Carmel Geoghegan shares her perspective on Public Patient Involvement in dementia research, from a carer/supporter's perspective For many years now I have been privileged to be involved in some really ground-breaking research projects, but I have also experienced tokenistic Public Patient Involvement (PPI), which is still very evident at some levels of research. It takes time to build relationships, confidence and trust. Like any experience as human beings, we want to be valued, respected and our contributions included. Recently I was invited by Joint Programme – Neurodegenerative Disease Research (JPND) to sit on two panels at their JPND/JPco-fuND2 Midterm Symposium 2022, in Brussels. It was exciting to be out, meeting people face-to-face again, but most of all it was such a great acknowledgement of how PPI is being included and of the fact that the people taking part in PPI are starting to be recognised as equal partners at the table. This was a great opportunity to meet researchers and to have a voice in this sector. My first Panel was on "Health and Social Care" and involved some amazing projects. All of the projects included some PPI aspects, with one particular stand-out example, for its true appreciation of the importance of PPI. This project involves paid PPI representatives as part of its team. This has been a very emotive issue for many years now, as PPI representatives are often the only people at the table not getting any form of remuneration.
My second panel was "Pathway Analysis", which proved very interesting but also very disappointing, as several projects had no PPI at all, while another considered one meeting to be sufficient involvement, and only one had true, meaningful engagement with PPI. I feel that this area has some way to go, to appropriately acknowledge the value we as individuals bring to research, and to appreciate the contributions we make. Our life experience of living with various life-limiting illnesses cannot be ignored. Going forward, adaptability is very important and hopefully, with events like this Symposium, our potential will continue to be showcased and people will see that civil society and researchers can complement one another. Informed research must be influenced by patients and patient advocates. Engagement should be systematic, should remove jargon, share findings and keep updating all those involved. We are happy to collaborate with any researchers and to work as equal partners, to improve the quality and reliability of research in the future. Health is everyone’s problem!