, demand and capacity modelling for elective care) and in resource and activity planning.

SUS will also contribute to:

1. Effective performance and contract management of the health and care system

2. Reducing the burden on Local Providers through eventual cessation of daily sitreps (situation report showing patient flow through A&E to help identify and make improvements to systems) which will be replaced by ECDS daily flows

Mental Health (MHMDS, MHLDDS, MHSDS) and Assuring Transformation (AT):

The 2016 Five Year Forward View for Mental Health report from the Mental Health Taskforce sets out the start of a ten-year journey for the transformation of mental health services. The Mental Health data is crucial in monitoring progress against the Five Year Forward View.

MHSDS data has also been expanded to include extensive information on people with learning disability and/or autism. The annual learning disability provider census, which ran from 2013-15 has been stood down, and all relevant content is now included within MHSDS. In addition, the content of the commissioner-based Assuring Transformation (AT) data collection has been included within MHSDS, with a goal to stand down AT when MHSDS data quality and completeness reach acceptable levels. Both the census and AT cover only inpatient care. There is currently no other data set which gives details of specialist community and outpatient services used by people with learning disability and/or autism. This is a high-profile policy area and it is important that NHS E/I can monitor the quality and completeness of Mental Health data, so that this data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. Access to patient-level data will also allow more detailed modelling and segmentations than is available through published data.

NHS E/I therefore needs to be able to monitor the quality and completeness of Mental Health data, so that the data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. As there is a requirement for further segmentation beyond the existing Data Quality reporting by NHS Digital, patient-level data is required. This is also true for other elements of Mental Health data (e.g. early intervention in psychosis) where NHS E/I have set-up aggregate data collections from providers until the quality of MHSDS can be improved. This increases burden and causes confusion.

Detailed patient-level data is also required to compare Assuring Transformation and MHSDS inpatient data. This is necessary to identify under- and over-reporting in MHSDS (compared to AT) and to identify where patient records are inconsistent across the two data sets. Assuring Transformation is currently being used to monitor inpatient trajectories as part of the three-year national transformation plan ‘Building the right support’. If the monitoring data set switches to MHSDS before the end of this three-year period, NHS E/I needs to have absolute confidence that the two data sets are comparable and compatible.

The need for increased access to Mental Health and IAPT data is widespread given the relative lack of evidence (as compared to measuring physical health), despite £34 billion being spent each year on mental health (source: MH FYFV). The data will allow NHS E/I to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the MH FYFV, such as waiting time standards for early intervention in psychosis. Data access will facilitate the development of new standards e.g. on eating disorders or out of area placements (where patient-level data will allow us to monitor the impact of various thresholds). To monitor progress against policy programmes NHS E/I need high quality data, and access to Mental Health and IAPT will allow NHS E/I to assist in driving up quality, and cease the aggregate data collections which are currently in place (so reducing burden on providers and administrative costs).

Improving Access to Psychological Therapies (IAPT) (including additional payment data, and wave 1+2 pilot sites):

The Improving Access to Psychological Therapies (IAPT) programme began in 2008 and has transformed treatment of adult anxiety disorders and depression in England. Over 900,000 people now access IAPT services each year, and the Five Year Forward View for Mental Health committed to expanding services further alongside improving quality. IAPT services provide evidence based treatments for people with anxiety and depression (implementing NICE guidelines).

In addition, there is a strong policy need to understand the linkage between physical and mental health. Physical and mental health are closely linked – people with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people – one of the greatest health inequalities in England. Two thirds of these deaths are from avoidable physical illnesses, including heart disease and cancer, many caused by smoking. In addition, people with long term physical illnesses suffer more complications if they also develop mental health problems.

To measure the impact of new integrated IAPT services and inform future rollout, NHS E/I has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS.

Additionally, IAPT payment data is requested to aid the testing and implementation of a currency model for IAPT services that is predicated upon the delivery of outcomes and quality metrics related to treatment that are currently captured within the IAPT dataset.

Other benefits include enabling the principle of the money following the patient, which is a key enabler of the policy of attaining parity between mental health and physical health. This can only be achieved by an appropriate balance of resources.

The Five Year Forward View for Mental Health and Implementing the Five Year Forward View for Mental Health include commitments to expand Improving Access to Psychological Therapies (IAPT) services to meet 25% of need by 2020/21. Most of the expansion will be in ‘Integrated IAPT’ services, co-located in and integrated with physical health services, and focused on people with anxiety/depression in the context of long-term physical health problems and/or people with distressing and persistent medically unexplained symptoms (MUS). The expansion is expected to deliver quality improvements across local health economies that would enable better planning of resources so they are utilised more effectively.

To support the development of integrated IAPT services, pilots are being supported as Integrated IAPT Early Implementers in 2016/17 and in 2017/18. Early Implementers will work collaboratively to design and implement high quality new services, and modify clinical pathways.

It is anticipated that with a more joined up approach there will be an improvement in access to services for patients who need treatment of co-morbid physical and mental health problems. The aim is to ensure that patients have the access they need as and when required with a more streamlined care pathway. Therapists will be co-located within long term conditions / medically unexplained symptoms (MUS) care pathways as part of multidisciplinary teams.

NHS E/I is supporting Early Implementer pilot sites to deliver new Integrated IAPT services. To understand how Integrated IAPT services can be implemented and their effects, NHS E/I have commissioned an analysis of the impact of ’Integrated IAPT’ services on health outcomes and healthcare utilisation. The aim of this work is to collect evidence to build a strong case for commissioners to support a further rollout of Integrated IAPT and to understand new ways of working.

Analysis of these dimensions will be vital in informing the future roll-out of integrated IAPT services, and the IAPT data included in this agreement is required to carry out this analysis.

To measure the impact of new integrated IAPT services and inform future rollout, NHS E/I has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS.

Local 111 Data:

44 lead CCGs already have a contract in place for 111 services and there are currently different models for how 111 services are commissioned and integrated within a locality. By collecting 111 data centrally at a national level, local best practice can be identified through benchmarking and provide the evidence to better understand the most effective model for integration of the various services associated with urgent and emergency care. In order to do this, NHS E/I requires CCGs to continue to collect data from their local services and provide specific metrics for Urgent & Emergency Care (UEC) so that this is also available in the national UEC Dashboard that North of England Commissioning Support Unit will collate for NHS E/I nationally. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements).

The national UEC Dashboard will enable both CCGs and NHS E/I to have a consistent way of reviewing UEC services, which will be captured in all CCG DSAs (in addition to this NHS E/I agreement). It will also provide a consistent method for pathway analysis, so that CCGs can compare and contrast their performance with other UEC models across the country. Linkage through to their own local reporting will further allow them to better understand their local pathways.

The proposed approach is the provision of a single national system, white-labelled and provided locally to CCGs. The RAIDR-111 dashboard is a tool specifically developed by NECS to support the UEC system. RAIDR-111 will deliver a single yet comprehensive view of the Integrated Urgent Care system nationally, meeting the needs of many differing audiences – NHSE, STPs, A&E Delivery Boards, and CCGs. The dashboard needs to combine 111 call outcome data with the linked secondary care SUS pseudonymised record level data, showing A&E attendance and treatment received. The dashboard provides a single version of the truth accessible and drillable at national, regional, STP, and CCG level – all able to be aggregated up and down, at the fingertips of the users. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements).

NHS Digital will link the local 111 data with a number of fields from national SUS data in order to generate the dataset required to populate the urgent care dashboard. This linked 111/SUS data set have the consistent pseudonym applied and subsequent upload to the NCDR. This will enable the urgent care dashboard to be populated, which will allow NHS E/I to understand and benchmark urgent care patient flows and service provision.

Further linkage with other NCDR data sets is needed in order to fully understand the activities, pathways and outcomes of patients that enter the system via the 111 service. These data sets will include wider SUS data (APC, OP, A&E), IAPT and the mental health data sets (MHMDS, MHLDDS, MHSDS).

South Central & West CSU (SCW) have also been commissioned to undertake work on behalf of NHS E/I in relation to the 111 data. SCW will utilise the data to assess whether increasing the proportion of 111 calls handled by a clinician reduces the proportion of callers that subsequently attend A&E as well as understanding the impact on ambulance dispositions and GP dispositions.

The data will be used to understand the impact on the whole Integrated Emergency Care system of an increase in the resources in the Clinical Assessment Service (CAS) of 111. The data will be used to show any change in disposition of the patients within the 111 system and any impact that it has on the wider system of urgent care service providers.

In order for the evaluation to effectively establish the activity, disposition and impact changes SCW will require national data. This will enable changes in services as a result of wider factors (such as demographics, seasonality and national drivers such as the recommendations coming out of the Next Steps on the Five Year Forward View) to be taken into account.

Community (CYPHS, CSDS – Community Services Data Set (replacing CYPHS)):

NHS E/I requires access to community data to enable the comparison of outcomes from community healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities.

NHS E/I also requires community data to support allocations analysis in order to adhere to statutory duties around allocation of budgets for commissioning NHS services, and in doing so adhering to the principle of ensuring equal access for equal need. Although NHS E/I has statistical models to predict the need for different health services across the country to inform the allocations process, there is currently no model for community services due to a lack of robust data at the national level.

The CYPHS dataset will be undergoing the removal of the age restriction making it an all ages dataset (CSDS). There will also be additional development of this dataset resulting in a new specification.

Maternity Services Data Set (MSDS) including currency extract:

NHS E/I requires access to maternity data to enable the comparison of outcomes from maternity healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities. This data is required to ensure NHS E/I can satisfy its statutory responsibility to assure maternity services that are commissioned, changed or redesigned by CCGs and support the development of relevant health and care policies and financial allocations.

NHS E/I also requires national maternity data in order to refresh the allocation formula to inform the next allocations round. Access to maternity patient level data will support the work will enable NHS E/I to further develop currencies for maternity services.

Diagnostic Imaging Dataset (DID):

National DID data is required by NHS E/I to understand the quality of care and patient outcomes. NHS E/I commission all specialised services activity for two diagnostic tests - PET-CT and Cardiac MRI, and therefore requires access to the relevant data for effective commissioning of these.

Furthermore, the dataset provides a more complete picture of all imaging activity including those performed at mobile/independent sector diagnostic units and is therefore more complete than local commissioning flows that are currently received. It will be used alongside other data sources (such as SUS) to undertake specific commissioning activities, including creation of commissioning dashboards, analysis of imaging activity and improving the understanding of diagnostic services by diagnostic modality.

NHS E/I has been granted access to a subset of test DIDs data, which contains over 100 million records. Access to this data facilitated an understanding of the distribution of the time between a test being requested and actually carried out by type of test, provider, by some patient characteristics and over time. This is key to deepening the understanding of what characteristics are associated with the longest delays; particularly with respect to cancer diagnoses, the early detection of which is a key objective in the NHS Long Term Plan. Access to the full dataset on a regular basis will significantly improve understanding of the elective patient pathway from initial outpatient to final treatment. This access will also increase visibility of which parts of the care pathways need improvement where delays often occur (for example), and support improvement programmes which analyse diagnostic waiting times to identify demographic variability of service, inequality in treatment provision and variation in treatment outcomes in relation to length of time between referral and diagnosis.

The DID dataset is expected to be completed by all providers of NHS services, and as such covers independent sector providers for PET CT etc. which NHS E/I’s existing data flows might not cover. It also captures all imaging performed at mobile diagnostic units and therefore is likely to be more complete than current commissioning flows. Release of DID data will allow NHS E/I to investigate these underlying concerns around coverage and where the gaps are.

The DID data would be linked with patient level monitoring received as part of the commissioning process, as well as costing flows such as the local price information, in order to understand the cost of the service. The data would also be linked with SUS.

NHS E/I will be primarily focusing on cardiac MRI and PET CT as these services are commissioned centrally irrespective of whether the patient would traditionally be paid for by CCG or NHS E/I.

Access will also enable line by line reconciliation with patient level flows, following which NHS E/I could consider turning off the local data flow, in favour of DID, which would release significant burden on trusts.

Cancer Waiting times (CWT):

NHS E/I requires access to CWT data so it can be used to monitor times taken to diagnose and treat patients with cancer across the country, and ensuring that wait times are in line with the expectations and rights of patients in the NHS Constitution. The CWT data is also needed to enable the comparison of cancer waiting times from NHS Providers, to understand the scope and scale of variation across the national, regional and sub-regional areas.

The data will be used to:

• Monitor cancer waiting times targets at national and regional levels.

• Identify variances in waiting times across the country and focus on improving the services and reducing inequalities.

• Produce monthly and quarterly Official Statistics.

• Regional teams and the Commissioning Operations Directorate will use aggregate data for the purpose of performance

• management.

• investigate these underlying concerns around coverage and where the gaps are.

• Review and plan service improvements

Comparison of performance by tumour type aggregate reports will provide insight into how adjustments and general operation of the CWT dataset and guidance rules apply in the system, and whether policy decisions need to be made to amend the dataset and rules to reflect changing performance or volumes within CWT.

The overall aim of this type of additional analysis would be to support improvements to cancer patients survival and experience. The NHS Long Term Plan set out a number of ambitions to be met by 2028 including increasing the proportions of patients staged 1 or 2 from around half now to three-quarters. Achieving this means that from 2028, 55,000 more people each year will survive their cancer for at least five year after diagnosis. For these, improvements to ensure optimal diagnostic and treatment pathways and nationally agreed processes are key, and require NHS E/I policy teams to be able to analyse the Cancer Waiting Times dataset to identify improvements.

The CWT historical data will required to provide baselines of previous cancer waiting times going back at least 6 years. This will allow retrospective analyses to confirm that interventions put in place to reduce the cancer waiting times, have brought the length of time patients have to wait for a confirmed diagnosis down. Access to data will also identify the quality of the data provided and where focus can be prioritised to support the local healthcare systems.

The NHS E/I requirement for the CWT data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Civil Registration of Deaths and Diagnostic Imaging data. This will be used to understand how local systems are working effectively, such that cancer is diagnosed and treated quicker and cancer survival rates are increasing at a National, Regional and sub-regional level.

Civil Registration of Deaths (CR Deaths):

Mortality is one of the measures of patient outcomes, particularly when that death is at a young age or from a cause that may have been prevented by a healthcare intervention.

There is a Secretary of State ambition to reduce the rate of stillbirths and neonatal deaths by 50% by 2025, for which the maternity transformation programme has been set up to achieve this ambition. To support this ambition there is a requirement to understand the factors that contribute to still births and neonatal deaths.

By having access to the Civil Registration of Deaths data, NHS E/I will be able to understand the drivers and patterns of mortality as well as premature mortality. This would help inform of the NHS treatments that those patients have received.

As part of the Long Term Plan, access to this data would also permit analyses that would not be possible from the ONS publications, for example to identify the still birth rate for women from a BAME background who live in the most deprived areas. This would highlight where service provision is not adequate and allow focus and interventions to be put in place with a view to reduce the levels of still births.

From access to this data NHS E/I, would be able to understand reasons why patients are dying at a National, Regional and sub-regional level and identify what additional support services could be put in place to prevent many of these deaths. Part of the analyses would also show where patient are dying e.g. are patients dying at hospitals due to hospices closing due to Local authorities withdrawing support, or is there a problem at a particular trust.

NHS E/I requires the data to feed into the Clinical Pathway dashboard which contain measures:

• Mortality rate from serious emergency conditions (7 days)

• Mortality rate from serious emergency conditions (30 days)

• Case fatality rate from serious emergency conditions

These measures help validate programs implemented to improve patient pathway e.g. High users unable to validate if the process to help patients find the best support are working, or did the patient die.

The dashboard provides guidance to make Urgent Emergency Care (UEC) systems aware of issues relating to patient outcomes and clinical effectiveness. This will inform long term strategic planning and monitor change to improve the quality of UEC.

The NHS E/I requirement for the CR Deaths data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Maternity. This will be used to understand how local systems are working effectively, such that Services and interventions put in place to prevent people from dying early are effective and living longer at a National, Regional and sub-regional level.

Patient Reported Outcome Measures (PROMs)

NHS E/I requires access to Patient Reported Outcome Measures data to enable the comparison of outcomes from healthcare services. This data assesses the quality of care delivered to NHS patients from the patient perspective.

The data will be used to understand variation and drivers in outcomes as reported by patients, and to explore how they differ in relation to patients undergoing the same set of procedures (hip replacements, knee replacements, groin hernia, varicose veins) within NHS providers. The data will also permit viewing patient outcomes at a National, Regional and sub-regional levels. It will provide NHS E/I details of the quality of care provided country wide, and focus on where progress can be made to ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities.

NHS E/I will require at least the last 6 years of data to start building the retrospective views of the data, and baseline how patients outcomes have changed historically.

PROMs data will also be used alongside a number of fields from the National SUS data in order to develop a dataset that will be used to generate a further analyses and insight that ensures NHS E/I can satisfy its statutory duties part of which includes a responsibility to consider the economic, social and environmental benefits to be achieved through commissioning.

National Diabetes Audit data (NDA):

NHS E/I requires access to the National Diabetes Audit data to;

• assess local practice against National Institute for Health and Care Excellence (NICE guidelines

• compare care and care outcomes with similar services and organisations

• identify gaps or shortfalls that are priorities for improvement

• identify and share best practice

• provide comprehensive national pictures of diabetes care and outcomes in England

NHS E/I has a statutory duty (under the Health and Social Care Act (2012)) to conduct an annual assessment of every CCG in England. The NDA data will be used to produce the Clinical Commissioning Group Improvement and Assessment Framework (CCGIAF) ratings for indicator 103b. Indicator 103b evaluates newly diagnosed people with diabetes (diagnosed less than a year) attend a structured education course. NHS E/I monitors the Clinical Commissioning Groups to ensure that the number of diabetes patients attending structured education are increasing.

Poor management can be associated with higher risk of the microvascular complications of diabetes (eye disease and blindness; kidney disease and kidney failure; foot disease, foot ulceration and amputation) and higher risk of cardiovascular disease (heart attack, angina, heart failure, stroke, and amputation). As such, NICE recommends that newly diagnosed diabetes patients are attend a structured education course within 12-months of diagnosis in order to improve understanding, empowerment and self-management of diabetes.

Whilst diabetes care process delivery and treatment target achievement are recommended in order to both monitor for the onset of diabetes complications and to minimise the risk of onset of diabetes complications, structured education is recommended to support self-management in order to achieve the same goals, as well as to achieve better understanding of the disease and better quality of life with diabetes.

The National Diabetes Audit data will also be required to monitor progress on the Transformation Funding provided to the Diabetes programme.

The Diabetes Transformation Funding was allocated to CCGs who had successfully bid for funding during 2017/18 to fund four separate workstreams for an initial two-year period as follows:

• Increase the treatment target attainment among CCGs and reduce the variation between CCGs to improve outcomes for patients with diabetes and reduce complications

• Increase attendance at structured education and thus improve self-management and treatment target attainment

• Establish or expand Multi-disciplinary footcare teams to provide a dedicated service improving outcomes, reduce the length of stay and the number of amputations

• Implement or increase the Diabetes inpatient specialist nurse provision to provide support and education to inpatients with diabetes to reduce the complications and provide training

NHS E/I will require this data to be fed into a reporting dashboard for the Diabetes Transformation Programme Board, that is to be updated on a regular basis with data from NDA, National SUS, National Diabetes Inpatient Audit data (NaDIA).

NHS E/I will require at least the last 10 years of data to start building the retrospective views of the data, and baseline how delivery of diabetes care has changed historically.

Clinical Registry Data:

NHS E/I requires access to data collected within Clinical Registries, Databases and Audits. Part of NHS E/I’s responsibility oversees the budget, planning, delivery and day-to-day operation of the commissioning side of the NHS in England as set out in the Health and Social Care Act 2012.

Every year NHS E/I recommissions, commissions or procures health services from health service providers. It is a complex process, involving the assessment and understanding of a population’s health needs, the planning of services to meet those needs and securing services on a limited budget, then monitoring the services procured. When a service is procured, this is done through a contract. The contract – is referring the NHS Standard Contract, sets out the type of service, how much

Any outputs to 3rd parties not included as Data Controller/Processor in this application/agreement must be aggregated (with small number suppression applied in line with NHS Digital requirements).

All datasets will be used to:

1. Allow NHS E/I to meet its ongoing statutory duties under the NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23. Specifically – ‘to exercise its functions ensuring that health services are provided in an integrated way where this would improve quality and outcome of services and reduce inequalities’.

2. Realise data quality improvements initiatives including reports to ensure that NHS E/I data processing has been carried out correctly (e.g. expected volume of specialised activity service line codes derived).

3. Provide an aggregate activity and finance report which will be used to populate an NHS E/I integrated activity and finance report for the monthly NHS E/I Executive Group Meeting. This has now been introduced (the benefits from this, and related SUS analyses included in the following section).

4. Analyse the impact of changes to NHS commissioning business rules (e.g. tariff changes, commissioner assignment, specialised services identification rules, HRG grouping).

5. Facilitate proactive management of NHS E/I directly commissioned services using pseudonymised or aggregate data (with small number suppression) only. (This is dependent on the analysis requirement as to whether the output used is pseudonymised or aggregate data.)

6. Enhance statistical analysis to facilitate proactive management of transformation programmes by local health systems on behalf of NHS E/I.

7. Monitor and analyse outpatient and community services; alternatives to inpatient care.

8. Monitor and analyse of new patient care pathways introduced to support the transformation of services for people with learning disability and/or autism. Access to data will specifically allow:

- Analysis of inpatient services and activity for people with learning disability and/or autism

- Analysis of outpatient and community services and activity for people with learning disability and/or autism

- Analysis of patient pathways as patients move between services

9. Analyse factors that result in high service usage.

10. Analyse the usefulness of diagnosis coding. Analysis will firstly focus on an understanding of the completeness and quality of coding in the dataset to provide a basis for any further analysis. NHS E/I would like to understand the completeness and validity of this data item, as well as identifying any geographical trends or particular providers which show problems with coding completeness. Access to the data would enable further discussion of coding practices in providers for casemix complexity. The intelligence can be shared through commissioning routes to help drive up coding completeness and accuracy to make any subsequent analysis more meaningful.

11. Analyse the spread of diagnoses geographically and demographically, to identify any trends as well as diagnoses recorded over time (given a robust starting point for coding accuracy and completeness). Admissions and readmissions and activity could also be analysed by diagnosis to better understand these trends and potential differences in provider models to inform commissioning decisions and service improvement.

12. Provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint. An analysis of restraint to identify any trends or outliers across providers, CCGs and sub-regions. The analysis will also include the frequency of restraint per patient and by ward type. This will highlight any areas for concern in the use of restraint to inform further discussions with commissioners. As the restraint type is added to the MHSDS in v2.0 this will provide further insight and areas for focus in discussions with commissioners. The aim of this is to provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint.

13. Achieve the service improvements required, in association with the findings from the report “The commissioning of specialised services in the NHS” by the National Audit Office (NAO), whereby the findings suggested that NHS E/I does not have sufficient information to drive service improvement in specialised commissioning.

14. Undertake health economic modelling using:

a. Analysis on provider performance against targets.

b. Learning from and predicting likely patient pathways for certain conditions, in order to influence early interventions and other treatments for patients.

c. Analysis of outcome measures for differential treatments, accounting for the full patient pathway.

15. Provide commissioning cycle support for grouping and re-costing previous activity.

16. Undertake commissioner reporting, including:

a. Summary by provider view - plan & actuals year to date (YTD).

b. Summary by Patient Outcome Data (POD) view - plan & actuals YTD.

c. Summary by provider view - activity & finance variance by POD.

d. Planned care by provider view - activity & finance plan & actuals YTD.

e. Planned care by POD view - activity plan & actuals YTD.

f. Provider reporting.

g. Statutory returns.

h. Statutory returns - monthly activity return.

i. Statutory returns - quarterly activity return.

j. Delayed discharges.

k. Quality & performance referral to treatment reporting.

17. Produce aggregate reports for CCG Business Intelligence.

18. Produce project / programme level dashboards.

19. Monitor acute / community / mental health quality matrix.

20. Facilitate clinical coding reviews / audits.

21. Undertake budget reporting with drill down capability to various levels.

22. Dashboards that are produced can cover all levels of the NHS – National, Regional and Sub-regional. The aim is to highlight trends of areas where in some cases NHSE are able to the levels of frequency of attendees accessing services.

23. NHS E/I is creating a population health management dashboard which will give each combined local health economy an aggregated (with small numbers suppressed) view of national data, facilitating benchmarking. This will inform NHS E/I about the relative performance of these emerging combined health and social care resources, facilitating information exchange and assurance that the new model of operation is being effective and meeting its objectives.

24. Any outputs produced from processing IAPT data must comply with the IAPT Disclosure Controls i.e.: o In order to prevent suppressed numbers from being calculated through differencing other published numbers from totals, all sub-national counts have been rounded to the nearest 5. o Sub-national rates (percentages) are rounded to the nearest whole percent to prevent disclosure. National rates are rounded to one decimal place.

Clinical Registry Data:

1. Routine reports and dashboards (where small numbers appear, these will be suppressed in line with NHS Digital guidance) so that all levels of NHS E/I (national, regional and sub regional) can access the views, analyses and insight. The intelligence gathered will be made available to drive improvement, efficiency as well as recognising ‘model hospital behaviours’ in specialist fields.

2. Produce analysis of variation and trends at National, Regional and Sub regional levels, not just from a provider view, but from a commissioning prospective as well.

3. Produce analysis of variation and drivers in outcomes as reported by each disease specific Registry, and to explore how they differ in relation to patients undergoing the same set of procedures and treatments in NHS providers.

4. Inform decisions of what can be done to reduce the variation and improve the care given to patients.

The specific Clinical Registry datasets included in this Data Sharing Agreement at the time of approval are:

- TARN, Trauma Audit and Research Network

- UK Renal Registry

- UK ROC, UK Rehabilitation Outcomes Collaborative

- NHFD, National Hip Fracture Database

- PICANet, Paediatric Intensive Care Audit Network

- BSR, British Spine Registry

Other clinical registry datasets may be added to this list, subject to approval from NHS Digital, including review and recommendation by the IGARD (independent expert group advising NHS Digital on the release of data).

e-Referral Service (eRS)

1. Manage demand, by understanding the quantity of assessments required NHS E/I are able to improve the care service for patients by predicting the impact on certain care pathways and ensure the secondary care system has enough capacity to manage the demand.

2. With the use of e-RS data NHS E/I will be able to identify inequalities and improvements of referrals (when comparing either trusts or CCGs) and therefore direct service redesign or invest to drive improvement.. NHS E/I are unable to see the contents of the referral letters.

3. NHS E/I may identify low priority procedures which could be directed to community-based alternatives and as such commission these services and deflect referrals for low priority procedures resulting in a reduction in hospital referrals.

4. Using pseudonymised e-RS data to provide intelligence will support the understanding of the quantity of assessments required and demand management; NHS E/I will be able to improve the care service for patients by predicting the impact on certain care pathways and support the secondary care system in ensuring enough capacity to manage the demand.

Births Data

1. Manage demand - by understanding the quantity of births taking place, NHS E/I are able to improve the care service for all types of settings for Births and ensure adequate funding is available.

2. In improving the quality of reporting, understanding the levels and types of Neonatal deaths and injuries that are occurring in NHS hospitals.

3. NHS E/I may identify causes or trends in care of Neonates of practices contributing to deaths and injuries.

4. Using pseudonymised and linked data report back on Indictor measures set out in the Long Term Plan to track outcomes of all births, and directing planning and delivering additional resources where identified.

Summary Hospital-level Mortality Indicator (SHMI)

NHS E/I plan to produce comparison benchmarks for hospital mortality indicators across different trusts.

SHMI data will inform various strategies, reports and evaluations for trusts.

SHMI data will support investigations in particular trust's mortality outcomes.

NHS 111 Online Dataset

A range of reports, and analysis processed in an ad-hoc manner to improve the understanding of scope and variation in patient pathways across the national, regional and sub-regional areas.

Medicines Dispensed in Primary Care

Primary Care Strategy Evaluation Reports; enabling better understanding of primary care medication across the healthcare system. Which in turn will support commissioning decision making within the NHS.

Medicines Value Programme;

There are over 300 indictors which the Right Care team also monitors. As an example this data will support the production of a Urinary Tract Infection (UTI) Focus pack, with dashboard reporting in progress.

The medicines value programme aims to improve health outcomes from medicines and ensure that NHS E/I and NHS Improvement are getting the best value from the NHS medicines bill. With aims to; enable people to access treatment that is clinically effective, based on the latest scientific discovery, as well as cost-effective.

Outcomes Based Healthcare (OBH)

Reports specific to commissioning queries and projects devised by NHSE/I.

Analysis specific to commissioning queries and projects devised by NHSE/I.

NHS England would not have been able to meet some of its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23) and to meet the requirements of the Five Year Forward View, without access to SUS data.

Yielded benefits have been partially met with the SUS data. Access has enabled NHS England to check the quality and efficiency of the health services that are commissioned and to plan for the future needs of patients.

Reports and dashboards have been created to demonstrate management of commissioned services, including contract management, performance management, inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities.

Access to Mental health and IAPT data has allowed NHS England to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the Mental Health Five Year Forward View, such as waiting time standards for early intervention in psychosis.

NHS England through accessing the data provided, have been able to develop insight and understanding of the services commissioned and ultimately view how this organisation can better support and improve the care and quality patients receive, as well as the ambition set out to help people live longer. There is a continuing requirement for NHS England to have access the data so that all objectives, purposes, outputs and benefits can continue to be realised.

Receiving the data extracts has enabled NHSE Specialised Commissioning to carry out it’s statutory duties such as meeting it’s contractual obligations in monitoring the activity being carried out in a specialised service, (e.g. Major Trauma and Renal Services), supporting the accurate calculation of the cost of services and payments to providers and supporting the improvement in data completeness and data quality related to a specialised service (e.g. receiving data on Complex Spinal Service from the British Spine Registry).

Examples of specific benefits of clinical data flows into the NCDR via the DARS:

Data received from the UK Renal Registry is also fundamental for developing intelligence to support the Service Review of Renal Services by Specialised Commissioning Service Transformation Team which began recently.

Data received from PICANet is supporting the implementation of the recommendations of the Service Review of Paediatric Critical Care and Surgery in Children (report published 2019).

Data received from UK ROC provides the basis of the currency for payment of Specialised Rehabilitation Services and without the data flow Specialised Commissioners would not be able to monitor the level of activity at each of the Specialised Rehabilitation Centres or calculate the appropriate payments for the activity the centres have carried out.

Additional benefits particular to COVID-19, January 2020 onwards:

Access to the clinical database data has also been vital this year to be able to monitor the change in planned or expected activity and variation in this as a result of the need to respond to COVID-19 – for example Renal Services – where there has been a massive upsurge in the need for dialysis directly related to meeting the need of patients with COVID-19, or the significant decrease in activity related to elective procedures for Complex Spinal Surgery, as theatres and staff have been re-deployed to meet the needs of patients hospitalised with COVID-19.