The February meeting of Health Data Research UK’s Public Advisory Board was a lively affair.
Following an update from David Seymour, HDR UK’s Partnership Director, on the “Realising patient and NHS benefits from health and care data –from policy to practice” event held on 22 January 2020 in partnership with CASMI and the Academy of Medical Sciences (a full report of which is now available), our discussions focussed on the proposed commercial principles governing how the Health Data Research Hubs would interact with academia, industry and the public sector. We reflected on our own concerns about uses of health data and the large amount of public debate that has been had recently on the same subject, and agreed that transparency is paramount if HDR UK and the Hubs expect to earn and maintain public trust in this area.
We noted that the public engagement exercise on partnership models using NHS Data, run by Understanding Patient Data, was due to report very soon (recently published here) and agreed that this report would highlight public concerns around uses of data. We therefore focussed our discussion on ways in which HDR UK could add knowledge and expertise to the debate. We agreed that HDR UK could play a role in improving transparency by setting out, in an easy to understand format, the process involved when someone requests access to data via one of the Hubs. The hope being that this would help to reassure the public of the checks and balances in place to ensure that access is secure, and the intended uses of the data will benefit the public.
We agreed that it would also be helpful for the public to see more detail around the data access procedures, to see who is involved in the “data access committees” that receive access requests and which make the decisions. Seeing minutes of meetings of those data access committees will also help increase understanding of the grounds in which access is granted and also why it may be denied.
At present, there are many different data custodians in the NHS, each with its own process for data access requests, and they are not always consistent about how they make details of access requests available for the public to see. One of the aims of the UK Health Data Research Alliance is to standardise data access procedures as much as possible and also to standardise the degree of transparency around those procedures. We also see a role for Public Advisory Board members in liaising with the Hubs to ensure that their data access committees include members of the public so that the public is actively involved in decisions about access to health data. Through a continuing relationship with those committees, we can then offer support where needed and also help to ensure that the public remain informed about the potential impact of their data within the Hubs.
These are early days in the development of the Hubs but I was pleased to see the enthusiasm for transparency and trustworthy behaviours which were independently echoed by Hub representatives at an engagement workshop shortly after the Public Advisory Board meeting. I think I can speak for the whole Public Advisory Board when I say we are very much looking forward to working with the Hubs on addressing issues as they develop, and celebrating successes as they arise.
If you are based in Wales, Scotland or Northern Ireland and are interested in becoming a member of our Public Advisory Board, please click hereto view our current vacancy to find our more information. You can also contact our Public Engagement and Involvement Officer here for more information.
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