Guest post by Will Dixon, Professor of Digital Epidemiology at the University of Manchester.
The UK provides a wonderful opportunity for health data research. The NHS provides universal access to healthcare, and information about the occurrence and progression of disease is held within electronic health records. These electronic records are in nearly all GP surgeries and have increasing uptake in hospitals. Analysis of this rich information can tell us a lot about health, disease and treatments, and answer important questions for patients. For example, which of the many drugs available for arthritis will be best for me? Will there be side effects if I take it long-term? What does the future hold for me given this new diagnosis? Analysis of the health records and experiences of lots of former patients like you can help answer these questions.
How health data is shared for research
The benefits of analysing de-identified health data are well-established. Because of this, the NHS Constitution provides a commitment to sharing de-identified health data beyond direct care for research. The volume of digital data is expanding and becoming increasingly connected, with forthcoming initiatives including the linkage of health data across regions and the closer alignment of health and social care data. Patient-generated data is also starting to be integrated into the NHS from apps and wearable devices. Linking this data together will provide a more complete picture of health and disease across different healthcare and community settings. And there are national networks of researchers with expertise in health data research. These researchers receive, analyse and interpret data held in trustworthy research environments, for the benefit of the population. The Office for Life Science and industry also recognise the importance and opportunity of this rich national asset.
The rules and governance around data sharing are also advancing. A report from the National Data Guardian in 2016 made it clear that de-identified data could be shared beyond direct care without consent, although opt-out recommendations were made for identifiable data. These recommendations are about to be implemented as the National Data Opt-Out Programme. The implications of this, as well as GDPR, have recently been reviewed by the King’s Fund. There are also new initiatives around the governance of digital data such as the establishment of a national Centre for Data Ethics and Innovation and the Nuffield Foundation’s Ada Lovelace Institution.
Why the public is losing trust
The public is generally supportive of sharing their de-identified health data for research and public benefit, as repeatedly seen in polls and citizens’ juries. Yet plans for expanding the breadth of health data made available for research can erode public trust, as seen with the care.data programme. Reasons included low public awareness of the benefits, poor understanding about the safeguards and purposes of sharing data, opaque opt-out systems and absent feedback about data usage. It is entirely understandable that the proposed sharing of sensitive health data can cause alarm if the processes are not effectively communicated. You do not know who will receive, or may in future receive, data about you; or how sharing that data contributes to public good.
Moving forwards and building trust
So if the rules state that de-identified health data can be used for research, yet the public lose trust in the systems and processes for sharing their sensitive data, how can we move forwards? Retaining public trust is essential as we endeavour to advance healthcare through the analysis of personal data for public benefit.
There are a few critical ingredients for success:
Clear communication of the benefits and managed risks of health data sharing
A joined-up system to help people easily state their sharing preferences where appropriate, guiding the flow of health data for clinical care and research
Feedback about data usage and the resultant benefits
Partnership with the public in developing solutions to this significant challenge
Implementing such a system is indeed complex. It requires us to think and work across disciplines. It will naturally require the input of experts in ethics and governance, clinical care, research, data science and of course patient involvement. But, more than that, it also requires expertise in thoughtful design and communication – to provide insight into not just how to develop effective and understandable two-way communication with the public, but also when, where, and supported by whom. Excellent progress has been made in communicating health data sharing by the Wellcome Trust’s Understanding Patient Data programme. Yet there is more to be done to build public trust, including improving how preferences for data sharing are collected and providing feedback to patients about the recipients of data about them and the resultant benefits of the research.
Sharing health data for research remains a vitally important opportunity for public benefit in the UK. Designing systems to support the trustworthy use of this data requires a thoughtful and multidisciplinary approach, but is achievable in the current landscape of data expansion, governance progress and the supporting infrastructure for research.