Community-based efforts and collaborations in public involvement and engagement#
Chairs: Tudor Besleaga (Sector Health Ltd), Claire Macdonald (Manchester University NHS Foundation Trust)
Goldacre Review - Chapter 5 Information Governance, Ethics and Participation
The need to conduct PPIE is well-recognised by the health research community at large, but how can we run it effectively? There will be a brief presentation on public expectations from using personal health data for research.
Which TREs are carrying public engagement currently? (dedicated person or additional responsibilities)
How many community members require PPIE support? Enough for a working group?
How to overcome health / tech literacy limitations during public engagement activities?
Public involvement - web landing page for public? Curated newsletter?
This session was a broad exploration of how the public can better engage with both TRE teams and the UK TRE Community.
Next steps focused on encouraging those working within PPIE spaces to join the UK TRE community.
Who is doing PPIE work in TREs - is it dedicated roles or additional work to other jobs?
What support would be useful for people within TREs and researchers with regard to PPIE
Is a survey needed to find this information or does this info already exist in previous landscape surveys e.g. PEDRI or DARE UK?
Routes for the public to engage - a landing page or signpost to on TRE Community?
Are there any general Public-requirements for TREs? build upon section 4.8 in https://satre-specification.readthedocs.io/en/v1.0.0/pillars/supporting.html
How TREs track and communicate data used - beyond just project info? Can patients find out what data is used?
Discussion around opt out and impact on data of who it is
How many PPIE professionals or people with PPIE as a priority joining the TRE Community sessions and mailing list?
Discuss TRE Community at next PEDRI Delivery Group meeting and make sure updates and opportunities are communicated to TRE Comm network. PEDRI currently planning their focus for next year
Explore PPIE support opportunities in bringing agency to the citizen
Encourage PPIE roles from TREs to join TRE Community