HIC support this Joint Statement from the Medical and Social Research Community

Combatting the COVID-19 pandemic has depended upon the ability to collect, link, access and use health data for research. It has allowed the NHS to identify and protect millions of people at high risk from COVID-19, to deliver and monitor the safety and effectiveness of the COVID-19 vaccination programme, and to identify life-saving treatments for COVID-19, including dexamethasone. These benefits must not stop with COVID-19. They must also extend to people living with other conditions such as mental illness, cancer, heart disease and diabetes.

As representatives of the UK’s medical and social research community, we support the goals of NHS Digital’s GP Data for Planning and Research (GPDPR) – an improved collection of primary care data from general practice systems. NHS Digital’s plans for making health data available for research are not new. NHS Digital has been collecting health data and enabling access by approved organisations for healthcare planning and research for public benefit for many years. What is new is the addition of GP data, which – as has been seen with COVID-19 – can support an even wider range of research to benefit patients.

We are therefore concerned to see the recent portrayal of this as a ‘data grab’. We believe that the trustworthy use of patient data for research that is in the public interest will enable better care, better treatments and better outcomes for the citizens of the UK.

Ensuring the confidence of GPs and patients is crucial and so we are pleased to see there will be more time taken to build transparency, clear communication and ongoing engagement, particularly around how the data will be accessed and commercial use. Whilst undertaking research involving health and social care data it is essential to demonstrate trustworthiness. The UK has expertise in applying safeguards in a scalable and verifiable way. This is exemplified through the UK Health Data Research Alliance’s leadership on Trusted Research Environments (TREs) centred on the “five safes framework”, data use registers, and meaningful public and patient engagement and involvement.

For those who do not wish their data to be included, the National Data Opt-out, which was developed with much consultation across the NHS over several years, provides an important way for people to opt-out of the wider use of their data across the whole NHS system, at any time. However, we hope that with better information on both the benefits and the safeguards of this improved approach, people will choose not to opt-out. It is vital that healthcare planning and research includes and represents all people so that we find treatments, improve care, and deliver positive outcomes for everyone.