arronlacey
commented
1 year ago I've had a first pass at this - source doc on Hackmd here
SATRE Collaboration Café 15th June: Patient and Public Involvement and Engagement of Trusted Research Environments
At our recent Collaboration Café on the 15th June, we invited members of the SATRE Community to consider the role of Patient Public Involvement and Engagement (PPIE) in the building and utilization of Trusted Research Environments (TREs). Community members shared diverse perspectives and shared experiences of PPIE in the governance of TREs, in which the main themes are summarised below:
Public Sharing of Research Projects
The Collaboration Café concluded with a recommendation that research projects conducted within TREs should be publicly shared through various means such as TRE websites or annual reports. Participants pointed out that this initiative promotes transparency and provides the public with an understanding of ongoing research, thereby fostering trust. Some participants even expressed their willingness to share a list of running projects, albeit anonymized to maintain privacy and protect the integrity of the data.
Public Inclusion in the Approvals Process
One of the recommendations was to involve the public in the approval processes of TREs. This could be accomplished via a public panel or by including members of the public on an existing approvals panel. Involving the public ensures the decisions made within the TRE align with public interest and further augments trust. Some participants mentioned ongoing efforts to establish such public involvement in their approvals processes.
Ensuring Representative and Inclusive Public Engagement Activities
Participants emphasized the importance of ensuring that all public engagement activities are representative and inclusive. Best practices such as PEDRI should be utilized to ensure a representative sample and accessibility. Transparency and inclusivity enable a wider range of views to be considered, thereby enriching the design and use of TREs. However, participants also discussed the challenge of communicating complex TRE-related information to the public, emphasizing the need for clear explanation materials to avoid confusion.
A Focus on Public Trust
A string theme from the discussions was the prioritization of public trust. To uphold this trust, organizations operating TREs must have public consultation procedures in place. This helps establish a two-way dialogue with the public, ensuring their concerns and views inform the design and use of TREs. We discussed that given how critical it is for the success of TREs to be lead by PPIE discussions, there was a suggestion for a national program to educate the public about TREs.
An interesting reccomendation that emerged was the development of an accreditation system that incorporates public trust considerations, such as a bronze, silver, gold standard, alongside the recognition of different TRE architectures for varying organizations.
Summmary
The Collaboration Café on PPIE allowed the SATRE Community to share knowledge and debate the best way to involve the public in the design and operation of TREs. The discussions highlighted the critical role of transparency and public trust in the effective implementation of TREs. The inclusion of PPIE in the standard architecture for TREs was generally supported, and these considerations will be taken into account as we move forward with the SATRE project.
The SATRE Community is currently writing up these discussions as reccomendations in the SATRE Specification Document. If you would like to contribute to SATRE, please find out more at our recent blog post on how you can get involved. Thank you to SATRE Community members for being able to contribute so far!
Summary of issue
Summary of issue
Write up a blog post to be posted on the SATRE Medium Page that summarises ideas and GH Issues that came from the Collab Cafe on 15th June.
What needs to be done?
Who can help?
Issue checklist
SATRE backlog (public)project board