Empowering communities: How DARE UK is supporting community groups to transform sensitive data research

In this blog we discuss how the DARE UK community groups initiative has significantly advanced sensitive data research by fostering collaborative efforts that have formed new groups, developed essential tools and standards, and initiated valuable resource hubs.

When the DARE UK community groups initiative launched in April 2023, we described it as a programme of “collaborative, community-led initiatives highlighting the importance of working together towards common goals.” A year and one funding cycle later, the accomplishments of four pioneering DARE UK community groups are demonstrating the transformative power of community-led efforts. Supported by UK Research and Innovation (UKRI), the DARE UK community groups initiative has empowered these community groups to work towards a shared ambition—advancing sensitive data research for better outcomes.

The DARE UK community groups initiative was born out of the need to foster innovation, growth, and collaboration in the UK sensitive data research community. Through funding and endorsement, the initiative would support interest groups, working groups, and communities of practice to pursue various goals that align with the DARE UK vision. An open funding call made up to £40,000 available to new and existing community groups over a period of five months (November 2023 to April 2024), helping to address some of the resource constraints affecting their sustainability.

The funding call was designed to encourage diversity and inclusivity. Community groups were required to have co-chairs from multiple organisations and align their proposals with DARE UK’s strategic priorities, which include infrastructure technology, data standards, governance models, and public involvement and engagement (PIE). An assessment panel, including a public contributor, ensured the selection of proposals that not only aligned but resonated with public priorities.

Three interest groups and one working group emerged from the selection process:

Interest groups

UK TRE Community – Community Management and Engagement (Existing group)
Public Engagement and Data Research Initiative (PEDRI) (Existing group)
Statistical Disclosure Control – Reducing Barriers to Outputs from TREs (SDC-REBOOT) (New group)

Working group

AI Risk Evaluation Community Group (New group)

Key impacts and achievements

Despite the brief funding period, the impacts on and of the community groups have been profound:

Building and strengthening communities

Through engagement and outreach activities supported by DARE UK’s funding, the UK TRE Community, an interest group that was established in December 2022, has expanded significantly to around 100 organisations and more than 300 members as of June 2024. Additionally, the formation of more than six affiliated working groups focused on critical areas such as cybersecurity and sustainability of trusted research environments (TREs) highlights the appetite for community-driven innovation in the TRE community. PEDRI, another existing interest group, also experienced growth, having nearly doubled its partnership base from 9 to 15 partner organisations. This was achieved through consistent engagements across the PIE community enabled by funding from DARE UK.

DARE UK funding also supported the development of a strategic partnership between PEDRI and the UK Heatlh Data Research Alliance, which marked a significant step towards advancing PIE in data research and enhancing community impact. The partnership kicked off with an inaugural virtual meeting in December, the first of a series designed to discuss PIE priorities, streamline processes, promote best practices, and align with PEDRI’s strategic goals (Read the report). Following this, a second workshop in February featured speakers from PEDRI partner organisations sharing their public involvement initiatives. Based on feedback from the wider PIE network, the third workshop focused on underrepresented groups in research and the impact of public involvement.

This rapid growth in existing groups, alongside the formation of new ones, showcases our success in building vibrant communities that can motivate data research stakeholders to participate in transformative community-led efforts.

Securing community input and buy-in

Community input is important in co-developing and adopting new tools and standards, and the two new DARE UK community groups exemplified this. SDC-REBOOT’s engagements (workshops and retreats), enabled through DARE UK funding, facilitated feedback gathering among TREs (and secure data environments) on semi-automated output-checking tools, a challenging aspect of TRE operations. Similarly, the AI Risk Evaluation Community Group used their funding to engage stakeholders in a series of workshops, resulting in recommendations for training and releasing AI models from secure environments (Read the final report). These efforts ensure that new tools and standards are tailored to meet the needs of the data research community, promoting wider utility and adoption.

Promoting best practice in PIE

PEDRI made significant strides in promoting best practices in PIE. With support from DARE UK, workshops, community engagements and public consultations were held with key stakeholders to gain insights into the barriers and facilitators to adopting the PEDRI Best Practice standards (Read the standards). In addition to these strategic efforts, PEDRI started the process of rebranding and redesigning its website set to launch in October 2024. An essential tool on the PEDRI website will be a resource hub, also being explored by the UK TRE Community, to serve as a central knowledge repository, consolidating PIE resources across the data research community and preventing duplication of efforts. These achievements will benefit the community through improved PIE expertise and practice in the data research landscape.

Next steps

All four of the funded DARE UK community groups plan to focus on continued development and engagement. SDC-REBOOT will maintain quarterly meetings and further develop tools like SACRO, AISDC and DataSHIELD. DataSHIELD has committed to embedding SACRO’s statsbarn framework into its development roadmap, providing a use case to demonstrate how mature, pre-existing automated SDC tools can embed emerging SDC models from the SDC-REBOOT community. The group will also create policies for AI information governance and build expertise through a ‘Community of Experts’. PEDRI will refine best practice standards and continue developing its resource hub, with a focus on devising public engagement and national campaign strategies.

The UK TRE Community aims to enhance its outreach and engagement, bringing more players in the TRE space into the community to support working groups and co-develop a community resource hub. Lastly, the AI Risk Evaluation Community Group will disseminate their final report and continue work in assessing further risks in AI models such as bias, sustainability, transparency and more related issues to ensure models can be responsibly translated into the real-world from secure environments.

The DARE UK community groups initiative has shown that even modest funding can yield significant results. Through funding and coordination, the initiative has enabled the formation and growth of vibrant communities, secured crucial input for new tools and standards, and kickstarted the creation of valuable resource hubs. As these community groups continue to mature, they will form a critical mass of expertise, driving sustained innovation in the sensitive data research landscape. This initiative stands as a testament to the transformative power of community-driven approaches and the importance of supporting them.