I really cant believe that on May 6th it will be 4 years since I was introduced to the research world and the concept of patient and public involvement. Its strange to think of life without it and I cant think of what I did with my spare time or down time- probably watch some rubbish on TV.
Reflecting back I never thought that PPI could involve so many different things and present so many different opportunities. When I first started out exploring PPI and getting tasks it was mainly reviewing lay summaries or patient information leaflets. I didn’t know if what I was doing was correct but I got asked to do more so I must have been doing something right.
Over time PPI has taken me in so many directions and to so many different places. It is the one aspect of my life that I know I will always have. I cant guarantee that I will have my job and be able to retire when I want to, I cant guarantee that I can be involved in Scotland Lacrosse and Capital for as long as I want. My health will no doubt dictate when I have to stop both of those (I am hoping there is a good many years left for both) but the one thing I will always be able to do no matter what is patient and public involvement. I really cant believe I had a life without it. It has given me so much and so many skills that I never would have had and those I did have I have been able to develop them.
I talk a lot about patient and public involvement in research but that is because I am so grateful for it and can see first hand the impact it has on research. I want to be able to give others the opportunity to benefit the way I have. You don’t just to have asthma, you can have any condition or not even have a condition but an interest in research and the research process. Being recognise not as a patient but as a colleague among researchers and seen as an equal.
For the first time recently I have been able to combine my experiences of PPI and lay summary reviewing with my work life as a nurse. I have had the chance to help design patient information leaflets to be used in renal. Having this chance I want to see if it is possible for more patients who I work with and look after to have the opportunities that I have had. I know it is not for everyone but there will be some who want that stimulation despite having their renal disease.
As my experience builds I have evolved from being that patient who does PPI to one who helps teach about PPI and help researchers find the best way to involve patients in their research, helping them work alongside patients to get the best possible outcome for their research and the condition they are focusing on.
My role has gone from being part of a group to helping set up groups, talking at conferences emphasising the importance of PPI in research and how to do it well and what to not do. It has also gone from speaking at courses on a local level to presenting on a global scale when I talk about my experiences of PPI on the Clinical Trials Masters run by the University of Edinburgh which is a distance learning course with students enrolling from Kenya, Asia and various other countries.
I have gained so many positive things from PPI that anyone else who is thinking about maybe getting involved I would certainly recommend it. For me it isn’t even taxing. I spend my days off attending different events and it doesn’t even feel like hard work, it comes easy to me and I really enjoy it- much like I used to enjoy playing sport of going to the gym. I get the same satisfaction doing PPI, I think because it is something that I can do and anyone can do no matter how physically unable you are to carry out work or have to be sitting not exerting yourself but are able to mentally challenge your brain and keep occupied.
The next few months are going to be busy with a trip to London to speak at a data funding call, going to Zurich with the European Lung Foundation, Glasgow for a nursing meeting and I am sure there will be other things filling up the diary soon.
ANONYMOUS-ASTHMA 