Choosing to be a part of someone’s research study is a big decision. When I was 15/16 and was first diagnosed with MS, I enthusiastically jumped on board for every study that I was asked to be a part of. I didn’t even really take a second to think about it at the time, I just signed up right away– usually in the same appointment. At the time I just wanted them to find out more about this strange disease; I knew that not as much was known about its manifestation in children and I hated that.
For me, signing up to give my health information away seemed only natural if it was going to help doctors and scientists learn more about MS, because then I would ultimately know more about it too. I’m still involved in a few of the studies I first signed up for 4 years ago and have had time to reflect on the whole thing. For me, being involved has had both ups and downs. A benefit I’ve found of being a part of research is that I’ve gotten to document and keep track of my health more frequently, I think, than if I had opted out. Another benefit is that I’ve been keen on following research progress and staying up to date with what’s going on in terms of advancements and progress. I’ve been able to develop a relationship with my specialists, and by that I mean I feel comfortable talking to them about any-and-all of my concerns. The strongest pull for me to stay involved though has been the fact that all my participation means for me is a few extra appointments and tests each year.
The research itself however, has the potential to impact and improve foundational knowledge of MS, treatments, and maybe even a cure one day for not only myself but for future generations of youth diagnosed with MS. It’s not always easy to participate though. When I’m feeling good and healthy or when I’m super busy just enjoying life, it can be kinda tough sometimes to have another reminder of this illness lingering in over my head. If I could give some advice or notes to any of you out there considering participation in a research study this is what I would say:
- Take a moment to consider what participation means to you both now and for the duration of the study. Think about the physical aspects, as well as emotional.
- Make a list of what you’ll be getting out of participating and what you’ll be giving. Consider this list and see if it changes how you feel.
- Don’t be afraid to ask question and make sure to read through any and all documentation!
- Remember to consider both the personal and general benefits your participation might result in. Consider potential negatives too!
- Don’t be afraid to be involved. Participation is always voluntary! Make sure you feel good about participating before you commit, but if you change your mind that’s okay too.
- Lastly, being a part of a study doesn’t make you a lab rat or a number attached to some data. It allows you to add your unique piece to a jigsaw puzzle that a group of your peers and top-notch researchers are working hard on together to figure out.
If I could go back I would have taken more time to consider these points before I made my decision. I know that I would still do it all over again and sign up to be involved, but I think that if I had taken more time to consider these points when I was younger– I would have had to evaluate less what participation means to me now, as an adult. I guess in that scenario I wouldn’t have all this material now to write for you guys about 😉 I’m a student researcher myself now– in my next post I’ll be talking to you guys a bit about all this from a different perspective. Until then, all the best!