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 input throughout our research, from commissioning until 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 standards.

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're exploring

What do you understand by the term ethnicity?

What do you understand by the term race?

Should ethnicity, race or both be routinely collected in healthcare data?

How should race and ethnicity be categorised?

Should race and ethnicity categories be standardised across countries?

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

In an ideal world, what would be the best way to capture and categorise information on race and/or ethnicity?

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 group in research that benefits them. In the latter group of course, are women."