There is a saying surrounding the empowerment of those with disabilities that goes ‘Nothing for us, without us’.It is this simple motto that motivated me to volunteer for patient involvement in MS research. Over the past year, MS Ireland has presented me with several opportunities to get involved with current MS research both as a patient advisor and a participant.
Getting involved with research as a patient advisor ensures that the wishes of people with MS are incorporated into research study designs. This process involves consulting people with MS on the proposed research plans prior to the research taking place. This patient input helps ensure that the research objectives, and in turn, the research findings will be useful and relevant to the MS community. Furthermore, patient involvement helps guarantee that funding directed to towards MS research in utilized appropriately and to its fullest potential.
My experience of being both a patient advisor and a participant in various studies around MS has been overwhelmingly positive.
It has been a privilege to learn more about and get involved in current MS research which is directly relevant and potentially beneficial to me. It is paramount that the wishes and opinions of people with MS are respected when designing and carrying out research which directly concerns them. Given this, it has been reassuring to see how accepting, and considerate researchers in the studies I have been involved in have acted towards their participants lived experiences.
On a personal note, as I also come from a research background in my professional life, I have found it incredibly valuable to get involved in MS research from the perspective of a participant and patient advisor. It is based on both my professional background as a researcher and my personal experience of being a participant that I would encourage anyone with MS to get involved and have a say in current MS research.
In particular, as these projects are directly relevant to your life and could benefit the future of those living with MS. Further still, it is vital that a range of people with MS volunteer to get involved in research in order to ensure researchers have access patient advisors and participants which fairly represent all corners of the MS community.