This morning I had the honour of presenting to the PPI Ignite PPI Annual Conference. As the first speaker at the meeting I wanted to share how I see Patient Involvement in research. 17 years ago I tried to get the Irish government to trial a medicine which I have found works well at treating my MS. I even spoke to the Minister for Health. Nothing happened and I then shared how now I am better equipped to try again. This is because I have direct experience of being part of a trial, and I am now a Patient Expert, trained by EUPATI.
Having an illness like Secondary Progressive MS, which takes away so much of someones physical and mental ability is hard. There have been days when I have felt useless, unnecessary and unwanted. These were tough days. Now, because I am sharing my lived experience of this illness, my world has turned around. It gives me a focus away from myself. Not only that but my input is having an effect.
Patient Involvement is often a box ticking exercise with little concern about the contribution we can make. My experience with the COB-MS trial and Roche has shown me how powerful it can be if the patient is included from the start. Now I want to share this with the world. By using the resources which patients can provide, research will be more efficient, less costly and most importantly more suitable for the patient. Improving our Quality of Life.
I have written before how Advocacy has given me purpose in life. Now I would like other people experience a similar positive experience. There are so many ways to be involved. You could contribute on an advisory panel, or eventually become a researcher. The scope is vast. The great thing is you do not have to have any extra skills. You just need to want to share the impact of your illness on your own life. We are experts in our own illnesses.
