Providing safe and ethical access to health data at scale – across the UK – to researchers and innovators is fundamental to improving public health, and to support the development of new technologies and treatments that will improve the quality and safety of health care. The UK has already seen numerous important advances in health and care resulting from research using health data. Examples include identifying the link between smoking and lung cancer, reducing blindness and amputations for people with diabetes, and the realisation that previous tests in people attending hospital with sudden chest pain had been under-diagnosing heart attacks in women, and contributing to gender-inequalities in the treatment.
The acquisition and use of NHS patient data by pharmaceutical and technology companies has been the focus of some recent stories in the national press. At Health Data Research UK, we believe that transparency on how and why health data is accessed and used for research is essential and that the benefits for patients and the NHS are clear.
In our quest to develop a trustworthy approach, we are leading a £37.5 million initiative, funded by the Government’s Industrial Strategy Challenge Fund. This programme, working in partnership with NHS, charities, industry and public representatives, is supporting the development of a well-engineered, consensual, safe and transparent system for the use of health data for research and innovation for the public good. As our colleagues at Understanding Patient Data state, “In a trustworthy system, people’s privacy and rights don’t need to be sacrificed for data science and innovation.”
Progress we have made in the last 12 months towards this aim includes:
- Guided by input from patients, the public and regulators – we are steered by our Public Advisory Board and other patient advisors to ensure that any decisions on how data is used will always put patient and NHS benefits first. We work in partnership with colleagues at the Information Commissioners Office, National Data Guardian and the Health Research Authority who are guiding our work. This will improve the design of a system in the public interest.
- Creating the Health Data Research Innovation Gateway – healthdatagateway.org – a portal to enable researchers and innovators to discover “who has what” – specifically which datasets are held by individual healthcare and research organisations across the UK. The first phase of the Gateway went live in January and, in the future, the Gateway will provide information on the how datasets are accessed and for what purpose. This will improve transparency.
- Growing the UK Health Data Research Alliance – ukhealthdata.org – an independent alliance of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale. 27 organisations have joined so far, representing NHS trusts, medical research charities and research institutes. This will improve consistency on how data are safeguarded and accessed.
- Establishing principles for safe use of data – all organisations working with Health Data Research UK sign up to our ‘Principles for Participation’ to 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. This will ensure privacy and the ability to audit how data are being used.
- Developing guidance for ‘trusted’ or ‘trustworthy’ research environments – we are developing guidance that will recommend that research on health data is undertaken in what’s known as a Trusted Research Environment or Safe Haven, rather than having data travel from the data controller to the data user. This will improve security.
There is still much to do, but we are committed to working in partnership with patients and the public to create a step change in how we harness health data for public benefit. All developments will be posted on our website at www.hdruk.ac.uk and you can sign up to our monthly newsletter here.
Want to get involved?
Please email us at firstname.lastname@example.org if you would like to get involved in any of these initiatives. If you would like to participate in the workstream on Trusted Research Environments, there is an initial workshop on 12 March 2020, please do email us and let us know if you would like to participate.
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