Karen
See full story
When Karen was 26 years old, she started experiencing numbness in her arm. Despite testing and several follow-up appointments, Karen did not get diagnosed with multiple sclerosis until over a decade later when she was 37. After meeting someone who participated in the trial for the medication that she took for MS, Karen decided to start looking into clinical trials online. Though she was not interested in trying a different medication because she was doing well on the one she was on, she had “an innate desire to help people” and found many different kinds of research studies. Karen has participated in many studies and is currently in one at the NIH evaluating the effects of MS over the lifetime. She was also in a meditation trial testing if meditation would help with fatigue and stress related to MS and another for a medicinal wrap to improve pain. She has never received results back from a study and would love it if there was a database of results that participants could look at. Karen also works as a consultant for a company that tries to recruit people for clinical trials where she helps to “demystify, you know that whole fear” that people have about being part of trials. She shares her own experiences being in clinical trials and tells others, “you don’t have to think of a clinical trial as being a guinea pig.... a science experiment, that’s not what clinical trials are.”
Karen keeps hard copies to track what trials she has been in.
Karen keeps hard copies to track what trials she has been in.
I always got a written, I always got like a hard copy, even if I signed something online, for me to have. And I actually have a whole file. I keep a record of everything that I’ve been part of. I have a whole file on studies because, you know, I like to go back and see which ones I’ve done and then sometimes go back and look for the results of the study.
Karen trusts the clinical trial team to keep her data confidential.
Karen trusts the clinical trial team to keep her data confidential.
Any feelings you’ve had about sort of sharing your health data with clinical trials?
I know there are some people that probably are real funny about that, and I can understand and see both sides of that coin. And maybe it’s because I’m not in a job where my health issues are front and center or where an employer would need to know more details about my health. I’m not really, really concerned a whole lot with that whole issue. I’m really not. I guess I trust that when they say there’s going to be confidentiality, that there is. And I just trust the process. And nothing has happened yet to make me not trust that. So, I’m pretty okay with, you know, releasing my medical information within a clinical setting, and I’m just assuming that they’re following the rules of confidentiality.
Karen talks about individual and scientific benefits of participating in studies.
Karen talks about individual and scientific benefits of participating in studies.
And now I am directly involved in that money that I’ve advocated for. And I’m part of a clinical long-term study to watch and evaluate the effects of MS over my lifetime. So, I will be going every year until I die for them to do full evaluations, blood work, MRI, everything, to evaluate how I’m doing over the months of my life, from this point forward. And then when I die, my brain and my spinal cord are going to be donated to NIH for MS research. That makes me very, very happy. So, it’s about a six‑month interview and, you know, trying to work, but I just was passionate about this particular study, and for me it works out because it’s close. I love the topnotch care I’m going to receive.
Karen says there should be an easily accessible database of trial results.
Karen says there should be an easily accessible database of trial results.
I would love if there would be a database for those results that just don’t get mailed back to me. I mean, I personally would love to know the results of them, but I don’t always have the time, or I forget, you know, and I don’t always have the time to go back and research and find them. But I’m very curious to know, you know, what the results are of studies that I’ve been part of.
I wish there was some type of way that you could either be provided with information following the study. You know, or a way that you could easily find that information because I don’t, now that we were talking about that, I don’t know that there’s ever been, in any that I’ve done, any type of like way that you could easily get that information once the study or, you know, the trial is done. Whether it be you provide them the information for them to get back to you or like somewhere that you could even set a reminder for when it’s done in five years, so that you can go in and check, you know. Because, I mean, some of these are years long, and, you know, you kind of forget about it. But I’d love to know what my part in it was.