Working Group: Citizen Agency & Extending control#

Chair: Pete Barnsley

Notes#

Focussed on Citizen Agency topic

  • There is a forthcoming Research Equity initiative working with Oxford in partnership.

  • People need to be an active partners. Representativeness is needed.

  • Data space needs to be more in the spotlight for equity as it is not been a focus really.

  • Rebel Health: a book (released ~Feb 2024) about people’s fight to get access to data to help their health: https://susannahfox.com/rebel-health/

  • To identify people that represent the four types of person so all types of folk are represented. Also who are most likely to gain and so get more connection to wider public.

  • We want more people to see how the social contract is a key part of the role of “TRE / SDEs” and the research they support.

  • From the ability to provide a “lay summary” of the research project to recognising the voice of the “owner” of the data in deciding what and who can use their data.

  • Involving people in bodies is one approach of getting voices heard, e.g. PIER - Patient Involved Enhancing Research

  • A one pager to send to them, to help bring people into the WG.

  • Talked about the services connecting people and the research using their data.

  • Bio Resource: https://bioresource.nihr.ac.uk/participants/bioresource-portal/