‘A four year diagnostic odyssey before being diagnosed with a rare auto immune disease prompted my interest in Patient and Public Involvement (PPI) in research, so I was chuffed to be invited to become a panel member for a session discussing PPI at the recent Rare Disease Research UK Conference in Newcastle.

I have had the privilege of working with multiple academics, institutions and organisations, as well as co-producing research and working as a patient/peer researcher. In the session I highlighted that, for me, PPI is built on developing trusting relationships, having honest conversations and meaningful collaboration. It’s as much as state of “being”, working in a values and principles led way, as “doing”- the methods used to involve people. There is emotional labour involved for both researchers and public contributors and it can impact on people’s identity. We become involved because of our lived experience, our aim is to help the research process to ensure research meets people’s needs.  If the people involved in research didn’t feel that their unique experiences and expertise could help researchers they wouldn’t waste their time as research is too important. PPI can’t thrive without reflexivity, that is understanding how our life experiences, assumptions, biases and values can impact on the way we work together. It requires us to embrace “productive tensions” and have an understanding of how academic culture and power imbalances can impact on the way we work together in partnership.

I have embraced the joys and challenges of PPI because fundamentally research is hope to people like me who live with rare, poorly understood and treated diseases.’