My name is Dave Green and I’m a ‘PPI member’.
Now I admit that does sound like a confession to a self-help group, but it does reflect a degree of confusion. I’m also a public contributor, public researcher, public patient and carer representative and a citizen researcher, take your pick. This of course depends on the particular role you are undertaking, what it requires, what part of the NIHR you are in and who you are talking to. Whatever I am I enjoy the job and research has changed my life.
I joined a research team in 2008 and have continued as a member of three other research projects to date. My initial role was as part of the ThinkSAFE project with the Institute of Health and Society at Newcastle University. It focused on how in-patients in hospital could take ownership of their own safety. This was the first time the research team had been involved with PPI on such a detailed project and both were starting from scratch as far as PPI was concerned. It was this learning together attitude and the scientific approach to data which gave me the impetus to become more involved in research. It would be a decision I would never regret.
Research has taught me many things apart from maintaining an iron control of my bladder during three hour meetings. My previous occupation was in nursing, followed by a complete career change as a junior school teacher. I also spent some years in the Royal Air Force. I tell people I was a fast jet pilot, but I actually qualified as a state registered nurse and never got near a jet.
Research has given me a structure to organise my thoughts and opinions – a set of thinking tools. It has taught me things I should have worked out for myself long ago – that reason, logic and objective enquiry can be applied to life. A phrase I constantly hear in research is ‘…there is no evidence base for that’. This is now a thinking tool I use in everyday life. Research also proved a portal to other experiences.
I have given presentations at an INVOLVE conference in Birmingham and at away days organised by Newcastle University. At one presentation on innovative ways to involve PPI in research teams, I delivered my presentation to an audience of academics while I was dressed as a giant spider! I’ve run focus groups and interviewed research subjects, and learned to analyse data and comment on methodology. All excellent stuff for extending life skills.
It was through contacts on the research team that I was introduced to the Health Services and Delivery Research (HS&DR) Prioritisation Panel (researcher-led) and got to see how applications were forensically analysed.
Meanwhile at the first meeting of the former Sunderland PCT support group the chair asked each member of the public why they were there. Replies varied from ‘beating the drum for patients’, ‘keeping you lot (the PCT) in line’, to ‘pushing for more support for my local diabetic group’. What we all should have said was that we were there to work with the PCT to ensure better healthcare for the people of Newcastle.
I’ve been to London on numerous occasions to attend focus groups, away days, conferences and board meetings. It changed the city from a rather frightening place to enabling me to feel quite at home, although once I did get lost trying to find my way back to the station, but I don’t talk about that! Aside from politics I’m not normally a very passionate person but I am developing a passion about PPI. This led to me join the NIHR Public Involvement Virtual Network (PIVIN), where I’m among 15 members of the public working closely with researchers. I have contributed to drawing up a list of Top Tips for both PPI members and researchers and analysing leaflets and publications. I like to describe it as: “Nothing about us, without us.”
I’ve come to realise that patients and carers have just as much expertise in their own experience as methodologists and health economists. The peak of my self-development came when I attended a research meeting and realised that of the ten people there, apart from the admin assistant, all were either a professors or doctors. But I didn’t feel discomforted at all!
The one powerful message emerging from all this is that we must all, work together to make research better.
Simple, isn’t it?
*The NIHR recently launched the #twosides campaign urging people to actively get involved in health and social care research. Links are offered to enable people to share patient and carer experiences and ideas for making a difference to the health and well-being of families, friends, colleagues and communities.