Our Patient and Public Involvement (PPI) Forum lead gave a short course on what PPI is and how to use it in research as well as the benefits of using PPI which is often a forgotten entity in the research process. I was observing this course and chipping in periodically along with one of the other PPI leads which I think benefited the participants as they could see just how PPI can be used from our point of view and what we actually do.
During the morning I realised I have talked about my involvement with the AUK Centre for Applied Research (AUKCAR) but never really gone into detail about what I do and what PPI is. Many people look at me quizzically when I say I do PPI as they assume is it payment protection insurance which it is not!!!
PPI is not a way of recruiting participants for your research. PPI is there to be involved in your research. We can help determine research questions and if they are appropriate for the specific condition. In my case Asthma. As part of PPI I review research summaries which have been written for the lay person- to weed out those scientific terms which creep in and suggest plain english terms to be used instead. I have also provided feedback on patient information sheets to make sure the participants will full understand all aspects of the research and the requirements of them. These are often the bit parts you can be involved in.
As part of PPI I also sit on a patient advisory group for a study which we provide feedback throughout the whole research process from applying for ethics approval to the dissemination of the results 3 years later.
The list is almost endless about all the different things I can do and it is very difficult to say no to certain things. It is not feasible to help out on all the projects which you are asked to do. This is particularly hard when it is an area so close to your heart. Asthma has effected me throughout my life, dictated not only what I do but sometimes what my family and friends do as well. Having the opportunity to be part of something which will perhaps make a difference and mean change can be made in asthma care, treatment, management resulting in no one having to go through some of the stuff I have been through. Knowing that this could potentially happen is such a rewarding feeling.
Today the lead mentioned how I do do a lot and need to be reined in sometimes but being involved in PPI has given me something so valuable and came at a time where I thought my career was potentially over, I was in a pretty bad place mentally and could see no way out. To me asthma had taken control of my life and I could find no way out of it. To some extent it still does have control over what I do and when I do it but I can change this from a negative to a positive experience. Being part of PPI gives me a purpose. When I am not working I am not sitting wondering what I would normally be doing but I can sit and read research or see what is going on in the centre. The advantage doing PPI with the centre is that much of it is done in my own time. During the sleepless nights when I am needing my nebuliser I can do some PPI work and read lay summaries and comment on them. I don’t need to try and fill the time with watching rubbish on the TV.
In the centre I am not the only one effected by asthma. All the PPI leads have different reasons for working with the centre and have had their life impacted by asthma in some way wether they have it, family members have it, family members have sadly died from it, there are a huge variety of reasons, but for me I am just now being effected by it and sharing my experiences I am living through just now as a result of asthma.
If I could do more I probably would. Often people ask if there is an incentive for being part of PPI and there is a huge incentive for me. Its about making change. Without the centre change would not happen and PPI can help by ensuring that the research done is the most applicable research for people with asthma and those effected by it.
I love doing it. It has given me a purpose again since having to give up so much. I am not sure what I would be doing if I was not involved in the centre. Probably wallowing in self pity about how unfair life is.
Today I also met a researcher involved in renal research so hopefully I will be able to bring some of my PPI experience to work and help the researchers there use PPI effectively!