Updated: Nov 8
By Dr. Pamela Bosch
Researchers who study people who have had a stroke try to understand many concepts, from ideal drugs or surgical interventions to manage early effects of the stroke to how soon to begin therapy after a stroke. While these are all very important questions to answer and we need good science to answer them, you may still hesitate about being a research participant yourself.
It’s natural for you to consider: “What’s in it for me?”
Honestly, that depends on the study. But here are a few things I can tell you for sure. You will certainly learn some interesting information when you participate in a study. Researchers are passionate about what they are studying and will enjoy telling you about it! Many researchers pursue a type of research because of personal experiences they have had – someone close to them has experienced a stroke or they have observed a need for better care. For me personally, I had worked as a physical therapist in neurorehabilitation for many years and I wanted to be sure I was providing the best care for my patients. Many of my patients would express concern about physical limitations after the stroke. I was interested in helping them to maximize their ability to be physically active and reduce the risk of having another stroke.
Participating in research can also help you gain a better understanding of your own strengths and weaknesses after your stroke. As a part of a study, a researcher may assess your speech, your balance, your ability to use your arm or walking. This will provide you more information about specific problems or strengths you have and might give you ideas about new activities you can do.
Equally important though, is that as a research participant, you help to educate the researchers. That is, as you share your experiences with the researchers, you help them to understand better what it’s like to have a stroke, to live with the effects of a stroke, and what is important to people who have had a stroke. Through your insights, YOU may lead researchers to their next research question, which can help to improve the quality of medical care and rehabilitation provided to people who have a stroke.
Finally, you might be compensated with a gift card, some gas money, or a small payment for participating in a research study. This is not a given because researchers do not always have the money to compensate their participants. Also, some researchers worry that payment entices people to participate in research for the wrong reasons. Given the points discussed above, hopefully you now have many reasons to consider being a research participant!
If you do decide to participate in a research study, here are some important points to know:
1. Researchers must get every study that involves humans approved by an “institutional review board” that insures the ethical and safe treatment of people who participate in research studies.
2. The risks of the study must not outweigh its benefits, which helps to protect your safety.
3. No research participant EVER has to do something he or she does not want to do. If you decide to participate in research and you are being asked to do something you do not want to do, you have the right to say no and the researchers will not be angry or treat you differently. You are in control if you decide to be a research participant!
Check out a past study offered to stroke survivors here.