In my last post I wrote a bit about my motivations to be involved in research studies as a participant, in this post I’d like to shine a little light on the researcher perspective. I’m going into my final year of a research and inquiry intensive undergraduate degree and have had the opportunity to both contribute to and carry out my own research projects.
Although I haven’t worked on MS research specifically, I’ve done most of my work on topics related to the social determinants of health and ableism. In a nutshell this means I like to examine how social and physical aspects of our society like education, income, water access, and technology, can impact the health and well being of people with different abilities. I say different abilities where others may use the term disabilities, to highlight how social constructs create and propagate categories such as able and disabled and the respective positive or negative connotations attached to these categories(I’m going to write a blog post later on ableism, stay tuned!).
As student researcher I’m also motivated by adding to that collective jigsaw puzzle I mentioned in my last post but in a slightly different way. Where as I participant I’m able to add much needed pieces to the puzzle, as a researcher I’m able to to help put the pieces together or look into a different way of fitting them together than someone else has tried. Researchers are often motivated by a set of questions they’re trying to figure out– why does this happen? what is the result of this? etc. These questions fill in the gaps and spaces not addressed by other research studies and make every study important in it’s own way. I know that as a student researcher myself, I’m passionate about the topic and questions I explore and every little thing I can discover has the potential to lay the ground for new and important questions to emerge. Again, I haven’t done any research on MS in specific but from a student researcher’s perspective these are the things I think are important for perspective participants to keep in mind:
-In my experience, it’s hard to recruit participants! So if you’re interested in getting involved, please do. Ask your parents, friends, doctors, etc. if they know of anything going on that would interest and benefit you.
-Although you may only be 1 person, the information you provide in a study is so, so important. As I mentioned before, each individual’s participation gives a researcher one more unique piece to help them figure out the overall puzzle.
-Participation is always voluntary!! You can opt-out at any time. Keeping this in mind, from a researcher’s perspective it’s just as important to me that you are interested in and committed to the study. Depending on the type of study, how you feel about your involvement can even impact the responses you give. Make sure that at the very least you think about some of the points I brought up in my last post– the participant perspective– before becoming involved.
– If there’s any part of the process that confuses you or you are concerned about, don’t be afraid to ask questions. There are ethical guidelines in place in different institutions in Canada to protect you as a participant and to safeguard your information. If you’re curious about things like what will be done with your information, anonymity, publication of results etc., make sure to talk with your doctor or study coordinator and find out the specifics of their project.
-Lastly, remember that a small amount of time on your end can potentially make a huge difference for yourself and others! Your small piece of the puzzle might be all that’s left to figuring out the particular puzzle a researcher is trying to put together.
That’s all for now on the topic of research… but if any particular question came up for you feel free to post them and I’ll try to answer them as best I can. À bientôt