In May, more than 35 representatives from 17 DARE UK Community Groups came together in Edinburgh for the inaugural DARE UK Community Groups annual event.
Bringing together people from across the UK sensitive data research community, the event provided a valuable opportunity to connect in person, share experiences, celebrate achievements, and explore how these communities can continue to grow their impact.
The gathering marked an important milestone for DARE UK’s community-building programme, which supports collaborative, community-led groups working on shared challenges and opportunities across the UK Trusted Research Environment (TRE) and sensitive data research landscape.
A growing community
Since launching, the DARE UK Community Groups programme has funded or endorsed 19 groups, bringing together researchers, technical specialists, information governance professionals, and public contributors from across the four UK nations.
The groups cover a wide range of topics, from data linkage, governance, and technical standards to synthetic data, public involvement and engagement, and capacity building. Some, such as the UK Data Linkage Community, SATRE, SAFETEXT, PEDRI and the Synthetic Data Adoption Community Group, focus on specific challenges facing the research ecosystem. Other groups provide broader spaces for knowledge exchange, collaboration, and identifying future priorities.
Together, they are helping to develop practical outputs including guidance, standards, frameworks, toolkits, training resources, and communities of practice that support the trustworthy use of sensitive data for the public good.
Learning from each other
A consistent theme throughout the Edinburgh event was the value of bringing people together across community boundaries.
Participants shared updates on their work, explored common challenges, and identified new opportunities for collaboration. Several groups have already begun planning joint activities as a direct result of conversations at the event.
Two group members reflected:
“It was a great opportunity to network with some of the other community groups and identify potential collaborations. There’s definitely a lot of scope to work with other groups on some shared challenges.” – The Synthetic Data Adoption Community Group
“The presentations gave a good overview of the diversity of group aims, and I found it very useful being able to discuss and consider different approaches. – PEDRI Learning and Development Working Group
Another group noted how the event quickly translated into action:
“The annual event was an opportunity to learn first-hand from other groups and identify areas for collaboration. This has resulted in us planning joint seminars for autumn with the SAFETEXT group.” – UK TRE Community – Information Governance Group
These examples highlighted one of the greatest strengths of the community-building programme: creating spaces where expertise from different disciplines can come together to tackle shared challenges.
Roses, buds and thorns
As part of the event, participants took part in a facilitated Rose, Bud, Thorn exercise to reflect on the current state of the DARE UK Community Groups initiative and identify priorities for the future.
Roses: What’s working well?
The strongest positive feedback centred on collaboration and relationships.
Participants highlighted the diversity of expertise across the network and the willingness of groups to learn from one another. Many noted that the community-building programme has created valuable opportunities to connect people who may not otherwise have had the chance to work together.
There was also recognition of the programme’s community-led approach. Rather than being driven from the centre, priorities and outputs are shaped by the communities themselves. The co-chairing model, which includes public representation within leadership teams, was highlighted as an important mechanism for ensuring a broad range of perspectives are reflected in decision-making.
The impact of this work is increasingly visible through the practical resources being produced by communities, including standards, governance frameworks, training materials, guidance and toolkits that are supporting organisations across the sensitive data research ecosystem.
Buds: Opportunities for growth
While participants celebrated the programme’s successes, they also identified opportunities to build on existing strengths.
A recurring theme was increasing the visibility and reach of community-led outputs. Members recognised the value of the work being developed and expressed a desire to see successful ideas, standards and recommendations adopted more widely across the research landscape.
There was also strong support for broadening participation, both in terms of sectors represented and the voices involved. Participants discussed opportunities to engage communities beyond health data research, strengthen involvement from public contributors, and create more opportunities for public members to connect and learn from one another across groups.
Improving awareness of activity across the wider community was another important area for development. As the programme continues to grow, helping groups discover related work and identify opportunities for collaboration will become increasingly important.
Thorns: Challenges to address
Alongside these opportunities, participants highlighted some shared challenges.
Many groups rely on members contributing alongside their day-to-day roles, making capacity and sustainability ongoing considerations. Maintaining momentum, supporting leadership teams, and ensuring the long-term viability of communities can be challenging when much of the work is community-led.
Participants also discussed the importance of supporting meaningful public involvement and engagement. Effective participation requires time, resources, and opportunities for contributors to feel confident, supported and able to influence discussions. Several groups highlighted a desire to further strengthen public involvement throughout the lifecycle of community activities.
Finally, there was recognition that while many communities have successfully produced recommendations and frameworks, additional support is often needed to help organisations move from guidance to implementation.
Looking ahead: Turning feedback into action
The DARE UK Community Groups annual event demonstrated just how much can be achieved when people from different disciplines, sectors and backgrounds come together around shared goals. The conversations in Edinburgh reinforced the importance of community-led innovation and highlighted a strong appetite for even greater connectivity across the network.
In response to feedback from the event, DARE UK has already introduced a dedicated mailing list to improve communication, increase awareness of activities, and create more opportunities for collaboration across the groups. The DARE UK website is also being enhanced, with improvements to the user journey and signposting to community group resources, helping members and newcomers better navigate the growing ecosystem.
Looking ahead, plans for a Community Groups Showcase event in 2027 are being explored. The event will aim to create opportunities for groups to present their work, share resources, demonstrate outputs, build new connections, and explore future collaborations. It will also celebrate the significant contributions made by community co-chairs and members who have helped to drive the programme forward.
As DARE UK continues to evolve, communities will continue to play a vital role in shaping standards, sharing expertise, and building the trusted relationships needed to support a trustworthy, innovative and collaborative UK sensitive data research ecosystem.
To learn more about DARE UK Community Groups, explore current activities, and find opportunities to get involved, visit the DARE UK Community Hub and subscribe to the DARE UK Community Round-Up.