How the HDR UK Public Advisory Board are driving involvement of patients and the public in data access processes

What is the Public Advisory Board?

HDR UK’s Public Advisory Board (PAB) is made up of members of the public with diverse backgrounds and health experiences, and a mutual interest in health data and its ethical and trustworthy use in research that can deliver real benefits to patients and the public. The PAB provides strategic advice on many elements of HDR UK’s work and help ensure the development and maintenance of public trust in data access and use. You can find out more here.

Patient and public involvement in data access processes – what is the current lie of the land?

In December 2020, we (PAB) decided a key priority was understanding how data access committees worked. We wanted to know more about their processes and how patients and the public were involved in this work across the different organisations who are part of the UK Health Data Research Alliance (‘the Alliance’). We focused on the Alliance as they are convened by HDR UK, and their aim is to establish best practice for the ethnical use of UK health data and research at scale.

This is a really important issue for public trust, as the question of who has access to health data is always a key topic in public discussions about data access and use. Approval processes have to be transparent, and the views and perspectives of those whose data is being used must be considered and reflected in decision making, so that patients and the public can have faith that the data from their health records are being used for the public good.

We started discussing the procedures we thought ought to be in place, but it was difficult to know where to begin as we had little idea of what different data custodians across the Alliance were currently doing. The first step was to gather information on how data access committees within the Alliance were currently operating.

A small group of PAB members, with input from the wider Board, worked to draw up a questionnaire on current practices of Alliance members in order to understand:

• How patient and public representatives are involved in reviewing data access requests
• What criteria data custodians use to assess data access requests with regards to public benefit, privacy and patient and public involvement
• How data custodians monitor the use of health data and share information about research enabled through access to health data

What did we find out?

The survey went to the 45 members of the Alliance in February 2021, and the responses revealed a wide range of approaches to public involvement. Some had full involvement of public contributors in decisions about data access, whilst others had no public involvement at all. The survey revealed many missed opportunities to inform and involve the public about policies in relation to health data use, and a lack of consistency in how data access requests are assessed and publicised across the Alliance. On the plus side, we did find a few excellent examples of public involvement and transparency.

It was clear to us, on analysing the responses, that many data custodians were at an early stage in developing their data access processes. So, while the results were a little disappointing, we could also see that we had an excellent opportunity to support them and make suggestions to help improve transparency.

What did we do?

Our next step was to put together a set of recommendations for the UK Health Data Research Alliance members on building trust in data access through patient and public involvement in governance. Three PAB members drafted this report and discussed it with the wider Public Advisory  Board and HDR UK staff before developing a final version. We acknowledged that public involvement in Data Access Committees is in its early stages for many organisations and offered our support to help them move towards a more consistent approach across all member organisations.

Our recommendations were presented to the Alliance Board in July 2021, and centred on:

• The involvement of a diverse range of patients and public representatives in Alliance Data Access Committees, including involvement in development of procedures for assessing applications
• The involvement of the patients and public representatives on the Data Access Committees in reviewing data access requests, particularly those that involve personal and/or sensitive data
• Monitoring of data use to make sure that researchers are using the data in the approved way and ensuring that custodians provide clear and accessible Data Use Registers so that members of the public can see how and why health data is being used

What impact did we have?

We were delighted to hear that the Alliance welcomed our recommendations and published a response in full support of working towards them, alongside a commitment to repeating our original  survey in 2022 to track progress. We also received excellent feedback from the National Data Guardian who noted that they would be referencing our recommendations in their forthcoming guidance.

We’re now looking forward to working with the Alliance on a shared learning event to identify and promote good practice and find ways to move towards the recommendations we have outlined. We hope to invite both Alliance members and wider organisations to attend.

Reflections

Developing the survey and report has been a great learning curve for us. Many different people, both PAB members and HDR UK staff, got involved and the resulting discussions really sharpened our thinking and helped us produce better, more focused recommendations for the Alliance.

We are hoping to see an uplift in public trust in the use of health data for research as Alliance members work towards implementing our recommendations.  Quite how this can be measured is yet to be determined, but this will be another interesting question for PAB members to get their teeth into.

There is always a danger with groups such as the Public Advisory Board that they turn into a talking shop (which has value but a very nebulous impact) or are kept so busy responding to requests for input that they never find the time to push their own priorities forward. Producing the survey and recommendations, and getting such a positive response, has set a valuable precedent for PAB members.

We remain firmly committed to the principles of co-production and transparency and this experience has strengthened our confidence that we will get a fair hearing from the data research community when we speak out.