Science Meets Lived Experience: Patients Shaping Health Research in Ireland
In this interview, we speak with Jim, a retired project manager from County Kildare who is now a dedicated Public and Patient Involvement (PPI) contributor. With a long-standing commitment to volunteering, he first encountered PPI through a hospital poster in 2020. Since then, he has become an active voice in a wide range of research initiatives, from cancer studies to national health data projects. Here, he shares how his personal experiences have shaped his involvement, the impact he’s made, and why he believes PPI is essential to research.
Getting Involved in PPI
I live in county Kildare with my wife, our 4 children are all (thankfully!) raised and left home — 2 in Ireland and 2 abroad. I worked as a Project Manager in the public service for 35 years and took early retirement in 2010 in my mid-50s. I became interested in PPI in 2020. I was being treated for cancer at the time and saw a poster in the hospital reception area while waiting for radiotherapy. I had always been active in voluntary and charitable organisations, so the concept of volunteering my time and energies was one I was comfortable with.
My PPI Contributions So Far
At first, my PPI contribution was in cancer-related projects. For the past 2 years, I've been a member of a PPI panel on the Irish Prostate Cancer Outcomes Research study, a large, longitudinal study which begins recruiting in 5 hospitals this year. My personal experience of prostate cancer and various treatments over 3 years was very relevant here. At the other end of the scale, I'm one of 3 PPI contributors working with a PhD researcher on a project investigating the anti-tumorigenic mechanisms of cannabinoids in prostate cancer.
Outside of cancer studies, I've worked on 2 Citizens' Juries with IPPOSI — as a member of the CJ on future use of Genomics in healthcare and as a member of the Oversight Committee for the CJ on future use of AI in healthcare. More recently I've joined the Steering Group for the Genome of Ireland project and 2 different groups in HIQA — HealthData@IE (establishment of HDAB and education and information campaign) and the STAKEholder project (development of clinical guidelines).
In a very different, but also very interesting and challenging area, I was appointed as a PPI member of the Health Research Consent Declaration Committee earlier this year, for a 3-year term. I had just completed an excellent training course in research ethics run by IPPOSI.
What the Experience Has Been Like
My involvement in PPI has been a very rewarding, interesting, and also challenging experience. Rewarding in the sense that I feel I've been able to harvest some good from my personal experience of diagnosis, treatment, and recovery and use this to contribute to a better future for others. Interesting, in the sense that I've found it fascinating to learn about the extent and scope of scientific research that is underway and developments in technology and use of data. The PPI role can be challenging also, but in a positive way — you need to be open-minded, alert and prepared for intellectual challenge. It's not only about commenting on patient-facing leaflets and documents — real PPI contribution should be much more intensive than that.
Why PPI Matters
PPI can make a real contribution to research, which is a very intensive and narrowly focused discipline. Timescales are often long and progress can be slow, dependent on funding, ethical approval, contracts etc. PPI contributors can bring objectivity and fresh thinking to a project at any stage — the earlier the better. Obviously, there is also the value of personal experience in specific areas. PPI can also help to ensure that research is relevant to real needs and has potential to add to the public good.
Advice for New PPI Contributors
My best advice to anyone considering getting involved in PPI would just be: “Go ahead, do it!” You can go at your own pace to suit your circumstances. It can be challenging but is also very rewarding, and you will learn lots!
Looking Ahead
For the future, I would hope that PPI will become so integral to research that it won't seem new or different anymore. It'll just be another essential component of good research.