BRIAN (Brain Tumour Information and Analysis Network) is an online information system that will enable patients to make better-informed decisions about their treatment and accelerate research to find a cure.

The Brain Tumour Charity · Charity

Expired The latest version ended on 30 October 2024. The September 2026 register still lists the agreement, but its term has passed.

Reference: DARS-NIC-158754-R5T3V
Latest version: v4.9
Term of latest version: 31 October 2021 to 30 October 2024
Start date: Before 14 March 2019
Data controller: Sole Data Controller
Commercial purposes: Yes
Sublicensing: No
Files released to date: 148

Why the data was released

Objective for processing

Brain tumours are the biggest cancer killer of children and adults under 40. Over 100,000 people are currently living with a brain tumour in the UK and most are coping with a reduced quality of life. Whilst survival has doubled across all cancers, ten-year survival rates for brain tumours have improved little for adults in over 40 years and in that time the number of brain tumour diagnoses has doubled. Within the same time frame the proportion of people who survived for ten years after leukaemia diagnosis has increased more than six -fold. Survival rates for brain tumour patients remain amongst the poorest of all cancers. The Brain Tumour Charity (The Charity) has a strategy to double survival and halve the harm that brain tumours have on quality of life. One of the ways The Charity strives to achieve this strategy is by funding research. The Charity has committed over £50 million to date on pioneering projects that will help adults and children with brain tumours. The Charity funds research through a competitive, fair and transparent process of best practice called peer review to ensure only the very best research is selected that will have a real impact on those affected by brain tumours.

The aim of this Agreement is to aid The Charity in to establishing a research database, Brain tumouR Information and Analysis Network (BRIAN), which can be used to facilitate research projects from third parties with suitable permissions and to enable cohort data to be included in BRIAN and selected from a data dictionary. BRIAN currently contains NHS Digital data from the four HES Datasets, the Diagnostic Imaging Dataset and the Civil Registration Deaths.

The Charity has also supplied NHS Digital with a consented cohort of approx. 640 people who have agreed to share their NHS Data with BRIAN. This will allow The Charity to identify the consented individuals and link their HES, DIDS and Civil Registration data to quality of life data already entered into BRIAN. NHS Digital will provide identifiable extracts of HES, mortality and DIDS for a separate group of people who have consented for the Charity to access their health records.

The Charity has sought to obtain data from NHS Digital relating to patients treated in England and will then seek to extend coverage to include those treated in Wales, Scotland and Northern Ireland by applying for datasets from the equivalent organisations to NHS Digital in the devolved nations. Geographical coverage across the whole country is essential so that The Charity can compare variations in treatment and outcomes between regions. In order to build a research database that is fit for purpose for researchers The Charity needs to be able to provide long time series of data and so this is the reason for The Charity requesting data back as far as 2008.

There are several key stakeholders of BRIAN: patients/carers; researchers and The Charity itself. The Brain Tumour Charity have identified several objectives for processing, these are:

1) To provide The Charity Support Department and Senior Management with information about the brain tumour care pathway not available elsewhere, to inform the services provided and produce anonymised reports to raise public awareness about the impact of brain tumours on quality of life. To facilitate this, BRIAN will be linked with relevant ODS Standard Repository Data freely available from the NHS Digital website, DIDs data, Civil Registration data and quality of life data supplied by the patients themselves.

2) In addition to informing the services The Charity provides, a series of surveillance reports will be produced. These reports will include information related to the time taken to diagnose brain tumours in the various age bands; information on availability of services from region to region; information relating to life expectancy once diagnosis has taken place; frequency of hospital visits; journey time to appointments; variations on the brain tumour pathways from region to region and survival rates derived from the Civil Registration data set and other related information requested by patients.

3) When the data is stored and linked in BRIAN, researchers will be able to complete an application process to request and justify data items from a data dictionary. Any data made available to researchers will be aggregated with small numbers suppressed in line with HES Analysis Guidance.

The Charity will use BRIAN information to inform and change central policy which has been demonstrated through the introduction of 5-ALA across England after The Charity campaigned and raised awareness of the geographical discrepancies. 5-ALA (known as “The Pink Drink”) is a valuable surgical aid which helps neurosurgeons see and successfully remove more of a tumour during surgery.

4) Access to the Hospital Episode Statistics (HES) datasets (Admitted Patient Care, Outpatient, Accident & Emergency) at a patient level will enable reporting on the experience of brain tumour patients at NHS Hospitals in England, particularly the nature of their referral to secondary care, the healthcare professionals involved in their care and the period of time that episode of care lasted. Data on the period from operation to discharge may provide insights on the outcomes of a particular treatment. Identifiable patient information is obtained for those 640 individuals who have consented for the Charity to access their health records, pseudonymised data is obtained for all those who have received a diagnosis of a brain tumour based on a list of relevant ICD-10 codes.

5) Civil registration mortality data is key to measuring the optimum treatment pathway and survival rates. Date of death is required to calculate those survival rates. Pseudonymised data is obtained for all those who have received a diagnosis of a brain tumour.

6) DIDs data is required to allow reporting on events that happen in hospital such as scans and enables the type of scan to be identified and also the part of the body that was scanned. Pseudonymised data is obtained for all those who have received a diagnosis of a brain tumour.

BRIAN will also allow those patients who have consented to access their own identifiable health records and read them in plain text. Providing unique information derived from linking quality of life data entered by patients with HES/DID and Civil Registration allows them to improve the management of their situation. This will be achieved by providing them with aggregated information about their situation in one place. The smart combining of data takes place in the back-end database which allows the creation of anonymised reports.

The Charity will produce reports to raise public awareness of the devastating impact of brain tumours. Some of these reports will be produced with the analytical assistance of Costello Medical1. Aggregated reports will highlight issues which will include:-

· Data about the experience of brain tumour patients in the diagnosis of their condition - how and where diagnosis happened and at what stage of tumour growth – will help to inform understanding of the adult diagnostic pathway and how that affected their prognosis and inform patient choice.

· Understanding the factors behind late diagnosis of brain tumours to help researchers and clinicians to develop referral pathways that will reduce avoidable deaths and life-long disabilities.

· By learning from patients who are living with a brain tumour, people who are currently affected can understand more about the impact of different treatments and management options for a particular grade of tumour.

· By linking quality of life data received directly from patients to HES data, The Charity can look at new insights into the impact of prescribed and non-prescribed treatments on quality of life.

· By linking Civil Registration data to HES, data analysts can do meaningful analysis on survival rates rather than be limited to just those people who pass away in hospital.

· Ability to differentiate the type of scans a patient undertakes and the use of contrasts in the scanning procedure. This will to inform us of the different use of scans from region to region.

· Researchers and clinicians can use this data to inform clinical practice to improve the existing pathway for brain tumour patients and the standard of care available in the NHS

The quality-of-life patient data is derived from patients/carers who have consented for The Charity to access their health records. The Charity has produced a series of Patient Information Sheets (PIS) and Consent Forms (CFs) to facilitate this consent process to ensure there are no surprises about what the data will be used for in the future and various opt out options including opting out from BRIAN and/or opting out of their data being used for specific research project. The PIS and CFs are reviewed regularly and provide the ability for patients to progress from children to adults.

The impact of this analysis is measured through the monitoring of The Charity strategy and associated Key Performance Indicators which are reviewed and measured regularly. The Charity is towards the end of a five-year strategy and can demonstrate that diagnosis time in children has reduced significantly as a direct result of campaigning. Once The Charity has reached the pre-determined KPI targets they are revised to ensure they stay challenging and effective. The Charity ensures the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours.

The Charity has worked closely with NHS Digital to understand more about the HES datasets in order to minimise the data fields that it has selected. The Charity has also spent a significant amount of time studying the HES data dictionaries and has sent three members of staff on the University of York course “Analysing Patient-Level Data using Hospital Episode Statistics (HES)”.

The Brain Tumour Charity is the Sole Data Controller. The Costello Medical and Microsoft Ltd are Data Processors.

Costello Medical will assist The Charity with data analyses, and the creation of anonymised reports to be published on BRIAN. Costello Medical will work on specific projects for The Charity, the nature of which are yet to be determined, nevertheless all future projects will:

- Provide the Charity Support Department and Senior Management with information about brain tumour care pathways that is not available elsewhere.

- Produce anonymised reports to raise public awareness of Brain Tumours, and their impact on Quality of Life

- Produce Surveillance Reports

As such it has been determined that this work falls within the overarching purpose of this Agreement. Costello Medical will not make decisions regarding how NHS Digital data will be processed and will only be working under the direction of The Brain Tumour Charity. Due to a lack of funds, it is not possible for the Charity to carry out all analyses in-house as such some of the analyses have been outsourced to Costello Medical, who have offered to carry out this work pro bono.

Costello Medical is a commercial organisation that provides a variety of services to the healthcare sector; however, this work is being carried out on a pro bono basis. The work carried out by Costello Medical may grant them additional exposure within the healthcare and/or charity sector(s), but the overall benefit to the provision of health and social care in England is far greater than any potential benefit to Costello Medical.

Microsoft Ltd supply Cloud Services for The Brain Tumour Charity and are therefore a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement

The lawful basis for this processing is:

1) The Article 6 justification for processing the data is 1 (f), which states that “processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party, except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child.” The Charity is patient led and is seeking to use data on the treatment, care and quality of life of brain tumour patients to benefit both current and future brain tumour patients. In a 2017 survey, The Charity found that almost all of those diagnosed with a brain tumour would be willing to share information about their diagnosis and subsequent treatment in order to help develop better treatments. Of 270 respondents to the survey, 97% (262 respondents) agreed with the statement: “I would be willing to give my medical and health data to the data bank (BRIAN) to help improve brain tumour treatment and care." Asked to explain their motivation, almost 88% (230 people) said they would do it “to improve outcomes and help others with the disease now and in the future, even if I get no benefit", while 8% (21 people) said they would do it for the improvements it could bring to their own care, treatment and quality of life.

2) The Article 9 justification for processing the data is 2 (j), which states that “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.” BRIAN is a contemporary 21st Century patient-led databank / registry and a first step towards building a global brain tumour database. BRIAN will contribute to The Charity’s strategic objectives of doubling survival and halving the harm caused by brain tumours by 2020. BRIAN will combine national brain tumour data sets with patient entered /obtained data and make this available, in an ethical responsible manner, to researchers, clinicians and patients alike. BRIAN is becoming the foremost, pioneering, data platform, proving the value of such a platform for collecting and securely sharing both healthcare records and patient-reported quality of life information. BRIAN will become the trusted tool of choice for those affected with a brain tumour in harnessing the power of their data, to bring hope and enable those affected with a brain tumour to make informed decisions, using the power of their collective, curated data to improve outcomes. BRIAN will be the leading source of reliable, timely research data, giving researchers and clinicians rapid access to extensive, high-quality, longitudinal patient data, driving improvements in quality of life and accelerating the path to a cure.

Processing activities

NHS Digital will identify the pseudonymised cohort from HES based on the ICD-10 diagnosis codes supplied by The Charity and construct a pseudo dataset that contains all the episodes for patients identified.

In tandem The Charity will send NHS Digital the following details for everyone in the consented cohort: a BRIAN ID (i.e., a study ID), an NHS Number, the date of birth, forename, surname and gender. NHS Digital will endeavour to map each individual in the consented cohort to an individual in the pseudo cohort. For each individual that is successfully mapped in this way, NHS Digital will then append an entry to the pseudo dataset for the BRIAN ID, as well as appending entries for the identifiable fields that The Charity has requested.

At the point the data is uploaded to BRIAN any identifiable elements have been stripped out (name, address, email address, NHS number) and sent to a system which is kept completely separate from BRIAN. This is for security purposes and mitigates any risk of re-identifiability. . There are three portals which are designed for each user and they are Patient, Research and Analyst. Each person consenting to use BRIAN is allocated a consent status to differentiate their role and level of access to the data and has their NHS number (or identity) validated.

Once the cohort of identifiable data is received, from national data sources it will be mapped and loaded into a relational data schema (BRIAN) alongside SNOMED, NICIP Codes and Quality of Life Data. It will then be mapped to 'master' and 'reference' data sourced from the NHS Digital ODS/TRUD sites so that the HES record will have meaning and be research ready by the addition of this intelligence.

The Charity will produce reports and insights needed to support its strategic objectives. The types of reports expected to be produced are listed in the outputs section. Outputs produced by the Charity will be aggregated data with small numbers suppressed in line with the HES Analysis Guide.

Policy for use and release of the data – Access to BRIAN data, whether requested by Charity staff, patients, carers, researchers, clinicians, or healthcare managers, will be controlled by the Data Access Board. This Board will include academics, clinicians and The Charity's data governance lead and Caldicott Guardian. Access to BRIAN will be permitted where the requester can justify the need in terms of better outcomes for current or future patients. The requester will also need to show that they have appropriate training and work in a sufficiently secure environment given the sensitivity of the data they will be accessing. For each request the access will be limited to the minimum required to meet the agreed objectives. The Charity will not share, or give individuals from third parties access to any NHS Digital data with the exception of aggregated outputs with small numbers supressed.

BRIAN has been developed as a Microsoft SQLServer database. SQLServer has comprehensive audit features which will be used to identify if anyone has been attempting to access data for which they are not authorised, or if anyone has been trying to change the current security settings. Overall database security will be the responsibility of a Database Administrator and they will routinely execute audit reports. They will also interpret the results of the audit reports and carry out any necessary action. Thresholds will be set in the database which will automatically alert the Database Administrator if a significant security breach is detected.

Access to the database is restricted by the strict firewalls in place. The web server will be connected over a WAN network but there will be strict firewall rules in place to control who can access the servers. The database server will be on a VPN connection with the web server, and the database server will not be publicly accessible. Access to the web server will be restricted to authorised personnel and can only be connected to from the physical building – this will be implemented using IP rules on the firewall.

The Charity are currently in the process of recruiting for their new data science team, it is expected that all those recruited will be substantive employees of The Charity or contractors. However, should any individuals be employed under honorary contracts The Charity will not grant such individuals access to NHS Digital data until their agreement with NHS Digital has been appropriately amended.

Only substantive employees of The Charity or its contractor, who is an individual employed under the same terms and conditions of employment as substantive employees, have access to identifiable NHS Digital data.

Substantive employees of Costello Medical will be given access to pseudonymised data only, bespoke extracts will be produced for Costello Medical by The Charity on a project-by-project basis containing only the fields necessary for analyses. Costello Medical will access this data via The Charity’s VRE and will only process the data provided by NHS Digital at the locations listed within this DSA.

All those with access to the data will receive appropriate training in data protection and confidentiality.

The data from NHS Digital will not be used for any purpose other than that outlined in this Agreement. There will be no attempt to re-identify individuals in the pseudonymised dataset.

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data).

Expected output

The Charity will use pseudonymised HES, DID and Civil Registration data to create surveillance reports of the type listed below and data extracts specifically designed for research purposes:

• Demographics of people living with a brain tumour to highlight any regional variations and investigate why.

• Age at time of diagnosis to see whether that is changing over time and see if HES data can explain why.

• Route and time taken to diagnose a brain tumour for adults and improve on the existing success with children by reducing diagnosis time from over 9 weeks to 6.5 weeks. With BRIAN it will be simpler and quicker to identify the trends and identify what creates the improvements.

• Time taken to receive first course of treatment and the variations that occur.

• Time taken to tumour recurrence and life expectancy after diagnosis and associated variations.

• State of tumour and changes that occur as a result of a procedure or treatment.

• Impact of different brain tumour treatments.

• Country/Regional brain tumour statistics (type, volume and region) (HES).

• Regional comparisons of treatment and care pathways and service provision.

• Information about different brain tumour patient pathways (HES).

• Adherence to NICE guidelines.

• Brain tumour comorbidities (HES).

• Number of brain tumour surgeries carried out per hospital (HES).

• Survival trends and rates (Civil Registration data).

• Causes of death (Civil Registration data).

• Types of scans being undertaken (DID).

• Location of scanning (DID).

• Waiting times between an imaging (e.g. MRI) request, a test and a result (DID).

• For each brain tumour related imaging procedure type, the total number of procedures conducted each month (DID).

• For each brain tumour related imaging procedure type, the percentage of tests which returned same-day test results each month (DID)

• For each brain tumour related imaging procedure type, the breakdown of referral methods (DID).

• Anonymised bespoke data extracts for research purposes (stored in BRIAN)

The Charity has produced a number of these reports already and made them available to brain tumour patients through the BRIAN patient portal (a web-app) that was launched in September 2019. The next group of reports will be launched in the patient portal in late 2021. More details appear in the Benefits section. In addition to publishing the surveillance reports in the BRIAN patient portal, The Charity will include findings in our annual report and other Charity publications such as its quarterly newsletter. This newsletter, called The Grey Matters, has a circulation of 20,000 and is distributed to supporters, patients and carers.

Any data published will always be aggregated with small numbers suppressed, in line with the HES Analysis Guide.

The Charity regularly attends conferences dedicated to brain tumours alongside many healthcare professionals who are closely affiliated with The Charity. Information shared with delegates is used to encourage collaborations of people involved with brain tumours to find a cure through our research funding and to drive improvements within their own areas of expertise and influence. A possible example is the adoption of 'in theatre' MRI scanners for ensuring maximum removal of tumour cells; these facilities are not currently available in all hospital trusts because of the high investment costs.

The Charity often hosts meetings with researchers and attends poster sessions at conferences, as well as taking speaking roles at conferences on topics related to brain tumour research, support and also in order to share details of its work.

Below are examples of conferences that The Brain Tumour Charity attends to share findings from research studies and data analysis and discuss the process of data sharing through the sub-licencing process.

• International Symposium on Pediatric Neuro-Oncology (ISPNO)

• British Neuro-Oncology Society (BNOS)

• Society of British Neurosurgical Surgeons (SBNS) & Association of British Neurologists (ABN)

• Society of NeuroOncology (SNO)

The Charity also has a dedicated Healthcare Engagement team who regularly visit clinical teams, attend information days and host in-house healthcare professional study days to share best practice and promote recruitment to BRIAN its benefits. These study days have proved to be excellent in facilitating the learning and sharing of best practice across the UK and The Charity plans to be able to share key findings about the patient pathway at future study days to continue to develop clinical services nationally and highlight the key issues faced by brain tumour patients.

The Charity has committed to investing £50 million to date in research to find a cure for brain tumours and to reduce the harm they have on quality of life through earlier intervention and the provision of research data.

Costello Medical will aid The Charity in producing aggregated outputs (small numbers supressed in line with HES Analysis) that will be published on BRIAN, as well as non-aggregated outputs that will be presented to The Charity Support Department and Senior Management. Costello Medical will be cited as co-authors of outputs produced where applicable.

It is expected that Costello Medical will produce publicly available reports based on the findings of each project, this will be done in conjunction with The Charity. Should any data be contained within these reports it will be aggregated with small numbers supressed in line with HES Analysis Guidance. It is expected that the production of such reports will lead to associated workshops and presentations.

Expected measurable benefits

The Charity has just reached the end of a five-year strategic plan which ran from 2015 to 2020. The plan included a number of SMART (Specific, Measurable, Achievable, Relevant, Time-bound) initiatives and enablers. The creation of the research database was a first step towards delivering on the longer-term objections, with specific initiatives relating to BRIAN:

A cure can't wait - having access to HES/DID/Civil Registration and other data will help The Charity identify the most promising treatment and care pathways, actions and outcomes. Once identified The Charity can influence the wider adoption of these across the NHS. This will immediately deliver marginal improvements in the lives of brain tumour patients and may, over time, make the most aggressive tumours a chronic rather than a terminal condition. The Charity has numerous ways of ensuring findings reach the right audience and are adopted appropriately. This includes speaking at various conferences and seminars and influencing politicians and senior healthcare professionals and managers.

Every patient is a research patient - The Charity wants 70% of the newly diagnosed patients to contribute to some form of research by making them aware of clinical trials and tools such as BRIAN to provide intervention as early as possible. BRIAN is helping to improve the recruitment rate of brain tumour patients from a low of less than 10%. BRIAN is a more efficient way of matching patients to available trials.

Early intervention to reduce diagnosis time - The Charity has a campaign that has reduced diagnosis time for children from nine weeks to six and half weeks and this will be reduced to four weeks by 2020. Evidence tells us that early diagnosis and treatment is key to better and longer survival rates. The analysis of HES and other data sets will allow The Charity to identify both the time to diagnosis and the signs that can lead to an earlier diagnosis. With extensive data, guidelines can be produced for physicians, parents and patients which lead to an early, and accurate diagnosis. The Charity is launching a campaign to reduce diagnosis time for adults and halve it. Improving quality of care pathways and day-to-day life - over 90% of beneficiaries responding to a survey distributed to those people affected by brain tumours and supported by The Charity stated that The Charity makes a meaningful difference to their life. This is now a strategic KPI on The Charity's balanced scorecard with an improvement target. The Charity will produce surveillance reports and raise public awareness of brain tumours, and publish them via the BRIAN patient portal, website, forums, conferences, and media channels such as newspapers, television and radio. The Charity is committed to raise the awareness of brain tumours and their devastating impact on patients and their families in order to drive improvements to treatment and care pathways. The Charity also plans to support patients in managing their quality of care by offering information and self-management tools through the BRIAN patient interface. This reduces weeks of internet searches and a confusing array of information for patients and carers when time may be short or better spent with loved ones. The timescales will be within months of receiving HES data.

These initiatives have been derived following extensive experience gained from working with, and improving the lives of, brain tumour patients. The Charity also has an extensive network of clinicians, researchers, and institutions who support the strategic objectives, and, in many cases, receive funding and resources directly from The Charity. The Charity believes it has the experience to choose the right initiatives, networks, influence, and recognition to affect the necessary change. The Charity currently needs hard evidence to support the strategic initiatives, the data that will confirm the most effective treatment pathways, or identify areas of weakness, or that require additional investment.

Equal access to the best treatment and care pathways will be derived from surveillance reports and analysis to identify the optimum treatment pathway for different patient groups with different types of brain tumours. The Charity will implement a programme to first publicise these pathways, to obtain general agreement, and then to influence their wider adoption. The Charity will ensure that all patients that are contactable through the various channels available, are made aware of the options available and the likely outcomes for a given situation. The Charity will also support clinicians in producing better outcomes for patients by understanding the variation in access to treatment/clinical procedures beyond their own immediate clinic.

Reports will be used by The Charity to develop support services to brain tumour patients who approach The Charity for help. This may include advice on treatment centres of excellence, different treatment pathways, identifying possible clinical trials, and preparing for higher quality 'end of life' care. With the addition of Civil Registration data The Charity can establish survival rates based on location and treatment options to establish any evidence of variation and why some people survive longer than others. For example, continuous chemotherapy treatment has extended the life for GBM patients, but it is not known for how long or for how many people. The Charity's clinical nurse specialists want accurate, evidence-based information that can be shared with newly diagnosed patients. This can reduce the patients' stress after days of internet searches causing exhaustion, confusion and fear that can lead to desperate behaviours such as expensive overseas treatments which may not always be beneficial. Trusted information will be in one place. More research into the types of scans people receive can be derived from DID data which will allow for reporting on the location and type of scans and what impact it has on treatment decisions or survival rates.

Additional information extracted from the analysis will be used to inform the wider public of the early signs of brain tumours and to raise public awareness of the impact of living with a brain tumour. Raising awareness helps with fundraising which increases the money available for targeted research, for employing more clinical nurse specialists, and for driving change across the NHS such as the adoption of 5 ALA. As seen in other disease areas, The Charity believes that increasing public awareness brings about positive change in treatments, outcomes and service provision.

The analyses to be carried out by Costello Medical, and the subsequent production of publicly available reports, will enable The Charity to identify areas where the care and treatment of Brain Tumour patients is currently sub-optimal. The Charity intend to make evidence-based suggestions on how current care pathways can be bettered. It is expected that this will lead to change in NHS policy, and improved patient outcomes. The work carried out by Costello Medical may grant them additional exposure within the healthcare and/or charity sector(s), but the overall benefit to the provision of health and social care in England is far greater than any potential benefit to Costello Medical.

Going forward, the charity want to be able to continue sharing these existing visual reports through the BRIAN patient portal, as well as developing further reports, in order to increase the usefulness of the information that the charity share with brain tumour patients.

Benefits reported so far

It has taken time for The Charity BRIAN team analysts to understand the characteristics and limitations of the data in order to use it appropriately for reporting. It was only possible for The Charity to start to develop a full understanding of the data set once the actual data was received from NHS Digital. Analysts were able to look at the content and completeness of the data to derive the processing, mapping and error management rules which are critical to the project.

Data insight analysts in the team have produced visual reports from the pseudonymised data disseminations from NHSD. These reports show aggregated data. The first 3 reports from NHSD data were published in the BRIAN patient portal (a web-app) for brain tumour patients in September 2019. These data insights showed analysis of brain tumour comorbidities, incidences of brain tumours on a map and the number of brain tumour surgeries carried out by each hospital. A further 5 visual reports are due to be published in the BRIAN patient portal in November 2020, using data from the DID and civil registration datasets. These will report on (i) the most frequently cited causes of death amongst brain tumour patients, (ii) the average waiting times between an imaging (e.g. MRI) request, a test and a result, (iii) for each brain tumour related imaging procedure type, the total number of procedures conducted each month, (iv) for each brain tumour related imaging procedure type, the percentage of tests which returned same-day test results each month and (v) for each brain tumour related imaging procedure type, the breakdown of referral methods. Insights of this nature help inform patients about their condition and allow them to make more informed decisions about their treatment and care, as well as helping to highlight areas of excellence in service provision. Brain tumour patients can filter these visualisations by relevant criteria such as tumour behaviour, age group and sex to ensure they receive data relevant to their own personal circumstances.

Datasets on the latest version

Legal basis for provision: Health and Social Care Act 2012 – s261(2)(c); Health and Social Care Act 2012 - s261 - 'Other dissemination of information'

Datasets approved under DARS-NIC-158754-R5T3V-v4.9
Dataset	Type of data	Sensitivity	Frequency	Confidential data
Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset	Identifiable	Non-Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Civil Registrations of Death - Secondary Care Cut	Anonymised - ICO Code Compliant	Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Diagnostic Imaging Data Set (DID)	Anonymised - ICO Code Compliant	Non-Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
HES:Civil Registration (Deaths) bridge	Identifiable	Non-Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Accident and Emergency (HES A and E)	Anonymised - ICO Code Compliant	Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Accident and Emergency (HES A and E)	Identifiable	Non-Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Admitted Patient Care (HES APC)	Anonymised - ICO Code Compliant	Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Admitted Patient Care (HES APC)	Identifiable	Non-Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Critical Care (HES Critical Care)	Anonymised - ICO Code Compliant	Non-Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Critical Care (HES Critical Care)	Identifiable	Non-Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Outpatients (HES OP)	Anonymised - ICO Code Compliant	Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Outpatients (HES OP)	Identifiable	Non-Sensitive	One-Off	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)

Files released

Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.

Patient opt-outs were not applied to any of the 148 files released under this agreement, across every version. About opt-outs

Files released against version 4.9 of this agreement, summarised by dataset.

Files released under DARS-NIC-158754-R5T3V-v4.9
Dataset	Files	First released	Last released	Opt-outs applied
Hospital Episode Statistics Accident and Emergency (HES A and E)	12	May 2022	May 2022	No
Hospital Episode Statistics Admitted Patient Care (HES APC)	12	May 2022	May 2022	No
Hospital Episode Statistics Critical Care (HES Critical Care)	12	May 2022	May 2022	No
Hospital Episode Statistics Outpatients (HES OP)	12	May 2022	May 2022	No

Version history

The register lists each renewal of this agreement as a separate row. This site has 4 versions — earlier versions existed before this site's records begin.

DARS-NIC-158754-R5T3V-v4.9 31 October 2021 to 30 October 2024

Title: BRIAN (Brain Tumour Information and Analysis Network) is an online information system that will enable patients to make better-informed decisions about their treatment and accelerate research to find a cure.
Commercial: Yes
Sublicensing: No
Datasets: 12
Files released: 48

Datasets: Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset; Civil Registrations of Death - Secondary Care Cut; Diagnostic Imaging Data Set (DID); HES:Civil Registration (Deaths) bridge; Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP); Hospital Episode Statistics Outpatients (HES OP)

What changed from DARS-NIC-158754-R5T3V-v3.4

Text removed is ~~struck through~~; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-158754-R5T3V-v3.4
Field	Was	Became
Start date	~~2020-12-05~~	2021-10-31
End date	~~2021-12-04~~	2024-10-30
Commercial purposes	No	Yes
Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset: type of data	~~Anonymised - ICO Code Compliant~~	Identifiable
Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset: common law duty of confidentiality	~~Consent (Reasonable Expectation)~~	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Civil Registrations of Death - Secondary Care Cut: common law duty of confidentiality	~~Consent (Reasonable Expectation)~~	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Diagnostic Imaging Data Set (DID): common law duty of confidentiality	~~Consent (Reasonable Expectation)~~	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
HES:Civil Registration (Deaths) bridge: common law duty of confidentiality	~~Consent (Reasonable Expectation)~~	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Accident and Emergency (HES A and E): sensitivity	~~Sensitive~~	Non-Sensitive; Sensitive
Hospital Episode Statistics Accident and Emergency (HES A and E): common law duty of confidentiality	~~Consent (Reasonable Expectation)~~	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Admitted Patient Care (HES APC): sensitivity	~~Sensitive~~	Non-Sensitive; Sensitive
Hospital Episode Statistics Admitted Patient Care (HES APC): common law duty of confidentiality	~~Consent (Reasonable Expectation)~~	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Critical Care (HES Critical Care): common law duty of confidentiality	~~Consent (Reasonable Expectation)~~	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)
Hospital Episode Statistics Outpatients (HES OP): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'; Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 - s261 - 'Other dissemination of information'; Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Outpatients (HES OP): common law duty of confidentiality	~~Consent (Reasonable Expectation)~~	Mixture of confidential data flow(s) with consent and non-confidential data flow(s)

Objective for processing

[1 paragraph unchanged] The aim of this Agreement is to aid The Charity is in to ~~establish~~ establishing a research database, Brain tumouR Information and Analysis Network (BRIAN), which can [16 words unchanged] data to be included in BRIAN and selected from a data dictionary. ~~This agreement does not permit~~ BRIAN currently contains NHS Digital data from the ~~onward sharing of data to any third party.~~ four HES Datasets, the Diagnostic Imaging Dataset and the Civil Registration Deaths. ~~BRIAN will also allow those patients who have consented to access their own identifiable health records and read them in plain text.~~ The population base for the BRIAN database is all adults and children diagnosed with a primary brain tumour in the UK, including those that are now deceased. The Charity will specify this cohort of brain tumour patients using the list of relevant World Health Organization ICD-10 codes. NHS Digital provide pseudonymised extracts of HES, mortality and DIDs data (all linked via common pseudo IDs) for every person in England with hospital episodes since 2008 with specific diagnosis codes indicating a brain tumour. ~~The Brain Tumour Charity have identified several objectives for processing, these are:~~ The Charity has also supplied NHS Digital with a consented cohort of approx. 640 people who have agreed to share their NHS Data with BRIAN. This will allow The Charity to identify the consented individuals and link their HES, DIDS and Civil Registration data to quality of life data already entered into BRIAN. NHS Digital will provide identifiable extracts of HES, mortality and DIDS for a separate group of people who have consented for the Charity to access their health records. 1) To provide The Charity Support Department and Senior Management with information about the brain tumour care pathway not available elsewhere, to inform the services provided and produce anonymised reports to raise public awareness about the impact of brain tumours on quality of life. To facilitate this, BRIAN will be linked with relevant ODS Standard Repository Data freely available from the NHS Digital website, DIDs data, Civil Registration data and data supplied by the patients themselves. The Charity has sought to obtain data from NHS Digital relating to patients treated in England and will then seek to extend coverage to include those treated in Wales, Scotland and Northern Ireland by applying for datasets from the equivalent organisations to NHS Digital in the devolved nations. Geographical coverage across the whole country is essential so that The Charity can compare variations in treatment and outcomes between regions. In order to build a research database that is fit for purpose for researchers The Charity needs to be able to provide long time series of data and so this is the reason for The Charity requesting data back as far as 2008. 2) In addition to informing the services The Charity provides, a series of surveillance reports will be produced, highlighted during the requirements gathering process. These reports will include information related to the time taken to diagnose brain tumours in the various age bands; information on availability of services from region to region; information relating to life expectancy once diagnosis has taken place; frequency of hospital visits; journey time to appointments; variations on the brain tumour pathways from region to region and survival rates derived from the Civil Registration data set and other related information requested by patients. There are several key stakeholders of BRIAN: patients/carers; researchers and The Charity itself. The Brain Tumour Charity have identified several objectives for processing, these are: 3) When the data is stored and linked in BRIAN, researchers will be able to complete an application process to request and justify data items from a data dictionary. Before any data could be shared with researchers The Charity would have to apply for and be granted a sub-licencing agreement from NHS Digital. Any data made available to researchers would be aggregated with small numbers suppressed. The Charity will use BRIAN information to inform and change central policy which has been demonstrated through the introduction of 5-ALA across England after The Charity campaigned and raised awareness of the geographical discrepancies. 5-ALA (known as “The Pink Drink”) is a valuable surgical aid which helps neurosurgeons see and successfully remove more of a tumour during surgery. The Charity plays an active role in association with other organisations such as Cancer 52 who combine the force of many of the rarer cancer charities together to bring about change. The Charity intends to offer support and guidance to other smaller charities wishing to go through the process of acquiring data from NHS Digital. 1) To provide The Charity Support Department and Senior Management with information about the brain tumour care pathway not available elsewhere, to inform the services provided and produce anonymised reports to raise public awareness about the impact of brain tumours on quality of life. To facilitate this, BRIAN will be linked with relevant ODS Standard Repository Data freely available from the NHS Digital website, DIDs data, Civil Registration data and quality of life data supplied by the patients themselves. 4) Access to the Hospital Episode Statistics (HES) datasets (Admitted Patient Care, Outpatient, Accident & Emergency) at a patient level will enable reporting on the experience of brain tumour patients at NHS Hospitals in England, particularly the nature of their referral to secondary care, the healthcare professionals involved in their care and the period of time that episode of care lasted. Data on the period from operation to discharge may provide insights on the outcomes of a particular treatment. 2) In addition to informing the services The Charity provides, a series of surveillance reports will be produced. These reports will include information related to the time taken to diagnose brain tumours in the various age bands; information on availability of services from region to region; information relating to life expectancy once diagnosis has taken place; frequency of hospital visits; journey time to appointments; variations on the brain tumour pathways from region to region and survival rates derived from the Civil Registration data set and other related information requested by patients. ~~5) Civil registration data is key to measuring the optimum treatment pathway and survival rates. Date of death is required to calculate those survival rates.~~ 3) When the data is stored and linked in BRIAN, researchers will be able to complete an application process to request and justify data items from a data dictionary. Any data made available to researchers will be aggregated with small numbers suppressed in line with HES Analysis Guidance. ~~6) DIDs data is required to allow reporting on events that happen in hospital such as scans and enables the type of scan to be identified and also the part of the body that was scanned.~~ The Charity will use BRIAN information to inform and change central policy which has been demonstrated through the introduction of 5-ALA across England after The Charity campaigned and raised awareness of the geographical discrepancies. 5-ALA (known as “The Pink Drink”) is a valuable surgical aid which helps neurosurgeons see and successfully remove more of a tumour during surgery. The impact of this analysis is measured through the monitoring of The Charity strategy and associated Key Performance Indicators which are reviewed and measured regularly. The Charity is towards the end of a five year strategy and can demonstrate that diagnosis time in children has reduced significantly as a direct result of campaigning. Once The Charity has reached the pre-determined targets they are revised to ensure they stay challenging and effective. The Charity ensures the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours. Providing aggregated data with small numbers suppressed or anonymised record level data for research and the publication of surveillance reports will help measure and achieve the overall strategy. 4) Access to the Hospital Episode Statistics (HES) datasets (Admitted Patient Care, Outpatient, Accident & Emergency) at a patient level will enable reporting on the experience of brain tumour patients at NHS Hospitals in England, particularly the nature of their referral to secondary care, the healthcare professionals involved in their care and the period of time that episode of care lasted. Data on the period from operation to discharge may provide insights on the outcomes of a particular treatment. Identifiable patient information is obtained for those 640 individuals who have consented for the Charity to access their health records, pseudonymised data is obtained for all those who have received a diagnosis of a brain tumour based on a list of relevant ICD-10 codes. The population base for the BRIAN database is all adults and children diagnosed with a primary brain tumour in the UK, including those that are now deceased. The Charity will specify this cohort of brain tumour patients using the list of relevant World Health Organization ICD-10 codes. Initially The Charity is seeking to obtain data from NHS Digital relating to patients treated in England and will then seek to extend coverage to include those treated in Wales, Scotland and Northern Ireland by applying for datasets from the equivalent organisations to NHS Digital in the devolved nations. Geographical coverage across the whole country is essential so that The Charity can compare variations in treatment and outcomes between regions. In order to build a research database that is fit for purpose for researchers The Charity needs to be able to provide long time series of data and so this is the reason for The Charity requesting data back as far as 2008. The data that The Charity is seeking to obtain through this application is pseudonymised data but NHS Digital will identify for The Charity which records correspond to our consented cohort. 5) Civil registration mortality data is key to measuring the optimum treatment pathway and survival rates. Date of death is required to calculate those survival rates. Pseudonymised data is obtained for all those who have received a diagnosis of a brain tumour. The Charity has worked closely with NHS Digital to understand more about the HES datasets in order to minimise the data fields that it has selected in our application. The Charity has also spent a significant amount of time studying the HES data dictionaries and has sent three members of staff on the University of York course “Analysing Patient-Level Data using Hospital Episode Statistics (HES)”. 6) DIDs data is required to allow reporting on events that happen in hospital such as scans and enables the type of scan to be identified and also the part of the body that was scanned. Pseudonymised data is obtained for all those who have received a diagnosis of a brain tumour. ~~The Brain Tumour Charity is the Sole Data Controller. The Brain Tumour Charity and Microsoft Ltd are joint Data Processors.~~ BRIAN will also allow those patients who have consented to access their own identifiable health records and read them in plain text. Providing unique information derived from linking quality of life data entered by patients with HES/DID and Civil Registration allows them to improve the management of their situation. This will be achieved by providing them with aggregated information about their situation in one place. The smart combining of data takes place in the back-end database which allows the creation of anonymised reports. Microsoft Ltd supply Cloud Services for The Brain Tumour Charity and are therefore listed as a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement The Charity will produce reports to raise public awareness of the devastating impact of brain tumours. Some of these reports will be produced with the analytical assistance of Costello Medical1. Aggregated reports will highlight issues which will include:- · Data about the experience of brain tumour patients in the diagnosis of their condition - how and where diagnosis happened and at what stage of tumour growth – will help to inform understanding of the adult diagnostic pathway and how that affected their prognosis and inform patient choice. · Understanding the factors behind late diagnosis of brain tumours to help researchers and clinicians to develop referral pathways that will reduce avoidable deaths and life-long disabilities. · By learning from patients who are living with a brain tumour, people who are currently affected can understand more about the impact of different treatments and management options for a particular grade of tumour. · By linking quality of life data received directly from patients to HES data, The Charity can look at new insights into the impact of prescribed and non-prescribed treatments on quality of life. · By linking Civil Registration data to HES, data analysts can do meaningful analysis on survival rates rather than be limited to just those people who pass away in hospital. · Ability to differentiate the type of scans a patient undertakes and the use of contrasts in the scanning procedure. This will to inform us of the different use of scans from region to region. · Researchers and clinicians can use this data to inform clinical practice to improve the existing pathway for brain tumour patients and the standard of care available in the NHS The quality-of-life patient data is derived from patients/carers who have consented for The Charity to access their health records. The Charity has produced a series of Patient Information Sheets (PIS) and Consent Forms (CFs) to facilitate this consent process to ensure there are no surprises about what the data will be used for in the future and various opt out options including opting out from BRIAN and/or opting out of their data being used for specific research project. The PIS and CFs are reviewed regularly and provide the ability for patients to progress from children to adults. The impact of this analysis is measured through the monitoring of The Charity strategy and associated Key Performance Indicators which are reviewed and measured regularly. The Charity is towards the end of a five-year strategy and can demonstrate that diagnosis time in children has reduced significantly as a direct result of campaigning. Once The Charity has reached the pre-determined KPI targets they are revised to ensure they stay challenging and effective. The Charity ensures the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours. The Charity has worked closely with NHS Digital to understand more about the HES datasets in order to minimise the data fields that it has selected. The Charity has also spent a significant amount of time studying the HES data dictionaries and has sent three members of staff on the University of York course “Analysing Patient-Level Data using Hospital Episode Statistics (HES)”. The Brain Tumour Charity is the Sole Data Controller. The Costello Medical and Microsoft Ltd are Data Processors. Costello Medical will assist The Charity with data analyses, and the creation of anonymised reports to be published on BRIAN. Costello Medical will work on specific projects for The Charity, the nature of which are yet to be determined, nevertheless all future projects will: - Provide the Charity Support Department and Senior Management with information about brain tumour care pathways that is not available elsewhere. - Produce anonymised reports to raise public awareness of Brain Tumours, and their impact on Quality of Life - Produce Surveillance Reports As such it has been determined that this work falls within the overarching purpose of this Agreement. Costello Medical will not make decisions regarding how NHS Digital data will be processed and will only be working under the direction of The Brain Tumour Charity. Due to a lack of funds, it is not possible for the Charity to carry out all analyses in-house as such some of the analyses have been outsourced to Costello Medical, who have offered to carry out this work pro bono. Costello Medical is a commercial organisation that provides a variety of services to the healthcare sector; however, this work is being carried out on a pro bono basis. The work carried out by Costello Medical may grant them additional exposure within the healthcare and/or charity sector(s), but the overall benefit to the provision of health and social care in England is far greater than any potential benefit to Costello Medical. Microsoft Ltd supply Cloud Services for The Brain Tumour Charity and are therefore a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement [3 paragraphs unchanged]

Processing activities

The quality of life patient data is derived from patients/carers who have consented for The Charity to access their health records. The Charity has produced a series of Patient Information Sheets (PIS) and Consent Forms (CFs) to facilitate this consent process to ensure there are no surprises about what the data will be used for in the future and various opt out options including opting out from BRIAN and/or opting out of their data being used for specific research project. The PIS and CFs are reviewed regularly and provide the ability for patients to progress from children to adults. It is proposed that all patients will be manually re-consented at the age of 16. At the point the data is uploaded to BRIAN any identifiable elements are stripped out (name, address, email address, NHS number) and sent to a system which is kept completely separate from BRIAN. This is for security purposes and prevents any re-identifiable possibilities. Each person consenting to BRIAN is allocated a consent status to differentiate their role and level of access to the data. There are three portals which are designed for each user and they are Patient, Research and Analyst. Each person consenting to use BRIAN has their NHS number (or identity) validated. Once the cohort of identifiable data is received, from national data sources it will be mapped and loaded into a relational data schema (BRIAN) alongside SNOMED, NICIP Codes and Quality of Life Data. It will then be mapped to 'master' and 'reference' data sourced from the NHS Digital ODS/TRUD sites so that the HES record will have meaning and be research ready by the addition of this intelligence. All individuals with access to the raw data are either substantive employees of The Brain Tumour Charity or its contractor. NHS Digital will identify the pseudonymised cohort from HES based on the ICD-10 diagnosis codes supplied by The Charity and construct a pseudo dataset that contains all the episodes for patients identified. NHS Digital will identify the pseudo cohort from HES based on the ICD-10 diagnosis codes supplied by The Charity and construct a pseudo dataset that contains all the episodes for patients identified in the pseudo cohort. In tandem The Charity will send NHS Digital the following details for ~~each individual~~ everyone in the ~~consent~~ consented cohort: a BRIAN ID ~~(i.e.~~ (i.e., a study ID), an NHS Number, the date of birth, forename, surname and gender. NHS Digital will endeavour to map each individual in the ~~consent~~ consented cohort to an individual in the pseudo cohort. For each individual that [23 words unchanged] as appending entries for the identifiable fields that The Charity has requested. The Charity will produce reports and insights needed to support its strategic objectives. The types of reports expected to be produced are listed in the outputs section. Outputs produced by the applicant will be aggregated data with small numbers suppressed in line with the HES Analysis Guide. At the point the data is uploaded to BRIAN any identifiable elements have been stripped out (name, address, email address, NHS number) and sent to a system which is kept completely separate from BRIAN. This is for security purposes and mitigates any risk of re-identifiability. . There are three portals which are designed for each user and they are Patient, Research and Analyst. Each person consenting to use BRIAN is allocated a consent status to differentiate their role and level of access to the data and has their NHS number (or identity) validated. The data from NHS Digital will not be used for any purpose other than that outlined in this Agreement. There will be no attempt to re-identify individuals in the dataset from NHS Digital except in the case of those that are in the consent cohort. In the case of the consent cohort, The Charity will provide NHS Digital with the list of consented patients so that NHS Digital is able to identify them within the pseudonymised cohort for The Charity. Once the cohort of identifiable data is received, from national data sources it will be mapped and loaded into a relational data schema (BRIAN) alongside SNOMED, NICIP Codes and Quality of Life Data. It will then be mapped to 'master' and 'reference' data sourced from the NHS Digital ODS/TRUD sites so that the HES record will have meaning and be research ready by the addition of this intelligence. Policy for use and release of the data – Access to BRIAN data, whether requested by Charity staff, patients, carers, researchers, clinicians, or healthcare managers, will be controlled by the Data Access Board. This Board will include academics, clinicians and The Charity's data governance lead and Caldicott Guardian. Access to BRIAN will be permitted where the requester can justify the need in terms of better outcomes for current or future patients. The requester will also need to show that they have appropriate training and work in a sufficiently secure environment given the sensitivity of the data they will be accessing. For each request the access will be limited to the minimum required to meet the agreed objectives. The Charity will produce reports and insights needed to support its strategic objectives. The types of reports expected to be produced are listed in the outputs section. Outputs produced by the Charity will be aggregated data with small numbers suppressed in line with the HES Analysis Guide. There has been little progression towards finding a cure for brain tumours in the last 20 years and any improvements have been marginal. It is important to capture any changes in this trend and in order to do this there is a need to have historical data. The Charity will be producing a number of surveillance/audit reports, in order to follow and report on the patient pathway. A minimum of 10 years data is required in order to carry out robust and reliable analysis to feed into the surveillance reports. BRIAN needs a rich enough source of data for individual research to be undertaken. The number of data years requested is proportionate to the level of analysis The Charity intends to carry out. This will enable appropriate results to be disseminated to achieve the maximum impact on the investigation into the 10 year survival rate. Policy for use and release of the data – Access to BRIAN data, whether requested by Charity staff, patients, carers, researchers, clinicians, or healthcare managers, will be controlled by the Data Access Board. This Board will include academics, clinicians and The Charity's data governance lead and Caldicott Guardian. Access to BRIAN will be permitted where the requester can justify the need in terms of better outcomes for current or future patients. The requester will also need to show that they have appropriate training and work in a sufficiently secure environment given the sensitivity of the data they will be accessing. For each request the access will be limited to the minimum required to meet the agreed objectives. The Charity will not share, or give individuals from third parties access to any NHS Digital data with the exception of aggregated outputs with small numbers supressed. [2 paragraphs unchanged] NHS Digital Security approved The Charity storing data in the Microsoft Azure cloud in February 2019 and this was formally signed off in the DSA that The Charity signed in August 2019. Microsoft Ltd is named as a data processor in this agreement. Within The Charity only substantive employees of The Charity or its contractor have access to the data. Security and storage are increased in line with The Charity's requirements. Microsoft Azure allows for flexibility in storage requirements should they expand or contract. Microsoft Azure has all relevant accreditation required for safe storage. The Charity are currently in the process of recruiting for their new data science team, it is expected that all those recruited will be substantive employees of The Charity or contractors. However, should any individuals be employed under honorary contracts The Charity will not grant such individuals access to NHS Digital data until their agreement with NHS Digital has been appropriately amended. ~~NHS Digital will link the HES, DID and CR datasets together for The Charity.~~ Only substantive employees of The Charity or its contractor, who is an individual employed under the same terms and conditions of employment as substantive employees, have access to identifiable NHS Digital data. All individuals with access to record level data are employed by The Brain Tumour Charity or its contractor. All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data). Substantive employees of Costello Medical will be given access to pseudonymised data only, bespoke extracts will be produced for Costello Medical by The Charity on a project-by-project basis containing only the fields necessary for analyses. Costello Medical will access this data via The Charity’s VRE and will only process the data provided by NHS Digital at the locations listed within this DSA. All those with access to the data will receive appropriate training in data protection and confidentiality. The data from NHS Digital will not be used for any purpose other than that outlined in this Agreement. There will be no attempt to re-identify individuals in the pseudonymised dataset. All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data).

Expected output

[23 paragraphs unchanged] The Charity has produced a number of these reports already and made [20 words unchanged] next group of reports will be launched in the patient portal in ~~November 2020.~~ late 2021. More details appear in the Benefits section. ~~Reports will always be aggregated with small numbers suppressed, in line with the HES Analysis Guide.~~ In addition to publishing the surveillance reports in the BRIAN patient portal, [25 words unchanged] a circulation of 20,000 and is distributed to supporters, patients and carers. Any data published will always be aggregated with small numbers suppressed, in line with the HES Analysis Guide. [7 paragraphs unchanged] These events also provide an opportunity to share and promote work to [58 words unchanged] data about the brain tumour pathway with both healthcare professionals and researchers. The Charity also has a dedicated Healthcare Engagement team who regularly visit clinical teams, attend information days and host in-house healthcare professional study days to share best practice and promote recruitment to BRIAN its benefits. These study days have proved to be excellent in facilitating the learning and sharing of best practice across the UK and The Charity plans to be able to share key findings about the patient pathway at future study days to continue to develop clinical services nationally and highlight the key issues faced by brain tumour patients. The Charity also has a dedicated Healthcare Engagement team who regularly visit clinical teams, attend information days and host in-house healthcare professional study days to share best practice and promote recruitment to BRIAN its benefits. These study days have proved to be excellent in facilitating the learning and sharing of best practice across the UK and The Charity plans to be able to share key findings about the patient pathway at future study days to continue to develop clinical services nationally and highlight the key issues faced by brain tumour patients. [1 paragraph unchanged] Costello Medical will aid The Charity in producing aggregated outputs (small numbers supressed in line with HES Analysis) that will be published on BRIAN, as well as non-aggregated outputs that will be presented to The Charity Support Department and Senior Management. Costello Medical will be cited as co-authors of outputs produced where applicable. It is expected that Costello Medical will produce publicly available reports based on the findings of each project, this will be done in conjunction with The Charity. Should any data be contained within these reports it will be aggregated with small numbers supressed in line with HES Analysis Guidance. It is expected that the production of such reports will lead to associated workshops and presentations.

Expected measurable benefits

The Charity ~~is near~~ has just reached the end of a ~~five year~~ five-year strategic plan which ~~runs~~ ran from 2015 to 2020. The plan ~~includes~~ included a number of SMART (Specific, Measurable, Achievable, Relevant, Time-bound) initiatives and enablers. The creation of the research database is was a first step towards delivering on the longer-term objections, with specific initiatives relating to ~~BRIAN being:-~~ BRIAN: [1 paragraph unchanged] Every patient is a research patient - The Charity wants 70% of [11 words unchanged] by making them aware of clinical trials and tools such as BRIAN ~~by 2020~~ to provide intervention as early as possible. BRIAN is helping to improve [14 words unchanged] BRIAN is a more efficient way of matching patients to available trials. [1 paragraph unchanged] These initiatives have been derived following extensive experience gained from working with, [38 words unchanged] Charity believes it has the experience to choose the right initiatives, networks, ~~influence~~ influence, and recognition to affect the necessary change. The Charity currently needs hard [14 words unchanged] treatment pathways, or identify areas of weakness, or that require additional investment. [1 paragraph unchanged] ~~The initial benefits were resulting from the access sought at this time, and therefore from the reports outlined in the outputs sections:~~ Reports will be used by The Charity to develop support services to brain tumour patients who approach The Charity for help. This may include advice on treatment centres of excellence, different treatment pathways, identifying possible clinical trials, and preparing for higher quality 'end of life' care. With the addition of Civil Registration data The Charity can establish survival rates based on location and treatment options to establish any evidence of variation and why some people survive longer than others. For example, continuous chemotherapy treatment has extended the life for GBM patients, but it is not known for how long or for how many people. The Charity's clinical nurse specialists want accurate, evidence-based information that can be shared with newly diagnosed patients. This can reduce the patients' stress after days of internet searches causing exhaustion, confusion and fear that can lead to desperate behaviours such as expensive overseas treatments which may not always be beneficial. Trusted information will be in one place. More research into the types of scans people receive can be derived from DID data which will allow for reporting on the location and type of scans and what impact it has on treatment decisions or survival rates. Reports will be used by The Charity to develop support services to brain tumour patients who approach The Charity for help. This may include advice on treatment centres of excellence, different treatment pathways, identifying possible clinical trials, and preparing for higher quality 'end of life' care. With the addition of Civil Registration data The Charity can establish survival rates based on location and treatment options to establish any evidence of variation and why some people survive longer than others. For example, continuous chemotherapy treatment has extended the life for GBM patients but it is not known for how long or for how many people. The Charity's clinical nurse specialists want accurate, evidence based information that can be can shared with newly diagnosed patients. This can reduce the patients' stress after days of internet searches causing exhaustion, confusion and fear that can lead to desperate behaviours such as expensive overseas treatments which may not always be beneficial. Trusted information will be in one place. More research into the types of scans people receive can be derived from DID data which will allow for reporting on the location and type of scans and what impact it has on treatment decisions or survival rates. [1 paragraph unchanged] Researchers and clinicians will benefit by being able to apply for specific pseudonymised research data sets to try and find improvements to the lives of those currently affected by brain cancer and those that will be diagnosed in the future. Clinicians will be able to benchmark performance outcomes across different hospitals to justify further resources i.e. 'in theatre' MRI scanning equipment is available in each hospital and cost justifications are difficult. This latest dissemination will provide The Charity with access to the Civil Registration and Diagnostic Imaging Datasets. Civil registration will provide the Charity with data on all those that have died of a brain tumour, not just those that have died in hospital. As a result, it will enable The Charity to calculate survival rates for all brain tumour patients. Access to the DID dataset will provide The Charity with a more comprehensive view of the patient pathway for brain tumour patients. The analyses to be carried out by Costello Medical, and the subsequent production of publicly available reports, will enable The Charity to identify areas where the care and treatment of Brain Tumour patients is currently sub-optimal. The Charity intend to make evidence-based suggestions on how current care pathways can be bettered. It is expected that this will lead to change in NHS policy, and improved patient outcomes. The work carried out by Costello Medical may grant them additional exposure within the healthcare and/or charity sector(s), but the overall benefit to the provision of health and social care in England is far greater than any potential benefit to Costello Medical. Going forward, the charity want to be able to continue sharing these existing visual reports through the BRIAN patient portal, as well as developing further reports, in order to increase the usefulness of the information that the charity share with brain tumour patients.

Benefits reported

~~The initial benefit from receiving the data was the upskilling of~~ It has taken time for The Charity BRIAN ~~team, allowing~~ team analysts to understand the characteristics and limitations of the data in order [18 words unchanged] full understanding of the data set once the actual data was received ~~(no synthetic data is available~~ from NHS ~~Digital).~~ Digital. Analysts were able to look at the content and completeness of the data to derive the processing, mapping and error management rules which are critical to the project. [1 paragraph unchanged] Going forward, the charity want to be able to continue sharing these existing visual reports through the BRIAN patient portal, as well as developing further reports, in order to increase the usefulness of the information that the charity share with brain tumour patients.

DARS-NIC-158754-R5T3V-v3.4 5 December 2020 to 4 December 2021

Title: BRIAN (Brain Tumour Information and Analysis Network) is an online information system that will enable patients to make better-informed decisions about their treatment and accelerate research to find a cure.
Commercial: No
Sublicensing: No
Datasets: 13
Files released: 0

What changed from DARS-NIC-158754-R5T3V-v2.6

Text removed is ~~struck through~~; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-158754-R5T3V-v2.6
Field	Was	Became
Start date	~~2019-12-05~~	2020-12-05
End date	~~2020-12-04~~	2021-12-04
Civil Registrations of Death - Secondary Care Cut: legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii)~~	Health and Social Care Act 2012 - s261 - 'Other dissemination of information'
Diagnostic Imaging Data Set (DID): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii)~~	Health and Social Care Act 2012 - s261 - 'Other dissemination of information'
Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 - s261 - 'Other dissemination of information'; Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 - s261 - 'Other dissemination of information'; Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Admitted Patient Care (HES APC): sensitivity	~~Non-Sensitive; Sensitive~~	Sensitive
Hospital Episode Statistics Critical Care (HES Critical Care): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 - s261 - 'Other dissemination of information'; Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Outpatients (HES OP): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 - s261 - 'Other dissemination of information'; Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)

Objective for processing

~~BACKGROUND~~ Brain tumours are the biggest cancer killer of children and adults under 40. Over 100,000 people are currently living with a brain tumour in the UK and most are coping with a reduced quality of life. Whilst survival has doubled across all cancers, ten-year survival rates for brain tumours have improved little for adults in over 40 years and in that time the number of brain tumour diagnoses has doubled. Within the same time frame the proportion of people who survived for ten years after leukaemia diagnosis has increased more than six -fold. Survival rates for brain tumour patients remain amongst the poorest of all cancers. The Brain Tumour Charity (The Charity) has a strategy to double survival and halve the harm that brain tumours have on quality of life. One of the ways The Charity strives to achieve this strategy is by funding research. The Charity has committed over £50 million to date on pioneering projects that will help adults and children with brain tumours. The Charity funds research through a competitive, fair and transparent process of best practice called peer review to ensure only the very best research is selected that will have a real impact on those affected by brain tumours. Brain tumours are the biggest cancer killer of children and adults under 40. Over 100,000 people are currently living with a brain tumour in the UK and most are coping with a reduced quality of life. Whilst survival has doubled across all cancers, ten year survival rates for brain tumours have improved little for adults in over 40 years and in that time the number of brain tumour diagnoses has doubled. In the same time frame the proportion of people who survived for ten years after leukaemia diagnosis has increased more than six fold. Survival rates for brain tumour patients remain amongst the poorest of all cancers. The Brain Tumour Charity (The Charity) has a strategy to double survival and halve the harm that brain tumours have on quality of life. One of the ways The Charity strives to achieve this strategy is by funding research. The Charity has committed over £50 million to date on pioneering projects that will help adults and children with brain tumours. The Charity funds research through a competitive, fair and transparent process of best practice called peer review to ensure only the very best research is selected that will have a real impact on those affected by brain tumours. The aim of The Charity is to establish a research database, Brain tumouR Information and Analysis Network (BRIAN), which can be used to facilitate research projects from third parties with suitable permissions and to enable cohort data to be included in BRIAN and selected from a data dictionary. This agreement does not permit the onward sharing of data to any third party. The aim of The Charity is to establish a research database, BRIAN, which can be used to facilitate research projects from third parties with suitable permissions and to enable cohort data to be included in BRIAN and selected from a data dictionary. This agreement does not permit the onward sharing of data to any third party. The Charity intends to apply for a sub-licence agreement in the future. [1 paragraph unchanged] ~~OBJECTIVES FOR PROCESSING~~ The Brain Tumour Charity have identified several objectives for processing, these are: [7 paragraphs unchanged] ~~COHORT AND DATA FIELD SELECTION~~ [2 paragraphs unchanged] ~~DATA CONTROLLER/PROCESSORS~~ [1 paragraph unchanged] ~~LEGAL BASIS~~ Microsoft Ltd supply Cloud Services for The Brain Tumour Charity and are therefore listed as a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement The lawful basis for this processing is: [2 paragraphs unchanged]

Processing activities

The quality of life patient data is derived from patients/carers who have [83 words unchanged] from children to adults. It is proposed that all patients will be manually re-consented at the age of 16. ~~The Brain Tumour Charity have designed the process for handling the re-consent of children when they reach 16 but still need to decide how to integrate this with the registration process.~~ At the point the data is uploaded to BRIAN any identifiable elements [156 words unchanged] raw data are either substantive employees of The Brain Tumour Charity or of its ~~industry partner.~~ contractor. [7 paragraphs unchanged] NHS Digital Security approved The Charity storing data in the Microsoft Azure [30 words unchanged] agreement. Within The Charity only substantive employees of The Charity or its ~~industry partner~~ contractor have access to the data. Security and storage are increased in line [15 words unchanged] or contract. Microsoft Azure has all relevant accreditation required for safe storage. [1 paragraph unchanged] All individuals with access to record level data are employed by The Brain Tumour Charity or its contractor. All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data).

Expected output

[8 paragraphs unchanged] • Country/Regional brain tumour statistics (type, volume and ~~region).~~ region) (HES). [1 paragraph unchanged] • Information about different brain tumour patient ~~pathways.~~ pathways (HES). [1 paragraph unchanged] ~~• Anonymised bespoke data extracts for research purposes (stored in BRIAN).~~ • Brain tumour comorbidities (HES). • Number of brain tumour surgeries carried out per hospital (HES). [1 paragraph unchanged] ~~• Palliative care trends and options.~~ • Causes of death (Civil Registration data). • Types of scans being undertaken ~~(DIDs).~~ (DID). • Location of scanning ~~(DIDs).~~ (DID). The Brain Tumour Charity would expect to begin producing reports within four to five months of receiving the records from NHS Digital in January 2020 and the first extracts for use by researchers by September 2020, subject to a sub-licencing agreement being in place with NHS Digital (this would be the subject of a future data application). • Waiting times between an imaging (e.g. MRI) request, a test and a result (DID). Reports will always be aggregated with small numbers suppressed, in line with the HES Analysis Guide. The surveillance reports will be published in a multi-layered approach through BRIAN. The Charity will also include findings in our annual report and other Charity publications such as its quarterly newsletter. This newsletter, called The Grey Matters, has a circulation of 20,000 and it is distributed to supporters, patients and carers. • For each brain tumour related imaging procedure type, the total number of procedures conducted each month (DID). • For each brain tumour related imaging procedure type, the percentage of tests which returned same-day test results each month (DID) • For each brain tumour related imaging procedure type, the breakdown of referral methods (DID). • Anonymised bespoke data extracts for research purposes (stored in BRIAN) The Charity has produced a number of these reports already and made them available to brain tumour patients through the BRIAN patient portal (a web-app) that was launched in September 2019. The next group of reports will be launched in the patient portal in November 2020. More details appear in the Benefits section. Reports will always be aggregated with small numbers suppressed, in line with the HES Analysis Guide. In addition to publishing the surveillance reports in the BRIAN patient portal, The Charity will include findings in our annual report and other Charity publications such as its quarterly newsletter. This newsletter, called The Grey Matters, has a circulation of 20,000 and is distributed to supporters, patients and carers. [9 paragraphs unchanged]

Expected measurable benefits

[1 paragraph unchanged] A cure can't wait - having access to ~~HES/DIDs/Civil~~ HES/DID/Civil Registration and other data will help The Charity identify the most promising [71 words unchanged] conferences and seminars and influencing politicians and senior healthcare professionals and managers. Every patient is a research patient - The Charity wants 70% of [20 words unchanged] such as BRIAN by 2020 to provide intervention as early as possible. ~~Over~~ BRIAN is helping to improve the ~~next two years BRIAN will improve~~ recruitment rate of brain tumour patients from ~~the current~~ a low ~~figures~~ of less than 10%. BRIAN ~~will be~~ is a more efficient way of matching patients to available trials. Early intervention to reduce diagnosis time - The Charity has a campaign [93 words unchanged] launching a campaign to reduce diagnosis time for adults and halve it. Improving quality of care pathways and day-to-day life - over 90% of beneficiaries responding to a survey distributed to those people affected by brain tumours and supported by The Charity stated that The Charity makes a meaningful difference to their life. This is now a strategic KPI on The Charity's balanced scorecard with an improvement target. The Charity will produce surveillance reports and raise public awareness of brain tumours, and publish them via the BRIAN patient portal, website, forums, conferences, and media channels such as newspapers, television and radio. The Charity is committed to raise the awareness of brain tumours and their devastating impact on patients and their families in order to drive improvements to treatment and care pathways. The Charity also plans to support patients in managing their quality of care by offering information and self-management tools through the BRIAN patient interface. This reduces weeks of internet searches and a confusing array of information for patients and carers when time may be short or better spent with loved ones. The timescales will be within months of receiving HES data. Improving quality of care pathways and day-to-day life - over 90% of beneficiaries responding to a survey distributed to those people affected by brain tumours and supported by The Charity stated that The Charity makes a meaningful difference to their life. This is now a strategic KPI on The Charity’s balanced scorecard with an improvement target. The Charity will produce surveillance reports and raise public awareness of brain tumours, and publish them via the website, forums, conferences, and media channels such as newspapers, television and radio. The Charity is committed to raise the awareness of brain tumours and their devastating impact on patients and their families in order to drive improvements to treatment and care pathways. The Charity also plans to support patients in managing their quality of care by offering information and self-management tools through the BRIAN patient interface. This reduces weeks of internet searches and a confusing array of information for patients and carers when time may be short or better spent with loved ones. The timescales will be within months of receiving HES data. [3 paragraphs unchanged] Reports will be used by The Charity to develop support services to [152 words unchanged] research into the types of scans people receive can be derived from ~~DIDs~~ DID data which will allow for reporting on the location and type of scans and what impact it has on treatment decisions or survival rates. [1 paragraph unchanged] Researchers and clinicians will benefit by being able to apply for specific [47 words unchanged] scanning equipment is available in each hospital and cost justifications are difficult. This latest dissemination will provide The Charity with access to the Civil Registration and Diagnostic Imaging Datasets. Civil registration will provide the Charity with data on all those that have died of a brain tumour, not just those that have died in hospital. As a result, it will enable The Charity to calculate survival rates for all brain tumour patients. Access to the DID dataset will provide The Charity with a more comprehensive view of the patient pathway for brain tumour patients. This latest dissemination will provide The Charity with access to the Civil Registration and Diagnostic Imaging Datasets. Civil registration will provide the Charity with data on all those that have died of a brain tumour, not just those that have died in hospital. As a result, it will enable The Charity to calculate survival rates for all brain tumour patients. Access to the DID dataset will provide The Charity with a more comprehensive view of the patient pathway for brain tumour patients.

Benefits reported

The ~~key~~ initial benefit ~~to date is~~ from receiving the data was the upskilling of The Charity BRIAN team, allowing analysts to ~~fully~~ understand the characteristics and limitations of the data in order to use it appropriately for reporting. It [20 words unchanged] data was received (no synthetic data is available from NHS Digital). Analysts ~~have been looking~~ were able to look at the content and completeness of the data to derive the processing, mapping and error management rules which are critical to the ~~project which also includes reference data.~~ project. Data insight analysts in the team have now begun to produce analysis and graphical reports from the original pseudonymised data dissemination from NHSD. The Charity anticipates sharing some of the reports - which show aggregated data - when The Charity launches its patient portal for brain tumour patients towards the end of 2019. Data insights available may include, but are not limited to, analysis of comorbidities, length of hospital stays, frequency of treatments and distance travelled for treatment. Insights of this nature will allow patients to make more informed decisions about their treatment and care but will also highlight areas of excellence in service provision. Data insight analysts in the team have produced visual reports from the pseudonymised data disseminations from NHSD. These reports show aggregated data. The first 3 reports from NHSD data were published in the BRIAN patient portal (a web-app) for brain tumour patients in September 2019. These data insights showed analysis of brain tumour comorbidities, incidences of brain tumours on a map and the number of brain tumour surgeries carried out by each hospital. A further 5 visual reports are due to be published in the BRIAN patient portal in November 2020, using data from the DID and civil registration datasets. These will report on (i) the most frequently cited causes of death amongst brain tumour patients, (ii) the average waiting times between an imaging (e.g. MRI) request, a test and a result, (iii) for each brain tumour related imaging procedure type, the total number of procedures conducted each month, (iv) for each brain tumour related imaging procedure type, the percentage of tests which returned same-day test results each month and (v) for each brain tumour related imaging procedure type, the breakdown of referral methods. Insights of this nature help inform patients about their condition and allow them to make more informed decisions about their treatment and care, as well as helping to highlight areas of excellence in service provision. Brain tumour patients can filter these visualisations by relevant criteria such as tumour behaviour, age group and sex to ensure they receive data relevant to their own personal circumstances. Database analysts in the team have managed to identify the fields within the datasets that would satisfy these reporting requirements. They are now working to craft bespoke queries to provide the data needed in the format required to visualise these data insights. Individuals will be able to filter these visualisations by tumour types (by ICD-10 code), tumour grade and age group to ensure they receive data reflective of their personal experience. Going forward, the charity want to be able to continue sharing these existing visual reports through the BRIAN patient portal, as well as developing further reports, in order to increase the usefulness of the information that the charity share with brain tumour patients. Initial analysis has been completed on brain cancer survival rates (for high grade tumours) showing the difference between those hospitals following a patient centric model and those that are not. The model was devised in Addenbrooks Hospital and processes were revised to put patients at the heart of the brain tumour pathway. Every patient receives an individual treatment pathway based on the results of a review by a multi-disciplinary team and continuous monitoring by dedicated brain tumour healthcare professionals. It is not known what impact this approach has had on those living with brain tumours and if survival rates are longer. This has highlighted further information that is required to undertake such an analysis.

Objective for processing

The aim of The Charity is to establish a research database, Brain tumouR Information and Analysis Network (BRIAN), which can be used to facilitate research projects from third parties with suitable permissions and to enable cohort data to be included in BRIAN and selected from a data dictionary. This agreement does not permit the onward sharing of data to any third party.

BRIAN will also allow those patients who have consented to access their own identifiable health records and read them in plain text.

The Brain Tumour Charity have identified several objectives for processing, these are:

2) In addition to informing the services The Charity provides, a series of surveillance reports will be produced, highlighted during the requirements gathering process. These reports will include information related to the time taken to diagnose brain tumours in the various age bands; information on availability of services from region to region; information relating to life expectancy once diagnosis has taken place; frequency of hospital visits; journey time to appointments; variations on the brain tumour pathways from region to region and survival rates derived from the Civil Registration data set and other related information requested by patients.

3) When the data is stored and linked in BRIAN, researchers will be able to complete an application process to request and justify data items from a data dictionary. Before any data could be shared with researchers The Charity would have to apply for and be granted a sub-licencing agreement from NHS Digital. Any data made available to researchers would be aggregated with small numbers suppressed. The Charity will use BRIAN information to inform and change central policy which has been demonstrated through the introduction of 5-ALA across England after The Charity campaigned and raised awareness of the geographical discrepancies. 5-ALA (known as “The Pink Drink”) is a valuable surgical aid which helps neurosurgeons see and successfully remove more of a tumour during surgery. The Charity plays an active role in association with other organisations such as Cancer 52 who combine the force of many of the rarer cancer charities together to bring about change. The Charity intends to offer support and guidance to other smaller charities wishing to go through the process of acquiring data from NHS Digital.

5) Civil registration data is key to measuring the optimum treatment pathway and survival rates. Date of death is required to calculate those survival rates.

6) DIDs data is required to allow reporting on events that happen in hospital such as scans and enables the type of scan to be identified and also the part of the body that was scanned.

The impact of this analysis is measured through the monitoring of The Charity strategy and associated Key Performance Indicators which are reviewed and measured regularly. The Charity is towards the end of a five year strategy and can demonstrate that diagnosis time in children has reduced significantly as a direct result of campaigning. Once The Charity has reached the pre-determined targets they are revised to ensure they stay challenging and effective. The Charity ensures the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours. Providing aggregated data with small numbers suppressed or anonymised record level data for research and the publication of surveillance reports will help measure and achieve the overall strategy.

The population base for the BRIAN database is all adults and children diagnosed with a primary brain tumour in the UK, including those that are now deceased. The Charity will specify this cohort of brain tumour patients using the list of relevant World Health Organization ICD-10 codes. Initially The Charity is seeking to obtain data from NHS Digital relating to patients treated in England and will then seek to extend coverage to include those treated in Wales, Scotland and Northern Ireland by applying for datasets from the equivalent organisations to NHS Digital in the devolved nations. Geographical coverage across the whole country is essential so that The Charity can compare variations in treatment and outcomes between regions. In order to build a research database that is fit for purpose for researchers The Charity needs to be able to provide long time series of data and so this is the reason for The Charity requesting data back as far as 2008. The data that The Charity is seeking to obtain through this application is pseudonymised data but NHS Digital will identify for The Charity which records correspond to our consented cohort.

The Charity has worked closely with NHS Digital to understand more about the HES datasets in order to minimise the data fields that it has selected in our application. The Charity has also spent a significant amount of time studying the HES data dictionaries and has sent three members of staff on the University of York course “Analysing Patient-Level Data using Hospital Episode Statistics (HES)”.

The Brain Tumour Charity is the Sole Data Controller. The Brain Tumour Charity and Microsoft Ltd are joint Data Processors.

Microsoft Ltd supply Cloud Services for The Brain Tumour Charity and are therefore listed as a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement

The lawful basis for this processing is:

Expected output

The Charity will use pseudonymised HES, DID and Civil Registration data to create surveillance reports of the type listed below and data extracts specifically designed for research purposes:

• Demographics of people living with a brain tumour to highlight any regional variations and investigate why.

• Age at time of diagnosis to see whether that is changing over time and see if HES data can explain why.

• Time taken to receive first course of treatment and the variations that occur.

• Time taken to tumour recurrence and life expectancy after diagnosis and associated variations.

• State of tumour and changes that occur as a result of a procedure or treatment.

• Impact of different brain tumour treatments.

• Country/Regional brain tumour statistics (type, volume and region) (HES).

• Regional comparisons of treatment and care pathways and service provision.

• Information about different brain tumour patient pathways (HES).

• Adherence to NICE guidelines.

• Brain tumour comorbidities (HES).

• Number of brain tumour surgeries carried out per hospital (HES).

• Survival trends and rates (Civil Registration data).

• Causes of death (Civil Registration data).

• Types of scans being undertaken (DID).

• Location of scanning (DID).

• Waiting times between an imaging (e.g. MRI) request, a test and a result (DID).

• For each brain tumour related imaging procedure type, the total number of procedures conducted each month (DID).

• For each brain tumour related imaging procedure type, the percentage of tests which returned same-day test results each month (DID)

• For each brain tumour related imaging procedure type, the breakdown of referral methods (DID).

• Anonymised bespoke data extracts for research purposes (stored in BRIAN)

The Charity has produced a number of these reports already and made them available to brain tumour patients through the BRIAN patient portal (a web-app) that was launched in September 2019. The next group of reports will be launched in the patient portal in November 2020. More details appear in the Benefits section. Reports will always be aggregated with small numbers suppressed, in line with the HES Analysis Guide. In addition to publishing the surveillance reports in the BRIAN patient portal, The Charity will include findings in our annual report and other Charity publications such as its quarterly newsletter. This newsletter, called The Grey Matters, has a circulation of 20,000 and is distributed to supporters, patients and carers.

• International Symposium on Pediatric Neuro-Oncology (ISPNO)

• British Neuro-Oncology Society (BNOS)

• Society of British Neurosurgical Surgeons (SBNS) & Association of British Neurologists (ABN)

• Society of NeuroOncology (SNO)

These events also provide an opportunity to share and promote work to some of the most internationally renowned professionals in the brain tumour field in the belief they will collaborate with each other to increase research opportunities and pool resources to apply for funding for brain tumour research projects. As such, The Charity will use these conferences as a platform to share any insights that can be generated from patient data about the brain tumour pathway with both healthcare professionals and researchers. The Charity also has a dedicated Healthcare Engagement team who regularly visit clinical teams, attend information days and host in-house healthcare professional study days to share best practice and promote recruitment to BRIAN its benefits. These study days have proved to be excellent in facilitating the learning and sharing of best practice across the UK and The Charity plans to be able to share key findings about the patient pathway at future study days to continue to develop clinical services nationally and highlight the key issues faced by brain tumour patients.

Benefits reported

The initial benefit from receiving the data was the upskilling of The Charity BRIAN team, allowing analysts to understand the characteristics and limitations of the data in order to use it appropriately for reporting. It was only possible for The Charity to start to develop a full understanding of the data set once the actual data was received (no synthetic data is available from NHS Digital). Analysts were able to look at the content and completeness of the data to derive the processing, mapping and error management rules which are critical to the project.

DARS-NIC-158754-R5T3V-v2.6 5 December 2019 to 4 December 2020

Title: BRIAN (Brain Tumour Information and Analysis Network) is an online information system that will enable patients to make better-informed decisions about their treatment and accelerate research to find a cure.
Commercial: No
Sublicensing: No
Datasets: 16
Files released: 100

Datasets: Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset; Civil Registrations of Death - Secondary Care Cut; Diagnostic Imaging Data Set (DID); HES:Civil Registration (Deaths) bridge; Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP); Hospital Episode Statistics Outpatients (HES OP); Hospital Episode Statistics Outpatients (HES OP)

What changed from DARS-NIC-158754-R5T3V-v1.10

Text removed is ~~struck through~~; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-158754-R5T3V-v1.10
Field	Was	Became
Start date	~~2019-03-14~~	2019-12-05
End date	~~2020-03-13~~	2020-12-04
Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset: type of data	~~Identifiable~~	Anonymised - ICO Code Compliant
Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Accident and Emergency (HES A and E): sensitivity	~~Non-Sensitive; Sensitive~~	Sensitive
Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Critical Care (HES Critical Care): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Outpatients (HES OP): legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)~~	Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(2)(c)

Objective for processing

[1 paragraph unchanged] Brain tumours are the biggest cancer killer of children and adults under [87 words unchanged] patients remain amongst the poorest of all cancers. The Brain Tumour Charity ~~(TBTC)~~ (The Charity) has a strategy to double survival and halve the harm that brain tumours have on quality of life. One of the ways ~~TBTC~~ The Charity strives to achieve this strategy is by funding research. ~~TBTC~~ The Charity has committed over ~~£35.6~~ £50 million to date on pioneering projects that will help adults and children with brain tumours. ~~TBTC~~ The Charity funds research through a competitive, fair and transparent process of best practice called peer review to ensure only the very best research is ~~selected,~~ selected that will have a real impact on those affected by brain tumours. The aim of ~~the TBTC~~ The Charity is to establish a research database, BRIAN, which can be used to [27 words unchanged] does not permit the onward sharing of data to any third party. ~~TBTC intend~~ The Charity intends to apply for a sub-licence agreement in the future. [1 paragraph unchanged] 1) To provide the TBTC Support Department and Senior Management with information about the brain tumour care pathway not available elsewhere, to inform the services provided and produce anonymised reports to raise public awareness about the impact of brain tumours on quality of life. To facilitate this, BRIAN will be linked with relevant ODS Standard Repository Data freely available from the NHS Digital website, DIDs data, Civil Registration Data and data supplied by the patients themselves. OBJECTIVES FOR PROCESSING 2) In addition to informing the services TBTC provides, a series of surveillance reports will be produced, highlighted during the requirements gathering process. These reports will include information related to the time taken to diagnose brain tumours in the various age bands; information on availability of services from region to region; information relating to life expectancy once diagnosis has taken place; frequency of hospital visits; journey time to appointments; variations on the brain tumour pathways from region to region and survival rates derived from the Civil Registration data set and other related information requested by patients. 1) To provide The Charity Support Department and Senior Management with information about the brain tumour care pathway not available elsewhere, to inform the services provided and produce anonymised reports to raise public awareness about the impact of brain tumours on quality of life. To facilitate this, BRIAN will be linked with relevant ODS Standard Repository Data freely available from the NHS Digital website, DIDs data, Civil Registration data and data supplied by the patients themselves. 3) When the data is stored and linked in BRIAN researchers will be able to complete an application process to request and justify data items from a data dictionary. The data will be aggregated with small numbers suppressed. 2) In addition to informing the services The Charity provides, a series of surveillance reports will be produced, highlighted during the requirements gathering process. These reports will include information related to the time taken to diagnose brain tumours in the various age bands; information on availability of services from region to region; information relating to life expectancy once diagnosis has taken place; frequency of hospital visits; journey time to appointments; variations on the brain tumour pathways from region to region and survival rates derived from the Civil Registration data set and other related information requested by patients. ~~TBTC~~ 3) When the data is stored and linked in BRIAN, researchers will be able to complete an application process to request and justify data items from a data dictionary. Before any data could be shared with researchers The Charity would have to apply for and be granted a sub-licencing agreement from NHS Digital. Any data made available to researchers would be aggregated with small numbers suppressed. The Charity will use BRIAN information to inform and change central policy which has been demonstrated through the introduction of 5-ALA across England after ~~TBTC~~ The Charity campaigned and raised awareness of the geographical discrepancies. 5-ALA (known as “The [8 words unchanged] helps neurosurgeons see and successfully remove more of a tumour during surgery. ~~TBTC play~~ The Charity plays an active role in association with other organisations such as Cancer 52 who combine the force of many of the rarer cancer charities together to bring about change. ~~TBTC~~ The Charity intends to offer support and guidance to other smaller charities wishing to go through the process of acquiring data from NHS Digital. ~~4) Civil registration data is key to measuring the optimum treatment pathway and survival rates. Date of death is required to calculate those survival rate.~~ 4) Access to the Hospital Episode Statistics (HES) datasets (Admitted Patient Care, Outpatient, Accident & Emergency) at a patient level will enable reporting on the experience of brain tumour patients at NHS Hospitals in England, particularly the nature of their referral to secondary care, the healthcare professionals involved in their care and the period of time that episode of care lasted. Data on the period from operation to discharge may provide insights on the outcomes of a particular treatment. ~~5) DIDs data is required to allow reporting on events that happen in hospital such as scans so the type of scan can be identified and which part of the body was scanned.~~ 5) Civil registration data is key to measuring the optimum treatment pathway and survival rates. Date of death is required to calculate those survival rates. The impact of this analysis is measured through the monitoring of TBTC strategy and associated Key Performance Indicator’s which are reviewed and measured regularly. TBTC are half way through a five year strategy and can demonstrate that diagnosis time in children has reduced significantly as a direct result of campaigning. Once TBTC has reached the pre-determined targets they are revised to ensure they stay challenging and effective. TBTC ensures the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours. Providing aggregated data with small numbers suppressed or anonymised record level data for research and the publication of surveillance reports will help measure and achieve the overall strategy. 6) DIDs data is required to allow reporting on events that happen in hospital such as scans and enables the type of scan to be identified and also the part of the body that was scanned. The impact of this analysis is measured through the monitoring of The Charity strategy and associated Key Performance Indicators which are reviewed and measured regularly. The Charity is towards the end of a five year strategy and can demonstrate that diagnosis time in children has reduced significantly as a direct result of campaigning. Once The Charity has reached the pre-determined targets they are revised to ensure they stay challenging and effective. The Charity ensures the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours. Providing aggregated data with small numbers suppressed or anonymised record level data for research and the publication of surveillance reports will help measure and achieve the overall strategy. COHORT AND DATA FIELD SELECTION The population base for the BRIAN database is all adults and children diagnosed with a primary brain tumour in the UK, including those that are now deceased. The Charity will specify this cohort of brain tumour patients using the list of relevant World Health Organization ICD-10 codes. Initially The Charity is seeking to obtain data from NHS Digital relating to patients treated in England and will then seek to extend coverage to include those treated in Wales, Scotland and Northern Ireland by applying for datasets from the equivalent organisations to NHS Digital in the devolved nations. Geographical coverage across the whole country is essential so that The Charity can compare variations in treatment and outcomes between regions. In order to build a research database that is fit for purpose for researchers The Charity needs to be able to provide long time series of data and so this is the reason for The Charity requesting data back as far as 2008. The data that The Charity is seeking to obtain through this application is pseudonymised data but NHS Digital will identify for The Charity which records correspond to our consented cohort. The Charity has worked closely with NHS Digital to understand more about the HES datasets in order to minimise the data fields that it has selected in our application. The Charity has also spent a significant amount of time studying the HES data dictionaries and has sent three members of staff on the University of York course “Analysing Patient-Level Data using Hospital Episode Statistics (HES)”. DATA CONTROLLER/PROCESSORS The Brain Tumour Charity is the Sole Data Controller. The Brain Tumour Charity and Microsoft Ltd are joint Data Processors. LEGAL BASIS 1) The Article 6 justification for processing the data is 1 (f), which states that “processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party, except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child.” The Charity is patient led and is seeking to use data on the treatment, care and quality of life of brain tumour patients to benefit both current and future brain tumour patients. In a 2017 survey, The Charity found that almost all of those diagnosed with a brain tumour would be willing to share information about their diagnosis and subsequent treatment in order to help develop better treatments. Of 270 respondents to the survey, 97% (262 respondents) agreed with the statement: “I would be willing to give my medical and health data to the data bank (BRIAN) to help improve brain tumour treatment and care." Asked to explain their motivation, almost 88% (230 people) said they would do it “to improve outcomes and help others with the disease now and in the future, even if I get no benefit", while 8% (21 people) said they would do it for the improvements it could bring to their own care, treatment and quality of life. 2) The Article 9 justification for processing the data is 2 (j), which states that “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.” BRIAN is a contemporary 21st Century patient-led databank / registry and a first step towards building a global brain tumour database. BRIAN will contribute to The Charity’s strategic objectives of doubling survival and halving the harm caused by brain tumours by 2020. BRIAN will combine national brain tumour data sets with patient entered /obtained data and make this available, in an ethical responsible manner, to researchers, clinicians and patients alike. BRIAN is becoming the foremost, pioneering, data platform, proving the value of such a platform for collecting and securely sharing both healthcare records and patient-reported quality of life information. BRIAN will become the trusted tool of choice for those affected with a brain tumour in harnessing the power of their data, to bring hope and enable those affected with a brain tumour to make informed decisions, using the power of their collective, curated data to improve outcomes. BRIAN will be the leading source of reliable, timely research data, giving researchers and clinicians rapid access to extensive, high-quality, longitudinal patient data, driving improvements in quality of life and accelerating the path to a cure.

Processing activities

The quality of life patient data is derived from patients/carers who have consented for ~~TBTC~~ The Charity to access their health records. The ~~TBTC produces~~ Charity has produced a series of Patient Information Sheets (PIS) and Consent Forms (CFs) to [47 words unchanged] are reviewed regularly and provide the ability for patients to progress from ~~child~~ children to ~~adulthood.~~ adults. It is proposed that all patients will be re-consented at the age of 16. The Brain Tumour Charity have designed the process for handling the re-consent of children when they reach 16 but still need to decide how to integrate this with the registration process. At the point the data is uploaded to BRIAN any identifiable elements are stripped out (name, address, email address, NHS number) and sent to a ~~Customer Relationship Management System (Sales Force)~~ system which is kept completely separate from BRIAN. This is for security purposes [30 words unchanged] which are designed for each user and they are Patient, Research and ~~Analyst .~~ Analyst. Each person consenting ~~or eligible~~ to use BRIAN ~~is given a unique log in i.d. and password once~~ has their NHS number (or identity) is validated. Once the cohort of identifiable data is received, from national data sources it will be mapped and loaded into a relational data schema (BRIAN) ~~along side~~ alongside SNOMED, NICIP Codes and Quality of Life Data. It will then be [28 words unchanged] of this intelligence. All individuals with access to the raw data are either substantive ~~employees/contractors~~ employees of The Brain Tumour ~~Charity.~~ Charity or of its industry partner. ~~All patients will be re-consented at the age of 16.~~ NHS Digital will identify the pseudo cohort from HES based on the ICD-10 diagnosis codes supplied by The Charity and construct a pseudo dataset that contains all the episodes for patients identified in the pseudo cohort. The Charity will send NHS Digital the following details for each individual in the consent cohort: a BRIAN ID (i.e. a study ID), an NHS Number, the date of birth, forename, surname and gender. NHS Digital will endeavour to map each individual in the consent cohort to an individual in the pseudo cohort. For each individual that is successfully mapped in this way, NHS Digital will then append an entry to the pseudo dataset for the BRIAN ID, as well as appending entries for the identifiable fields that The Charity has requested. The Charity will produce reports and insights needed to support ~~our~~ its strategic objectives. The types of reports expected to be produced are listed [12 words unchanged] data with small numbers suppressed in line with the HES Analysis Guide. ~~The data from NHS Digital will not be used for any purpose other than that outlined in this Agreement.~~ The data from NHS Digital will not be used for any purpose other than that outlined in this Agreement. There will be no attempt to re-identify individuals in the dataset from NHS Digital except in the case of those that are in the consent cohort. In the case of the consent cohort, The Charity will provide NHS Digital with the list of consented patients so that NHS Digital is able to identify them within the pseudonymised cohort for The Charity. There has been little progression towards finding a cure for brain tumours in the last 20 years and any improvements have been marginal. It is important to capture any changes in this trend and in order to do this there is a need to have historical data. The Charity will be producing a number of surveillance/audit reports, in order to follow and report on patient pathway. A minimum of 10 years data is required in order to carry out robust and reliable analysis to feed into the surveillance reports. Policy for use and release of the data – Access to BRIAN data, whether requested by Charity staff, patients, carers, researchers, clinicians, or healthcare managers, will be controlled by the Data Access Board. This Board will include academics, clinicians and The Charity's data governance lead and Caldicott Guardian. Access to BRIAN will be permitted where the requester can justify the need in terms of better outcomes for current or future patients. The requester will also need to show that they have appropriate training and work in a sufficiently secure environment given the sensitivity of the data they will be accessing. For each request the access will be limited to the minimum required to meet the agreed objectives. There has been little progression towards finding a cure for brain tumours in the last 20 years and any improvements have been marginal. It is important to capture any changes in this trend and in order to do this there is a need to have historical data. The Charity will be producing a number of surveillance/audit reports, in order to follow and report on the patient pathway. A minimum of 10 years data is required in order to carry out robust and reliable analysis to feed into the surveillance reports. BRIAN needs a rich enough source of data for individual research to be undertaken. The number of data years requested is proportionate to the level of analysis ~~TBTC~~ The Charity intends to carry out. This will enable appropriate results to be disseminated to achieve the maximum impact ~~into~~ on the investigation into the 10 year survival rate. It is The Charity's intention to store data in the Microsoft Azure cloud and TBTC have been working with NHS Digital Security since February 2018 to gain approval. Microsoft Ltd is named as a data processor in this agreement. Within TBTC only substantive employees of TBTC have access to the data. Security and storage are increased in line with TBTC requirements. Microsoft Azure allows for flexibility in storage requirements should they expand or contract. Microsoft Azure have all relevant accreditation required for safe storage. BRIAN has been developed as a Microsoft SQLServer database. SQLServer has comprehensive audit features which will be used to identify if anyone has been attempting to access data for which they are not authorised, or if anyone has been trying to change the current security settings. Overall database security will be the responsibility of a Database Administrator and they will routinely execute audit reports. They will also interpret the results of the audit reports and carry out any necessary action. Thresholds will be set in the database which will automatically alert the Database Administrator if a significant security breach is detected. Access to the database is restricted by the strict firewalls in place. The web server will be connected over a WAN network but there will be strict firewall rules in place to control who can access the servers. The database server will be on a VPN connection with the web server, and the database server will not be publicly accessible. Access to the web server will be restricted to authorised personnel and can only be connected to from the physical building – this will be implemented using IP rules on the firewall. NHS Digital Security approved The Charity storing data in the Microsoft Azure cloud in February 2019 and this was formally signed off in the DSA that The Charity signed in August 2019. Microsoft Ltd is named as a data processor in this agreement. Within The Charity only substantive employees of The Charity or its industry partner have access to the data. Security and storage are increased in line with The Charity's requirements. Microsoft Azure allows for flexibility in storage requirements should they expand or contract. Microsoft Azure has all relevant accreditation required for safe storage. NHS Digital will link the HES, DID and CR datasets together for The Charity.

Expected output

The Charity will use pseudonymised ~~HES;~~ HES, DID and Civil Registration data to create surveillance reports of the type listed below and data extracts specifically designed for research purposes: • Demographics of people living with a brain tumour to highlight any regional variations and investigate ~~why?~~ why. • Age at time of diagnosis to see whether that is changing over time and see if HES data can explain ~~why?~~ why. [4 paragraphs unchanged] • Impact of different brain tumour ~~treatments~~ treatments. • Country/Regional brain tumour statistics (type, volume and ~~region)~~ region). • Regional comparisons of treatment and care pathways and service ~~provision~~ provision. • Information about different brain tumour patient ~~pathways~~ pathways. • Adherence to NICE ~~guidelines~~ guidelines. • Anonymised bespoke data extracts for research purposes (stored in ~~BRIAN)~~ BRIAN). • Survival trends and rates (Civil Registration ~~Data)~~ data). • Palliative care trends and ~~options~~ options. • ~~Type scanning~~ Types of scans being undertaken ~~(DIDs)~~ (DIDs). • Location of scanning ~~(DIDs)~~ (DIDs). The Brain Tumour Charity would expect to begin producing reports within four to five months of receiving the records from NHS Digital in ~~Spring 2019~~ January 2020 and the first extracts for use by researchers by September 2020, subject to a sub-licencing agreement being in ~~Autumn 2019.~~ place with NHS Digital (this would be the subject of a future data application). Reports will always be aggregated with small numbers suppressed, in line with the HES ~~analysis guide.~~ Analysis Guide. The surveillance reports will be published in a ~~multi layered~~ multi-layered approach through ~~the TBTC website. We~~ BRIAN. The Charity will also include findings in our annual report and other Charity publications such as a its quarterly newsletter. This ~~newsletter~~ newsletter, called The Grey ~~Matters~~ Matters, has a circulation of 20,000 and it is ~~circulated~~ distributed to supporters, patients and carers. [1 paragraph unchanged] ~~TBTC~~ The Charity often hosts ~~meetings,~~ meetings with researchers and attends poster sessions ~~and takes~~ at conferences, as well as taking speaking roles at conferences on topics related to brain tumour research, support and ~~sharing the work~~ also in order to share details of ~~The Charity.~~ its work. Below are examples of conferences that The Brain Tumour Charity ~~will attend~~ attends to share findings from research studies and data analysis and discuss the process of data sharing through the sub-licencing process. [4 paragraphs unchanged] These events also provide an opportunity to share and promote work to [27 words unchanged] resources to apply for funding for brain tumour research projects. As such, ~~TBTC~~ The Charity will use these conferences as a platform to share any insights that [5 words unchanged] data about the brain tumour pathway with both healthcare professionals and researchers. ~~TBTC~~ The Charity also has a dedicated Healthcare Engagement team who regularly visit clinical teams, attend information days and host ~~in house~~ in-house healthcare professional study days to share best practice and promote recruitment ~~and benefits of BRIAN.~~ to BRIAN its benefits. These study days have proved to be excellent in facilitating the learning and sharing of best practice across the UK and ~~TBTC plan~~ The Charity plans to be able to share key findings about the patient pathway at ~~an upcoming Study Day in September 2019~~ future study days to continue to develop clinical services nationally and highlight the key issues faced by brain tumour patients. ~~TBTC is~~ The Charity has committed to investing ~~a further £20~~ £50 million to date in research to find a cure for brain tumours and to reduce [5 words unchanged] quality of life through earlier intervention and the provision of research data.

Expected measurable benefits

The Charity is ~~mid way through~~ near the end of a five year strategic plan which runs from 2015 to 2020. The [20 words unchanged] delivering on the longer-term objections, with specific initiatives relating to BRIAN being:- A cure can't wait - having access to HES/DIDs/Civil Registration and other data will help The Charity identify the most promising treatment and care pathways, ~~actions,~~ actions and outcomes. Once identified ~~TBTC~~ The Charity can influence the wider adoption of these across the NHS. This will [12 words unchanged] may, over time, make the most aggressive tumours a chronic rather than a terminal condition. ~~TBTC~~ The Charity has numerous ways of ensuring findings reach the right audience and are adopted appropriately. This includes speaking at various conferences and seminars and influencing politicians and senior ~~health care~~ healthcare professionals and managers. Every patient is a research patient - ~~TBTC want~~ The Charity wants 70% of the newly diagnosed patients to contribute to some form of [45 words unchanged] will be a more efficient way of matching patients to available trials. Early intervention to reduce diagnosis ~~time. TBTC~~ time - The Charity has a campaign that has reduced diagnosis time for children from nine [30 words unchanged] survival rates. The analysis of HES and other data sets will allow ~~TBTC~~ The Charity to identify both the time to diagnosis and the signs that can [13 words unchanged] physicians, parents and patients which lead to an early, and accurate diagnosis. The Charity is launching a campaign to reduce diagnosis time for adults and halve it. ~~TBTC is launching a campaign to reduce diagnosis time for adults and halve it.~~ Improving quality of care pathways and day-to-day life - over 90% of beneficiaries responding to a survey distributed to those people affected by brain tumours and supported by The Charity stated that The Charity makes a meaningful difference to their life. This is now a strategic KPI on The Charity’s balanced scorecard with an improvement target. The Charity will produce surveillance reports and raise public awareness of brain tumours, and publish them via the website, forums, conferences, and media channels such as newspapers, television and radio. The Charity is committed to raise the awareness of brain tumours and their devastating impact on patients and their families in order to drive improvements to treatment and care pathways. The Charity also plans to support patients in managing their quality of care by offering information and self-management tools through the BRIAN patient interface. This reduces weeks of internet searches and a confusing array of information for patients and carers when time may be short or better spent with loved ones. The timescales will be within months of receiving HES data. Improving quality of care pathways and day to day life - over 90% of beneficiaries responding to a survey distributed to those people affected by brain tumours and supported by The Charity stated that TBTC makes a meaningful differences to their life. This is now a strategic KPI on The Charity’s balanced scorecard with an improvement target. The Charity will produce surveillance reports and raise public awareness of brain tumours, and publish them via the website, forums, conferences, and media channels such as news papers, television and radio. TBTC is committed to raise the awareness of brain tumours and their devastating impact on patients and their families in order to drive improvements to treatment and care pathways. TBTC also plans to support patients in managing their quality of care by offering information and self-management tools through the BRIAN patient interface. This reduces weeks of internet searches and a confusing array of information for patients and carers when time may be short or better spent with loved ones. The timescales will be within months of receiving HES data. These initiatives have been derived following extensive experience gained from working with, and improving the lives of, brain tumour patients. The Charity also has an extensive network of clinicians, researchers, and institutions who support the strategic objectives, and, in many cases, receive funding and resources directly from The Charity. The Charity believes it has the experience to choose the right initiatives, networks, influence and recognition to affect the necessary change. The Charity currently needs hard evidence to support the strategic initiatives, the data that will confirm the most effective treatment pathways, or identify areas of weakness, or that require additional investment. These initiatives have been derived following extensive experience gained from working with, and improving the lives of, brain tumour patients. TBTC also has an extensive network of clinicians, researchers, and institutions who support the strategic objectives, and, in many cases, receive funding and resources directly from The Charity. TBTC believes it has the experience to choose the right initiatives, networks', influence and recognition to affect the necessary change. TBTC currently needs hard evidence to support the strategic initiatives, the data that will confirm the most effective treatment pathways, or identify areas of weakness, or that require additional investment. Equal access to the best treatment and care pathways will be derived from surveillance reports and analysis to identify the optimum treatment pathway for different patient groups with different types of brain tumours. The Charity will implement a programme to first publicise these pathways, to obtain general agreement, and then to influence their wider adoption. The Charity will ensure that all patients that are contactable through the various channels available, are made aware of the options available and the likely outcomes for a given situation. The Charity will also support clinicians in producing better outcomes for patients by understanding the variation in access to treatment/clinical procedures beyond their own immediate clinic. Equal access to the best treatment and care pathways will be derived from surveillance reports and analysis to identify the optimum treatment pathway for different patient groups with different types of brain tumours. TBTC will implement a programme to first publicise these pathways, to obtain general agreement, and then to influence their wider adoption. TBTC will ensure that all patients that are contactable through the various channels available, are made aware of the options available and the likely outcomes for a given situation. TBTC will also support clinicians in producing better outcomes for patients by understanding the variation in access to treatment/clinical procedures beyond their own immediate clinic. [1 paragraph unchanged] Reports will be used by ~~TBTC~~ The Charity to develop support services to brain tumour patients who approach ~~TBTC~~ The Charity for help. This may include advice on treatment centres of excellence, different [10 words unchanged] quality 'end of life' care. With the addition of Civil Registration data ~~TBTC~~ The Charity can establish survival rates based on location and treatment options to ~~established~~ establish any evidence of variation and why some people survive longer than ~~others for example~~ others. For example, continuous chemotherapy treatment has extended the life for GBM patients but it is not known for how long or for how many people. The Charity's ~~Clinical Nurse Specialists~~ clinical nurse specialists want accurate, evidence based information that can be can shared with newly [50 words unchanged] receive can be derived from DIDs data which will allow for reporting in on the location and type of scans and what impact it has on treatment decisions or survival rates. Additional information extracted from the analysis will be used to inform the [50 words unchanged] as the adoption of 5 ALA. As seen in other disease areas, ~~TBTC~~ The Charity believes that increasing public awareness brings about positive change in treatments, outcomes and service provision. Researchers and clinicians will benefit by being able to apply for specific [32 words unchanged] to benchmark performance outcomes across different hospitals to justify further resources i.e. ~~in theatre~~ 'in theatre' MRI scanning equipment is available in each hospital and cost justifications are difficult. This latest dissemination will provide The Charity with access to the Civil Registration and Diagnostic Imaging Datasets. Civil registration will provide the Charity with data on all those that have died of a brain tumour, not just those that have died in hospital. As a result, it will enable The Charity to calculate survival rates for all brain tumour patients. Access to the DID dataset will provide The Charity with a more comprehensive view of the patient pathway for brain tumour patients.

Benefits reported

The key benefit to date is the upskilling of ~~TBTC~~ The Charity BRIAN ~~team~~ team, allowing analysts to fully understand the characteristics of the data in order to use it appropriately for reporting. It was only possible for ~~TBTC~~ The Charity to start to develop a full understanding of the data set once the actual data was received (no synthetic data is available from NHS Digital). Analysts ~~are~~ have been looking at the content and completeness of the data to derive the [5 words unchanged] rules which are critical to the project which also includes reference data. Initial analysis has been completed on brain cancer survival rates (high grade) showing differences for those hospitals following a patient centric model and those not following a patient centric model. The model was devised in Addenbrooks Hospital and processes were revised to put patients at the heart of the brain tumour pathway. Every patient receives an individual treatment pathway based on the results of a review by a multi-disciplinary team and continuous monitoring by dedicated brain tumour health care professionals. It is not known what impact this approach has had on those living with brain tumours and if survival rates are longer. TBTC have been able to start looking at this model patients who died in hospital in the last ten years to check for any emerging positive trends. Once again, this has highlighted information required to fulfil the analysis. Data insight analysts in the team have now begun to produce analysis and graphical reports from the original pseudonymised data dissemination from NHSD. The Charity anticipates sharing some of the reports - which show aggregated data - when The Charity launches its patient portal for brain tumour patients towards the end of 2019. Data insights available may include, but are not limited to, analysis of comorbidities, length of hospital stays, frequency of treatments and distance travelled for treatment. Insights of this nature will allow patients to make more informed decisions about their treatment and care but will also highlight areas of excellence in service provision. Database analysts in the team have managed to identify the fields within the datasets that would satisfy these reporting requirements. They are now working to craft bespoke queries to provide the data needed in the format required to visualise these data insights. Individuals will be able to filter these visualisations by tumour types (by ICD-10 code), tumour grade and age group to ensure they receive data reflective of their personal experience. Initial analysis has been completed on brain cancer survival rates (for high grade tumours) showing the difference between those hospitals following a patient centric model and those that are not. The model was devised in Addenbrooks Hospital and processes were revised to put patients at the heart of the brain tumour pathway. Every patient receives an individual treatment pathway based on the results of a review by a multi-disciplinary team and continuous monitoring by dedicated brain tumour healthcare professionals. It is not known what impact this approach has had on those living with brain tumours and if survival rates are longer. This has highlighted further information that is required to undertake such an analysis.

Objective for processing

BACKGROUND

Brain tumours are the biggest cancer killer of children and adults under 40. Over 100,000 people are currently living with a brain tumour in the UK and most are coping with a reduced quality of life. Whilst survival has doubled across all cancers, ten year survival rates for brain tumours have improved little for adults in over 40 years and in that time the number of brain tumour diagnoses has doubled. In the same time frame the proportion of people who survived for ten years after leukaemia diagnosis has increased more than six fold. Survival rates for brain tumour patients remain amongst the poorest of all cancers. The Brain Tumour Charity (The Charity) has a strategy to double survival and halve the harm that brain tumours have on quality of life. One of the ways The Charity strives to achieve this strategy is by funding research. The Charity has committed over £50 million to date on pioneering projects that will help adults and children with brain tumours. The Charity funds research through a competitive, fair and transparent process of best practice called peer review to ensure only the very best research is selected that will have a real impact on those affected by brain tumours.

The aim of The Charity is to establish a research database, BRIAN, which can be used to facilitate research projects from third parties with suitable permissions and to enable cohort data to be included in BRIAN and selected from a data dictionary. This agreement does not permit the onward sharing of data to any third party. The Charity intends to apply for a sub-licence agreement in the future.

BRIAN will also allow those patients who have consented to access their own identifiable health records and read them in plain text.

OBJECTIVES FOR PROCESSING

5) Civil registration data is key to measuring the optimum treatment pathway and survival rates. Date of death is required to calculate those survival rates.

6) DIDs data is required to allow reporting on events that happen in hospital such as scans and enables the type of scan to be identified and also the part of the body that was scanned.

The impact of this analysis is measured through the monitoring of The Charity strategy and associated Key Performance Indicators which are reviewed and measured regularly. The Charity is towards the end of a five year strategy and can demonstrate that diagnosis time in children has reduced significantly as a direct result of campaigning. Once The Charity has reached the pre-determined targets they are revised to ensure they stay challenging and effective. The Charity ensures the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours. Providing aggregated data with small numbers suppressed or anonymised record level data for research and the publication of surveillance reports will help measure and achieve the overall strategy.

COHORT AND DATA FIELD SELECTION

DATA CONTROLLER/PROCESSORS

The Brain Tumour Charity is the Sole Data Controller. The Brain Tumour Charity and Microsoft Ltd are joint Data Processors.

LEGAL BASIS

Expected output

The Charity will use pseudonymised HES, DID and Civil Registration data to create surveillance reports of the type listed below and data extracts specifically designed for research purposes:

• Demographics of people living with a brain tumour to highlight any regional variations and investigate why.

• Age at time of diagnosis to see whether that is changing over time and see if HES data can explain why.

• Time taken to receive first course of treatment and the variations that occur.

• Time taken to tumour recurrence and life expectancy after diagnosis and associated variations.

• State of tumour and changes that occur as a result of a procedure or treatment.

• Impact of different brain tumour treatments.

• Country/Regional brain tumour statistics (type, volume and region).

• Regional comparisons of treatment and care pathways and service provision.

• Information about different brain tumour patient pathways.

• Adherence to NICE guidelines.

• Anonymised bespoke data extracts for research purposes (stored in BRIAN).

• Survival trends and rates (Civil Registration data).

• Palliative care trends and options.

• Types of scans being undertaken (DIDs).

• Location of scanning (DIDs).

The Brain Tumour Charity would expect to begin producing reports within four to five months of receiving the records from NHS Digital in January 2020 and the first extracts for use by researchers by September 2020, subject to a sub-licencing agreement being in place with NHS Digital (this would be the subject of a future data application).

Reports will always be aggregated with small numbers suppressed, in line with the HES Analysis Guide. The surveillance reports will be published in a multi-layered approach through BRIAN. The Charity will also include findings in our annual report and other Charity publications such as its quarterly newsletter. This newsletter, called The Grey Matters, has a circulation of 20,000 and it is distributed to supporters, patients and carers.

• International Symposium on Pediatric Neuro-Oncology (ISPNO)

• British Neuro-Oncology Society (BNOS)

• Society of British Neurosurgical Surgeons (SBNS) & Association of British Neurologists (ABN)

• Society of NeuroOncology (SNO)

Benefits reported

The key benefit to date is the upskilling of The Charity BRIAN team, allowing analysts to fully understand the characteristics of the data in order to use it appropriately for reporting. It was only possible for The Charity to start to develop a full understanding of the data set once the actual data was received (no synthetic data is available from NHS Digital). Analysts have been looking at the content and completeness of the data to derive the processing, mapping and error management rules which are critical to the project which also includes reference data.

Data insight analysts in the team have now begun to produce analysis and graphical reports from the original pseudonymised data dissemination from NHSD. The Charity anticipates sharing some of the reports - which show aggregated data - when The Charity launches its patient portal for brain tumour patients towards the end of 2019. Data insights available may include, but are not limited to, analysis of comorbidities, length of hospital stays, frequency of treatments and distance travelled for treatment. Insights of this nature will allow patients to make more informed decisions about their treatment and care but will also highlight areas of excellence in service provision.

Database analysts in the team have managed to identify the fields within the datasets that would satisfy these reporting requirements. They are now working to craft bespoke queries to provide the data needed in the format required to visualise these data insights. Individuals will be able to filter these visualisations by tumour types (by ICD-10 code), tumour grade and age group to ensure they receive data reflective of their personal experience.

Initial analysis has been completed on brain cancer survival rates (for high grade tumours) showing the difference between those hospitals following a patient centric model and those that are not. The model was devised in Addenbrooks Hospital and processes were revised to put patients at the heart of the brain tumour pathway. Every patient receives an individual treatment pathway based on the results of a review by a multi-disciplinary team and continuous monitoring by dedicated brain tumour healthcare professionals. It is not known what impact this approach has had on those living with brain tumours and if survival rates are longer. This has highlighted further information that is required to undertake such an analysis.

DARS-NIC-158754-R5T3V-v1.10 14 March 2019 to 13 March 2020

Title: BRIAN (Brain Tumour Information and Analysis Network) is an online information system that will enable patients to make better-informed decisions about their treatment and accelerate research to find a cure.
Commercial: No
Sublicensing: No
Datasets: 12
Files released: 0

Objective for processing

Background

Brain tumours are the biggest cancer killer of children and adults under 40. Over 100,000 people are currently living with a brain tumour in the UK and most are coping with a reduced quality of life. Whilst survival has doubled across all cancers, ten year survival rates for brain tumours have improved little for adults in over 40 years and in that time the number of brain tumour diagnoses has doubled. In the same time frame the proportion of people who survived for ten years after leukaemia diagnosis has increased more than six fold. Survival rates for brain tumour patients remain amongst the poorest of all cancers. The Brain Tumour Charity (TBTC) has a strategy to double survival and halve the harm that brain tumours have on quality of life. One of the ways TBTC strives to achieve this strategy is by funding research. TBTC has committed over £35.6 million to date on pioneering projects that will help adults and children with brain tumours. TBTC funds research through a competitive, fair and transparent process of best practice called peer review to ensure only the very best research is selected, that will have a real impact on those affected by brain tumours.

The aim of the TBTC is to establish a research database, BRIAN, which can be used to facilitate research projects from third parties with suitable permissions and to enable cohort data to be included in BRIAN and selected from a data dictionary. This agreement does not permit the onward sharing of data to any third party. TBTC intend to apply for a sub-licence agreement in the future.

BRIAN will also allow those patients who have consented to access their own identifiable health records and read them in plain text.

1) To provide the TBTC Support Department and Senior Management with information about the brain tumour care pathway not available elsewhere, to inform the services provided and produce anonymised reports to raise public awareness about the impact of brain tumours on quality of life. To facilitate this, BRIAN will be linked with relevant ODS Standard Repository Data freely available from the NHS Digital website, DIDs data, Civil Registration Data and data supplied by the patients themselves.

2) In addition to informing the services TBTC provides, a series of surveillance reports will be produced, highlighted during the requirements gathering process. These reports will include information related to the time taken to diagnose brain tumours in the various age bands; information on availability of services from region to region; information relating to life expectancy once diagnosis has taken place; frequency of hospital visits; journey time to appointments; variations on the brain tumour pathways from region to region and survival rates derived from the Civil Registration data set and other related information requested by patients.

3) When the data is stored and linked in BRIAN researchers will be able to complete an application process to request and justify data items from a data dictionary. The data will be aggregated with small numbers suppressed.

TBTC will use BRIAN information to inform and change central policy which has been demonstrated through the introduction of 5-ALA across England after TBTC campaigned and raised awareness of the geographical discrepancies. 5-ALA (known as “The Pink Drink”) is a valuable surgical aid which helps neurosurgeons see and successfully remove more of a tumour during surgery. TBTC play an active role in association with other organisations such as Cancer 52 who combine the force of many of the rarer cancer charities together to bring about change. TBTC intends to offer support and guidance to other smaller charities wishing to go through the process of acquiring data from NHS Digital.

4) Civil registration data is key to measuring the optimum treatment pathway and survival rates. Date of death is required to calculate those survival rate.

5) DIDs data is required to allow reporting on events that happen in hospital such as scans so the type of scan can be identified and which part of the body was scanned.

The impact of this analysis is measured through the monitoring of TBTC strategy and associated Key Performance Indicator’s which are reviewed and measured regularly. TBTC are half way through a five year strategy and can demonstrate that diagnosis time in children has reduced significantly as a direct result of campaigning. Once TBTC has reached the pre-determined targets they are revised to ensure they stay challenging and effective. TBTC ensures the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours. Providing aggregated data with small numbers suppressed or anonymised record level data for research and the publication of surveillance reports will help measure and achieve the overall strategy.

Expected output

The Charity will use pseudonymised HES; DID and Civil Registration data to create surveillance reports of the type listed below and data extracts specifically designed for research purposes:

• Demographics of people living with a brain tumour to highlight any regional variations and investigate why?

• Age at time of diagnosis to see whether that is changing over time and see if HES data can explain why?

• Time taken to receive first course of treatment and the variations that occur.

• Time taken to tumour recurrence and life expectancy after diagnosis and associated variations.

• State of tumour and changes that occur as a result of a procedure or treatment.

• Impact of different brain tumour treatments

• Country/Regional brain tumour statistics (type, volume and region)

• Regional comparisons of treatment and care pathways and service provision

• Information about different brain tumour patient pathways

• Adherence to NICE guidelines

• Anonymised bespoke data extracts for research purposes (stored in BRIAN)

• Survival trends and rates (Civil Registration Data)

• Palliative care trends and options

• Type scanning being undertaken (DIDs)

• Location of scanning (DIDs)

The Brain Tumour Charity would expect to begin producing reports within four to five months of receiving the records from NHS Digital in Spring 2019 and the first extracts for use by researchers in Autumn 2019.

Reports will always be aggregated with small numbers suppressed, in line with the HES analysis guide. The surveillance reports will be published in a multi layered approach through the TBTC website. We will also include findings in our annual report and other Charity publications such as a quarterly newsletter. This newsletter called Grey Matters has a circulation of 20,000 and it is circulated to supporters, patients and carers.

TBTC often hosts meetings, attends poster sessions and takes speaking roles on topics related to brain tumour research, support and sharing the work of The Charity.

Below are examples of conferences that The Brain Tumour Charity will attend to share findings from research studies and data analysis and discuss the process of data sharing through the sub-licencing process.

• International Symposium on Pediatric Neuro-Oncology (ISPNO)

• British Neuro-Oncology Society (BNOS)

• Society of British Neurosurgical Surgeons (SBNS) & Association of British Neurologists (ABN)

• Society of NeuroOncology (SNO)

These events also provide an opportunity to share and promote work to some of the most internationally renowned professionals in the brain tumour field in the belief they will collaborate with each other to increase research opportunities and pool resources to apply for funding for brain tumour research projects. As such, TBTC will use these conferences as a platform to share any insights that can be generated from patient data about the brain tumour pathway with both healthcare professionals and researchers. TBTC also has a dedicated Healthcare Engagement team who regularly visit clinical teams, attend information days and host in house healthcare professional study days to share best practice and promote recruitment and benefits of BRIAN. These study days have proved to be excellent in facilitating the learning and sharing of best practice across the UK and TBTC plan to be able to share key findings about the patient pathway at an upcoming Study Day in September 2019 to continue to develop clinical services nationally and highlight the key issues faced by brain tumour patients.

TBTC is investing a further £20 million in research to find a cure for brain tumours and to reduce the harm they have on quality of life through earlier intervention and the provision of research data.

Benefits reported

The key benefit to date is the upskilling of TBTC BRIAN team allowing analysts to fully understand the characteristics of the data in order to use it appropriately for reporting. It was only possible for TBTC to start to develop a full understanding of the data set once the actual data was received (no synthetic data is available from NHS Digital). Analysts are looking at the content and completeness of the data to derive the processing, mapping and error management rules which are critical to the project which also includes reference data.

Initial analysis has been completed on brain cancer survival rates (high grade) showing differences for those hospitals following a patient centric model and those not following a patient centric model. The model was devised in Addenbrooks Hospital and processes were revised to put patients at the heart of the brain tumour pathway. Every patient receives an individual treatment pathway based on the results of a review by a multi-disciplinary team and continuous monitoring by dedicated brain tumour health care professionals. It is not known what impact this approach has had on those living with brain tumours and if survival rates are longer. TBTC have been able to start looking at this model patients who died in hospital in the last ten years to check for any emerging positive trends. Once again, this has highlighted information required to fulfil the analysis.

Register history

When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.

July 2021 — already listed in the earliest edition this site holds, so it may be older.
3 versions: DARS-NIC-158754-R5T3V-v1.10, DARS-NIC-158754-R5T3V-v2.6, DARS-NIC-158754-R5T3V-v3.4
January 2022
1 version added: DARS-NIC-158754-R5T3V-v4.9
December 2022
Register-wide edit DARS-NIC-158754-R5T3V-v1.10, DARS-NIC-158754-R5T3V-v2.6, DARS-NIC-158754-R5T3V-v3.4 — Datasets: legal basis: “~~s261(1) and~~” taken out. Made to 639 agreements in this edition, so it is reported once, on the changes page, and not counted as an amendment of this agreement.

Cite this page

NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-158754-R5T3V, “BRIAN (Brain Tumour Information and Analysis Network) is an online information system that will enable patients to make better-informed decisions about their treatment and accelerate research to find a cure.”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-158754-r5t3v/ (accessed [date]).

This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.

Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-158754-R5T3V to see the original rows.