Since we spent a long time honing a leaflet on what a PPI panel does I have copied the relevant bit from the Consumer Panel Membership Information Leaflet rather than trying to paraphrase it as I think it is quite succinct and clear about what PPI panels do.
‘ Consumer panel members work in partnership with researchers who are developing research ideas related to health and social care. This includes, for example, the development of new treatments and services related to specific illnesses or health related conditions.
The panels meet to discuss research ideas, research proposals, research funding applications and patient and public involvement in the research.
They provide researchers with feedback and comments from a cross-section of people. This feedback helps the researcher develop and design their research project, taking into account what people have said.
Panel members also help researchers to
- focus their research on issues that are important to people.
- produce information that will help people to understand the proposed research.
- design the way the research will be carried out to make it easy for people to take part in the research.
- make sure the research has the best possible outcomes that are relevant and offer direct benefits to patients or the public.
- help publicise the results and make change happen.’
My involvement in the project came about through my being a member of a PPI consumer panel. I was at the panel meeting at which Gemma presented the draft grant application proposal. At the end of the meeting I chatted to Gemma and expressed my interest in what she was planning to do as I am one of those people who is prescribed an unlicenced medicine so I have an added interest in the research.
After hearing what the panel members thought of the original proposal Gemma then sent a revised proposal to the Research Design Service of which the PPI panel is a part and they sent it out for comment. I replied to Gemma and the upshot was that she asked me if I would like to join the research team and I accepted.
I see my role within the team as being that of the ‘woman/man in the street’. I therefore read and consider everything from the context of:- is this understandable, easy to read, welcoming, non-threatening etc etc. It is so easy for those working in Universities to forget how daunting even a simple letter arriving in the post from someone you don’t know can be. Even more so if it is written in official sounding language with lots of logos on the page.
Modern technology has transformed life and It is very difficult for those under 40 to imagine growing up in a world without computers, mobile phones, e-mail, texts etc. The first mass-produced home computer did not appear until 1980 and even then it really did no more than allow you to play a very primitive bouncing ball game and then later pac man. The same applies to typing, until the 1980s this was all done on a dedicated typewriter. When word processors first came in they were seen as something different from a computer and it took quite a few years before it was recognised that the simple home computer could be used for many different things. Even as late as 1991 when my daughter was selecting her options for GCSE she wanted to do Information Technology but was told that she was too bright to need to do that !!! At the time I was a Citizens Advice Bureau manager and tried to explain to the school that knowing how to use a keyboard and input data would be invaluable for anyone going to university but I could not convince them and my daughter had to waste two years doing Business Studies instead!!!!
The point of my short history lesson is that it is often very difficult for researchers to remember that the people they want to attract to take part in their study may well not be comfortable with or even have access to any of the ‘new’ technologies. This is particularly important whenever there is a need to contact people direct. I see part of my role as making sure that any request for help or any information which is designed for general public release is as accessible as possible to as many people as possible. I think that researchers need to constantly revisit this and be prepared to use older and possibly slower methods to communicate. They also need to be guided by the people they are contacting as to how they wish this contact to happen.
There are many other areas where a PPI person can help to make research more valid and allow researchers to get more accurate results. Small things like providing tea and coffee at the start of any focus group meeting to allow people to relax, chat and feel wanted are very important. Explaining at the start of a session that there will be a microphone on the table and exactly what will happen to the recording is very important but if you do it too far in advance or make too big an issue of it then people may not turn up!
My reasons for becoming a PPI person are many and varied including:
- needing something interesting and challenging to do once I retired.
- wanting to feel useful.
- being interested in all things medical.
- having started out in research many years ago and being interested to see how it has changed.
- feeling strongly that research needs to be relevant, accessible and grounded.
- having done many things in my life which hopefully give me some insight into what helps people to respond.
- having been involved a lot in charities mainly to do with people experiencing problems in their lives so knowing how important research can be.
- being the main carer for several family members and friends, often having to battle to get appropriate help and support.
- needing to use my brain.
- always wanting to learn about new things.
I am finding the processes and hoops that researchers now have to jump through fascinating and totally frustrating. I do not think I would have the patience or commitment to do full time research in today’s world of burgeoning paperwork. I accept that sadly it is a sign of the times that today everyone seems to have to account for everything to everyone but in my opinion it is crippling research as so much time is now taken up with unproductive paperwork. The irony is that all the new technology was heralded as going to lead to a paperless society whereas the reality is the opposite.
There is a whole new breed of people involved between the actual research and the funder now that did not previously exist.
I greatly admire Gemma and Lindsay for their dedication and commitment and I am really looking forward to the time when they can actually start to carry out the research that I am so interested in. The journey so far has been fascinating and I’m sure it will continue to be. I am really enjoying the opportunity.