I was recently interviewed as part of a study to evaluate the impact that patient and public involvement (PPI) has on research specifically within the Asthma UK Centre for Applied Research. Some of the questions made me reflect on my time with AUKCAR, how I got involved, what I enjoy doing, what I am not so keen on and what the positives have been. One question near the end of the interview was about retaining the PPI group, growing it and ensuring the longevity of PPI within the centre. I use my blog here as a way to talk about my life with uncontrolled asthma, the things it stops me doing, challenges I face but also the positive aspects of having uncontrolled asthma and the opportunities I have had which I would not have had if my asthma was run of the mill (it would be wonderful to have “normal” asthma and maybe one day soon).
I know some readers here will know what PPI is and may even be involved in AUKCAR already or other PPI groups but for those who are not I want to take the time to explain more about what PPI is, how to get involved in PPI and the real benefits to both the PPI member and also the researchers.
I could talk all day about PPI and how much I love doing it because it really has been life changing, but what is it? It is not payment protection insurance (which so many people think when they hear PPI), it is not sticking a patient on a trial steering group because a tick box says you have to, it is not to do the “right” thing so you get your grant for your study, it does not undermine research.
PPI is working with people who have or are affected by a condition to benefit research by keeping it appropriate to those with the condition. It means research is not just being done for research sake rather the end result will make a real difference to real people who currently struggle to live with a condition.
The benefits of PPI are multiple both for the patient being involved in PPI but also for the research and researcher. Personally PPI means a lot to me. It has taken what was a very negative and depressing situation and turned having asthma on its head and something positive has come out of it, from a selfish point of view it really has saved me, but then looking at the wider picture doing PPI has given researchers the chance to learn about the condition they are investigating. Not everyone doing health research has a health background and therefore don’t know the impact of having something like asthma on life but utilising PPI groups can help them understand and get the best possible outcome for their research and make it really beneficial.
Before I talk more which will probably be in another post I wanted to give readers the opportunity to ask me questions about PPI or AUKCAR, which I can then answer publicly here on my blog, it can be any question at all because if you are thinking about it there will no doubt be someone else out there thinking it to.
Please ask away!!!
ANONYMOUS-ASTHMA 