Patient and Public Involvement and Engagement

One of the priorities of the STANDING together project is to ensure the diverse voices of minoritised populations are heard. We have woven Patient and Public Involvement and Engagement (PPIE) input throughout our research, from commissioning to dissemination. The PPIE subcommittee meets quarterly to share and reflect upon their unique personal lived experiences. The subcommittee provides essential strategic direction to the project and is instrumental in co-designing the proposed recommendations. We have also built an international community to gain insights from around the world.

The role of PPIE in STANDING Together

Diagram of people standing together, with surrounding text bubbles saying: moral and ethical advice, representing the public, lived experience, project development, hold the research team to account

Themes we've explored

What do you understand by the terms  race and ethnicity?

What do you understand by the terms sex and gender?

How would you feel if an AI health technology performed differently for different people?

How are health datasets curated?

Would you be happy for AI to be used in your care?

What do you think of the ONS ethnicity categories for the UK?

What is a Delphi survey and how is it used in this project?

Patient partner feedback

"As an ethnic minority individual, I feel that the project team is always there for me and were I to encounter any distress as a result of the discussions about “othering” or exclusion of ethnic minorities [...] I know I can turn to the project team for support."

"At every stage the project leads ask us of our opinion and are working with us not dictating or leading on their own. It is a true partnership."

"I would say that this is one of the most rewarding projects I have worked on, because it incorporates not only my great interest in the use of accurate validated data and interest in good documentation to assist the process of discovery, but also the pressing need to involve minority and underserved groups in research that benefits them."