As the national institute for health data science in the UK, Health Data Research UK (HDR UK) welcomes this development as an opportunity for the research community to safely use data at scale to answer important questions about the causes, prevention and treatment of disease and ultimately improve people’s health outcomes.
HDR UK is working with NHS Digital, as a member of the UK Health Data Research Alliance (UK HDR Alliance) -a consortium of more than 40 major data controllers across the UK- to develop best practice around the ethical use of UK health data for research and innovation at scale. We are supportive of the creation of the General Practice Data for Planning and Research (GPDPR) and will continue to work in partnership with NHS Digital to ensure the following areas remain a priority around the use of this dataset:
1. Analysis of data within a safe setting or a ‘trusted research environment’ (TRE)
By design, these environments protect the privacy of individuals whose health data they hold, by enabling approved researchers to access the data within the environment where it is held rather than it being distributed or shared. In addition, the data accessed within these environments are de-identified (meaning that direct identifiers such as name, address, NHS number and exact date of birth are removed), which protects the identities of the people whose data are included. There are now multiple examples of TREs operating successfully in this way, both for healthcare data and other potentially sensitive data, and the responses to the COVID-19 pandemic has accelerated this shift. Examples include, but are not limited to the CVD-COVID-UK consortium in partnership with NHS Digital, the UK Secure eResearch Platform in Wales, and OpenSAFELY.
2. Following principles for the safe use of health data.
All organisations working with HDR UK sign up to our ‘Principles for Participation’ which guide our working practices and draw on national and international best practice frameworks. These include the ‘five safes’ – safe people; safe projects; safe settings; safe outputs and safe data – which provide multiple safeguards for ensuring the security and privacy of patient health data. The aim is to ensure privacy and the ability to audit how data are being used.
3. The dataset will be listed and available to request access to through the Health Data Research Innovation Gateway (HDR Innovation Gateway).
The HDR Innovation Gateway is the UK’s portal for the discovery of and access to health data. By listing the General Practice Data for Planning and Research dataset here, it will create transparency about the data being made available, how the data are used for research and for what purpose. There are now over 600 other health datasets listed on the Gateway; a number which is growing as the platform continues to establish itself as the unified location for safe, secure and transparent data access in the UK.
4. Ensuring patients and the public are involved in access to data for research.
Patients and the public are key partners in our work, through clear communications and engagement to build understanding and create knowledge; being transparent in how data is accessed and used; and through meaningful involvement in decision making and shaping projects. Public involvement is not only the right thing to do, but it also improves the impact of research. Decisions on the use of the data should demonstrate public benefit in line with planned guidance from the National Data Guardian following the dialogue to explore how people weigh up the benefits and disadvantages of health and social care data sharing for research.
Professor Cathie Sudlow, Director of the British Heart Foundation (BHF) Data Science Centre, Health Data Research UK, said:
“Conditions such as arthritis, dementia, impaired vision or hearing, respiratory conditions, heart failure and mental health – often managed outside of hospital – have been under-represented in large scale research studies because the data has been unavailable. The availability of this new dataset via NHS Digital, will help redress this current imbalance, with the potential for major impact on the public’s health.
We are working with NHS Digital as a partner to ensure that this important resource of people’s individual health data is used safely and ethically by approved researchers, within a trusted research environment and with patient and public involvement.
One example of research currently being conducted by the BHF Data Science Centre’s CVD-COVID-UK Consortium within NHS Digital’s Trusted Research Environment is an investigation of the impact of COVID-19 and of COVID-19 vaccination on blood clotting events, including strokes, heart attacks and clots in the veins. These events include intracranial venous thrombosis, the rare type of blood clot identified as possibly associated with COVID-19 vaccination. The additional information that will become available through NHS Digital’s new primary care dataset will greatly improve the reliability of the findings from this vital research.”
Angela Coulter, patient representative of Health Data Research UK, said:
“Use of de-personalised data for planning and research offers huge benefits for patients if it is done in a trustworthy and secure manner with appropriate safeguards. Public oversight of the process is crucial, so I am pleased to hear that NHS Digital is committed to involving people in shaping developments in this area. I look forward to seeing outputs that lead to public benefit in terms of improved services and better health outcomes.”
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