NHS Digital Data Release Register - reformatted
The Brain Tumour Charity projects
211 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
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. — DARS-NIC-158754-R5T3V
Type of data: information not disclosed for TRE projects
Opt outs honoured: No - data flow is not identifiable, No - consent provided by participants of research study, Identifiable, Anonymised - ICO Code Compliant, No (Does not include the flow of confidential data, Consent (Reasonable Expectation), Mixture of confidential data flow(s) with consent and non-confidential data flow(s))
Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(c), Health and Social Care Act 2012 s261(2)(c), Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(1) and 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)(b)(ii); Health and Social Care Act 2012 s261(2)(c)
Purposes: No, Yes (Charity)
Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive
When:DSA runs 2019-03-14 — 2020-03-13 2018.10 — 2022.05.
Access method: One-Off, Ongoing
Data-controller type: THE BRAIN TUMOUR CHARITY
Sublicensing allowed: No
Datasets:
- Hospital Episode Statistics Outpatients
- Hospital Episode Statistics Critical Care
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Diagnostic Imaging Dataset
- Civil Registration - Deaths
- HES:Civil Registration (Deaths) bridge
- Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset
- Civil Registration (Deaths) - Secondary Care Cut
- Civil Registrations of Death - Secondary Care Cut
- Diagnostic Imaging Data Set (DID)
- Hospital Episode Statistics Accident and Emergency (HES A and E)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Critical Care (HES Critical Care)
- Hospital Episode Statistics Outpatients (HES OP)
Objectives:
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 strive 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 fund 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 from third parties with suitable permissions, and to enable cohort data to be included. At this stage however the intention is to create the research database, and use it purely for research delivered by TBTC. Only anonymous data (for example, organisational level data or lookup tables for ICD10 codes) may be linked to the data.
The purpose of creating the research database, BRIAN is necessary for the legitimate interests and basis for processing. The data to which access is requested are proportionate and necessary to achieve those interests.
1) To provide the TBTC Support Department and Senior Management with information about the brain tumour care pathway not available anywhere else, to inform the services provided and produce 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 (anonymous) freely available from the NHS Digital website. This linkage will not increase the likelihood of re identification in any way.
2) In addition to informing the services TBTC provide, a series of surveillance reports will be produced, highlighted during our 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 other related information requested by patients.
TBTC will use this information to inform and change central policy which have been demonstrated through the introduction of 5-ALA across England after TBTC campaigned and raised awareness of the geographical discrepancies. 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.
The impact of our efforts is measured through the monitoring of TBTC strategy and associated KPI’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 the campaigning. Once TBTC have reached the pre-determined targets they are revised to ensure they stay challenging and effective. TBTC ensure the focus remains firmly on the strategic objectives of doubling survival and halving the harm caused by brain tumours. The surveillance reports will help measure and achieve the overall strategy.
Yielded Benefits:
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.
Expected Benefits:
The Charity are mid way through a five year strategic plan which runs from 2015 to 2020. The plan includes a number of SMART initiatives and enablers. The creation of the research database is a first step towards delivering on the longer-term objections, with specific initiatives relating to BRIAN being:-
A cure can't wait - having access to HES and other data will help The Charity identify the most promising treatment and care pathways, actions, and outcomes. Once identified TBTC 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 terminal condition. TBTC have 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 professionals and managers.
Every patient is a research patient - TBTC want 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 by 2020 to provide intervention as early as possible. Over the next two years BRIAN will improve recruitment of brain tumour patients from the current low figures of less than 10%. BRIAN will be a more efficient way of matching patients to available trials.
Early intervention to reduce diagnosis time. TBTC have 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 TBTC 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.
TBTC are launching a campaign to reduce diagnosis time for adults in 2018, and halve it by 2020.
Improving quality of care pathways and day to day life - at least 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 to 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 are 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 plan 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 weeks of receiving HES data.
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 believe they have the experience to choose the right initiatives, networks', influence and recognition to affect the necessary change. TBTC currently need 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 patients 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. Often researchers collect their own data which limits them by volume and is time consuming (years in some cases).
The initial benefits however resulting from the access sought at this time, and therefore from the reports outlined in the outputs sections are:
Reports will be used by TBTC to develop support services to brain tumour patients who approach TBTC 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. 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, thatfear that can lead to desperate behaviours such as expensive overseas treatments which may not always be beneficial. Trusted information will be in one place.
Additionally 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, TBTC believes that increasing public awareness brings about positive change in treatments, outcomes and service provision.
Outputs:
The Charity will use pseudonymised HES data to create surveillance reports of the type listed below:
• 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)
• Regional comparisons of treatment and care pathways and service provision
• Information about different brain tumour patient pathways
• Adherence to NICE guidelines
The Brain Tumour Charity would expect to begin producing reports within two to three weeks of receiving the records from NHS Digital.
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.
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.
TBTC often host meetings, attend poster sessions and take speaking roles on topics related to brain tumour research, support and sharing the work of The Charity.
Below are conferences that the Brain Tumour Charity will attend to share findings from research studies and data analysis
• 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 our work to some of the most internationally renowned professionals in the brain tumour field in the belief they will collaborate to improve research opportunities: efficiencies and apply for funding to undertake brain tumour research projects. As such, TBTC will use these conferences as a platform to share any insights we can generate 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 our own 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 we hope to be able to share key findings about the patient pathway at our upcoming Study Day in September this year to continue to develop clinical services nationally and highlight the key issues faced by brain tumour patients.
TBTC are 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.
Processing:
The data once received will be mapped and loaded into a relational data schema (BRIAN) where it will be mapped to previously down loaded 'master' and 'reference' data sourced from the NHS Digital ODS site so that the HES record will have meaning. This will add the necessary intelligence to the HES records to allow us to produce the data, reports, and insights needed to achieve our objectives. The types of reports expected to be produced are listed in the outputs section.
All individuals with access to the data are substantive employees of The Brain Tumour Charity or Bluecube Technology Solutions Ltd.
All outputs produced by the applicant will be aggregated data with small numbers suppressed in line with the HES Analysis Guide.
The data from NHS Digital will not be used for any other purpose other than that outlined in this Agreement.
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. As a Charity we will be producing a number of surveillance 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.
The purpose of creating BRIAN in the long term is to open the database to third party researchers (only under a data sharing agreement). In order to enable this to happen the TBTC need to be assured that BRIAN has a rich enough source of data for the individual research to be undertaken. The number of data years requested is proportionate to the level of analysis TBTC intend to carry out. This will enable appropriate results to be disseminated to achieve the maximum impact into investigation into the 10 year survival rate.
The IT partner Bluecube Technologies is based in Milton Keynes and use a specialised third party to store the physical servers safely and securely. The BRIAN database server is housed in one such dedicated building (Data Centre) owned by Pulsant Business Unlimited also based in Milton Keynes. Pulsant Business Unlimited is a bricks and mortar storage facility only and do not undertake any back up or processing activities. Data Centres are measured in tiers and the Pulsant Data Centre is Tier 4 which is the highest standard.
In summary Bluecube Technology Solutions Ltd will be hosting BRIAN data safely and keeping it secure and with regular back ups. The flow of data will go from NHS Digital directly through an SFTP transfer to the server.
For Clarity:-
• The server is owned, and maintained by Bluecube Technology Solutions Ltd. TBTC rent space and software and pay a monthly charge to Pulsant Business Unlimited. Bluecube are a named data processor.
• The Brain Tumour Charity administrator will access the server remotely.
• Pulsant Business Unlimited own the building where the server is located.