Join our patient and public involvement group

‘I’ve long been an admirer of P.G. Wodehouse, so much so that when occasionally faced with a mildly diverting question I’ve pondered upon “WWWD?” “What Would Wooster Do?”, and such an occasion arose some six years ago to ask this very thing.  There was I, standing in the glittering metal and glass concourse that only the best NHS PFI schemes could squeeze from the Treasury, to find my eyes resting on a leaflet asking if I would be interested in helping research.

“This can’t be right, Jeeves”, I said, “Here’s some cove asking for my opinion. No one ever asks for my opinion.  Aunt Agatha positively insists I keep my opinions to myself”. I read on, only to discover that the opinions of ordinary members of the public are genuinely welcomed by people wanting to do research to further the aims of medicine and surgery.  One coffee later had me signed up to a forum of PPI members, and I found myself in a community of like-minded people.  We all had our different stories to tell, but we all had one single thing in common.  We care passionately about furthering research, and we all have opinions.

It amazes me still how the diversity of public voice, enriched and gilded with real-life experience, can illumine the eyes and senses of medical research. We help researchers avoid making fundamental blunders, is the bottom line, and their gratitude is evident in that they keep coming back for more.

Now, six years down the road, I find myself on PPI panels across the country in a range of institutions. I’m involved jointly in everything from just exploring ideas to funding decisions.  It’s immensely rewarding, fulfilling, and I would recommend it to everyone young and old from every walk of life.  All our opinions matter, amazingly, and the opinions of ordinary people brings energy into the research discussion, so if you were in any doubt whether to become part of the PPI discussion doubt no more.  Go for it.’

‘I started PPI to give my life meaning after a long spell in hospital. I find PPI work rewarding as it allows me to put my personal experiences, knowledge and expertise to good use. I have only just started at the ICRF, but I look forward to contributing in any way I can.’

‘My background is in Scientific Research and I used to work for both Biochemistry at Cambridge University and in a tumour imaging laboratory at Cancer Research UK. I resigned from CRUK due to ill health after a diagnosis of Crohn’s Disease and Osteo-arthritis. One day travelling on a train between Norwich and Cambridge I met the manager of our local Norfolk based patient involvement group PPIRes and decided to join the panel. Over the last six years my patient involvement experience has “snowballed” and I am now a member of six national health research committees as a Lay Member including RfPB, NICE Technology Appraisal and the Health Technology Assessment Panel.

I enjoy taking part PPI research as I think the patients should be heard and listened to as this is research which effects them directly. As a scientist I know that academics often have a very focused view of research based on outcomes and scientific questions. As a patient involvement advocate I have the chance to influence current research and change the outcomes for patients. For me patient involvement has become a new career and a chance to influence research at a national level.

I tend to review documents for the ICRF by email as I am based in Norfolk but always look forward to hearing and becoming involved in new projects.’

‘I initially started doing patient and public involvement work as I myself have a number of long term health conditions and knew that at times the care I had received could have been much better and the same was true for many people I knew. It is this that continues to drive me to try and get health and social care the best it can be for everyone. If you like, a legacy for my god children and their peers.

I find the work rewarding as I see the views myself and others give make an impact on how research is shaped and allow us to use good or bad experiences to try and ensure the best for those to come. I enjoy learning and meeting new people and have become more confident and open to new things in all parts of my life.’

‘My involvement with the lay role in research began when I had a hip replacement operation. As part of the pre-op review there was a question asking whether I would get involved in post-op review of my experience. While doing that I was asked would I be interested in getting more involved in other types of research. (Slowly but surely I was being lured into the whole business) I contacted NIHR (as, yes it was them) and completed their list of topics I would be interested in contributing to. Once I had actually retired I did accept some reviewing and found it very interesting…and a great way of keeping my brain active, and feeling that I was making a worthwhile contribution.

The reasons above are obviously part of the reason I have become increasingly involved. I am now a lay reviewer for a number of charities as well as NIHR and your own organisation…I am even a co-applicant on one project I got involved in!! It uses the skills from my work life…I was a lecturer in an FE/HE college and taught research methods and supervised dissertations and since I had gone back to University for an MA Ed as a mature student I was still enthused about learning generally and didn’t want to let all that learning and experience just drift away. This job has provided me with the challenges and stimulation (without all the administration and meetings!!!) of my original workplace role; while giving me control over the amount of work I take on…the ideal work/life balance so to speak.

I am genuinely not sure how I originally got involved with this organisation.. I just clicked on one of the INVOLVE research opportunities I think…But I am very glad I did. This has been a very positive experience both in terms of the challenges it has delivered and the variety of the topics I have covered. The contacts I have made have been supportive and friendly and put up with my technological quirks and shortcomings. I look forward to continuing my association with this organisation for as long as my aging brain is able to contribute!!’