The HRA is supporting the development of a network of NHS Secure Data Environments (SDEs) in England.
SDEs are data storage and access platforms, which uphold the highest standards of privacy and security of NHS health and social care data. For research purposes, the data has all personal details removed before it becomes accessible. There is also additional filtering or masking of certain information, for example, location data, to further reduce the risk of reidentifying someone.
The data cannot leave the environment. However, approved users can access it for research with approval by the SDE to answer questions that will improve health and care.
In the spirit of co-design, the HRA asked public contributors to join a group where they could give valuable insight into the design of the network and to lend a critical eye over some key areas of HRA governance involving data access policy and regulatory approvals.
Gemma Warren, Data and Artificial Intelligence Policy Manager at the HRA, is coordinating the group. Nick Filer is a public contributor and one of the co-chairs. They reflect on how members of the public are helping to keep the work on track and centred on issues that matter to people.
How has public involvement informed and influenced this work?
Nick Filer, public contributor and co-chairThe two public members, myself and Peter Staniczenko, take it in turns to chair. One person keeps the discussion focused and on-time. The other gets involved and promotes a public oriented perspective onto what is otherwise a very legal and governance focused group.
Trust and privacy are the big issues.
The public need to be assured that, while reuse of data about us can help improve health and treatments for everyone, our identities are masked or hidden to those accessing the data in a SDE. To maintain trust, individuals and members of sensitive groups need to have confidence that standards are in place to ensure that researchers cannot reidentify them. At the same time, it must be possible for those who originally collected the data to be able to later reidentify people using a unique code in the data. For example, where it is medically necessary or where research leads to new, possibly lifesaving or life-enhancing treatments suitable for them.
Gemma Warren, HRA Data and Artificial Intelligence Policy ManagerThe public voice is essential in all that the HRA does; an ever-present reminder that the patient and the public are at the centre of the work that we do. Our public contributors were essential for providing a perspective on what SDEs could mean for people. They told us when we needed to find simpler case studies and reminded us that certain terms needed to be explained or included in the glossary of terms we used in the group to ensure consistent discussion.
Working in this way has reinforced a message of co-design not only at this level, but across the programme.
What has gone well, and what hasn’t gone well?
Gemma Warren, HRA Data and Artificial Intelligence Policy ManagerThe topic can be very technical, which is a challenge. We were lucky to find some very engaged public contributors. We created a collaborative space and moved at pace through varied and difficult topics. But we know that conversations must go wider and we must speak to those without the level of understanding Nick and Peter have.
Nick Filer, public contributor and co-chairAs patient representatives, we are vastly outnumbered by experts working full time in research governance, privacy, or NHS health data management. At the start it was daunting as outsiders joining a team who at least seemed to know one another. The level of detailed knowledge distributed around the group was massive. But there were gaps where, as outside contributors, we could bring our lived experience and that of people we know to the foreground.
Time management is always a challenge. Sometimes you wonder if there is enough material scheduled for a meeting. And at others, you must curtail things as time runs out, or re-schedule further discussion for the future. Finish times are relatively sacrosanct except when they aren’t.
What have you learnt?
Nick Filer, public contributor and co-chairI have learned just how complex and difficult it is to explain SDEs. Yet they need to be explained to build and maintain public trust, and to progress research and innovation.
Gemma Warren, HRA Data and Artificial Intelligence Policy ManagerThe value of good public engagement should not be underestimated. We have unearthed issues that may have caused problems further down the line. It has also shown me the enormity of the task ahead and the need for more engagement as we move to new ways of working.