18 December 2024 | Kirsteen Campbell, Public Involvement and Communications Manager at UK Longitudinal Linkage Collaboration (UK LLC)
When I hit a snag at work, I might often say I need to consult ‘the hive mind’. This usually means chatting with colleagues who afford me some time to draw on their expertise while I mull over my current issue.
I see this primarily as a positive, but am mindful that I could be tapping into people who think and work similarly to myself. This could be considered a pitfall.
Where is the difference of opinion, will anyone disagree with my train of thought, is this version of the hive mind what I need, or is it what I want?
This is why I love my job. I get to meet and consult with people close to my area of work, and those who are some distance away. Recently I met with a group of people at a meeting facilitated by PEDRI who are not currently part of my day-to-day activity, but have a wealth of ideas that I, and we, can all benefit from.
The UK LLC team got together in October this year at We The Curious in Bristol.
New kids on the (PEDRI) block
UK LLC recently became a member of PEDRI. As the national Trusted Research Environment providing access to linked longitudinal data for the UK’s research community, we enable researchers to study de-identified Longitudinal Population Study participant data that is linked to participants’ health and non-health data.
A Longitudinal Population Study is a form of research where de-identified data about people with similar characteristics (e.g. same birth year, where they live, etc.) is monitored over time to see how different factors may affect their lives.
The public can view every application to access data held in the UK LLC Trusted Research Environment on our Data Use Register. We involve members of the public and study participants in the application process through our Data Access Public Review Panel, which I’ll share more about later in this blog.
Having created a Public Involvement Programme which has now been operational for three years, we’re keen to contribute our growing experience in this field. We also want to work with others and take a step back to see our public involvement activities in the context of the wider data research sector.
The groups, panels and committees that form the UK LLC Public Involvement Programme.
A ’roundtable’ meeting?
It can be tricky to navigate business jargon, so for the avoidance of doubt, a ‘roundtable’ meeting is where people meet and talk in conditions of equality. I suppose it’s related to imagery of a circular table where, unlike a rectangular table, there is no ‘priority’ seat at the top. All discussion is valued and welcome.
It was interesting to listen to the range of snap talks from the PEDRI members, representing data infrastructure, data providers, charities, NHS organisations and commercial organisations from across the UK’s four-nations.
As UK LLC, we’d been asked to share how we currently involve members of the public in applications submitted to us by researchers to access data for research (also known as ‘data access applications’). There were some similarities, or plans to introduce similar pathways for the public to have a role to play in whether or not applicants are permitted to access data for public benefit research.
How UK LLC involves the public in the data access process
Robin Flaig, Co-Director at UK LLC, talked to the group firstly about our overall data access process then in more detail about our Data Access Public Review Panel. This is a panel made up of a mix of Longitudinal Population Study participants and members of the public.
For us, this is an important element that sits across our entire Public Involvement Programme, as the data held in the UK LLC Trusted Research Environment is Longitudinal Population Study data. Representation is required from those whose de-identified data is being used for research.
Our Panel’s remit is to review all applications and comment specifically on the suitability and appropriateness of the applicant’s public involvement plans, lay summary and proposed public good. They have the opportunity to hear from applicants and ask questions about their proposed use of data.
As UK LLC transitions from being a COVID-specific research resource to enabling any research for public good, we’ll take time out to reflect on our processes, which will of course include input from our public contributors.
Robin Flaig, UK LLC Co-Director presenting at the 2024 International Population Data Linkage Network Conference, Chicago.
Good stuff, no surprises and a few ideas
This is all good stuff, everyone endorsed the view that it is essential to involve members of the public in our work, primarily to build trust and demonstrate transparency.
A range of approaches were being used, ranging from public representatives sitting on decision-making committees, to virtual meetings held between data access applicants and public contributors, to networks of public members who are offered regular opportunities to engage, support and guide data access applicants.
It was down to a mix of funding, time and expertise that limitations were set. Not a surprise, as anyone who conducts public involvement will be aware that to deliver a good, if not exemplary, standard of practice requires a decent investment.
Little things make BIG things happen
First meetings that bring together lots of different people with different perspectives, like this one, are hard. You’re trying to fit into something new, and immediate outcomes from discussions are not standard fare.
But little things make big things happen and this is what I think has happened here. The important thing is that people did come together, people did agree the public are a critical part of data access decision-making, people did share their views and people did come up with useful ideas.
This may be a ‘one-step for…’ moment, it may not be big but I’m confident that it’ll lead to big things happening.
Stay in the loop
If you are interested in getting involved in this work or finding out how it progresses, get in touch with PEDRI at contact@pedri.org.uk. You can also get updates on the regular PEDRI bulletin. Sign up now.
Representatives from the following organisations attended the roundtable: PEDRI (including a public partner), UK LLC, The Francis Crick Institute, Smart Data Foundry, British Heart Foundation Data Science Centre, Use My Data, Research Data Scotland, Honest Broker Service Northern Ireland, Public Health Scotland, NHS Health Research Authority, Health and Care Research Wales, Arcturis Data, Barts NHS Trust, Cancer Research UK, Health Data Research UK.
