29 Sep 2020

The research team (who lead palliative and end of life care research at ARC South London) held focus groups and interviews with both public members and researchers, they found that patient and public involvement in palliative care research requires a focus on:

  • Building and maintaining relationships, with careful consideration of emotional support when broaching sensitive topics
  • The ability to work flexibly with people living in complex and unpredictable circumstances
  • An emphasis on involving people with diverse experiences relevant to the specific research project
(L-R) Halle Johnson, research projects and coordination assistant and Margaret Ogden.

Halle Johnson, research projects and coordination assistant (pictured left) worked with PPI representative Margaret Ogden (pictured right) who co-led on the evaluation. Margaret Ogden highlighted how a co-produced approach ensured that the findings were not limited to a researcher perspective. Reflecting on her involvement throughout the project she said:

This was a valuable PPI experience for me, and I felt included throughout. I must express my thanks to the PPI representatives who were initially involved – this set the scene and meant that I could take the evaluation forward, including the thematic analysis with appropriate training.

As well as the evaluation itself, I was given the opportunity to present the findings to an audience of PPI members and researchers. One of my most recent accolades was being described as a qualitative researcher. I feel I have crossed a line - all because the team had faith in me and were prepared to offer a unique involvement opportunity. I am truly grateful.

Margaret Ogden, patient and public involvement representative

Margaret Ogden

The full paper can be accessed via: https://doi.org/10.1177/0269216320956819