Volunteer ..... You Are An Expert of You!

I know my body is unreliable, I can't count on it, so how can I expect to offer it up for

someone else to count on?  I am only going to speak of what I know, so when it came to volunteering, I started out small, it isn't about using your physical attributes and your unreliable body.  On the request of my rheumatologist to be involved in a study that involved filling out a questionnaire very early on in my treatment and would be ongoing until I withdrew.  She told me that it would not help me directly, but hopefully would help others, in time.  But it did help me because as time passed and I realized that what was in my brain was important in research and to other patients.  Since I was mentored by a wonderful patient when I was diagnosed, I felt that anything I could manage to do, to "Pay It Forward", I would try to help. 

I have learned that I have to be careful what I commit to, just as with anything else in our lives with RA, if I overcommit, I pay for it physically, I also never want to let anyone down just because my body is letting me down.  I started small, and 5 years after the first questionnaire at my rheumatologist, I'm amazed by the opportunities I have been given and the depth and breadth of what I can contribute.

 

You may already be contributing by supporting other patients via social media.  Research grants for studies are now given preference and also most times now MUST have a patient participation component.  This can include assisting in writing the grant, checking the study outline for relevance to patients therein at times redirecting or honing in on better data collection.  Checking language of questionnaires/surveys, researchers/academics are accustomed to writing for other academics, they often require patient assistance in communicating effectively in their research to patients in order to obtain the data they are seeking.  You are an expert of your body and of being an experienced patient.

 

My contributions have given my life a facet that it did not before, in the interest of helping others, now and in the future.  I have to say I have done many things now that have made me proud of myself.  The me from my first year of diagnosis could never had dreamed of contributing in the ways that I have.  Patient-centred Health Care is not a trending social media topic, it is happening, patients are demanding it and the only real way to get there is with you .... There are 2 kinds of research, quantitative (data) and qualitative (experiential), this is the one you are already an expert at.

 

Research that I am currently involved in are about power roles between patients and the health care providers and one to develop a measurement scale of patients effectively involved in research.  I am currently serving on a team that is involving patients in health care education at the local university, at hopefully every level of the curriculum. 

 

Find out what is out there in your area, at your local health education institution.  How can you get involved.  What research studies are looking for participants, locally, nationally?  Only you can answer a questionnaire about your situation.

 

Nothing About Us, Without Us!