Overview
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In this section, you can learn about peoples’ experiences with clinical trials for a range of medical conditions. Members of our research team talked, on Zoom, with 39 people who have multiple sclerosis. In this section, you will also find clinical trial stories from people who participated in interviews on other topics. This includes people with experience of breast cancer, people who are part of families with high cancer risk, and people who have children with experience of pediatric cancer. In the profile section, you will find profiles for people whose video, audio, or text interview clips are included on this site. For other profiles, please see Breast Cancer, Cancer Risk that Runs in Families, and Pediatric Cancer (coming soon).
People talked about their diverse experiences learning about trials, deciding whether to participate in a trial, being in a trial or trials, and ending participation in a trial. Some people also spoke about participating in research generally.
People had a variety of reasons for sharing their stories. Their voices and experiences are diverse, but all want to make their experiences publicly available on this site with the hope that they are useful to you.
Participants talk about why they shared their clinical trial stories.
Participants talk about why they shared their clinical trial stories.
Alejandro: Research and clinical trials. I'm all for it. I think that you got to start somewhere. … I appreciate everything I learn in that experience. Because they learn, and I like that. I learn, and I like it. And it gives me the sense of somehow, in some weird way, me being sick may help somebody get better.
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Dina: I think one of the challenges a lot of researchers experience is not having access to good data. And the more people that are providing samples, whether it's physical samples or information like this interview, and so forth, that gives other researchers the tools that they may need to decide on what kind of research, or to expand on research, and I feel very strongly about that.
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Jennifer: There's so much great things happening in research. You just have to be optimistic that those answers are coming. It's not on my timeline. I'm very impatient, but they're coming.
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Jason: And I know any time I participate in a study or a trial or something, the only benefit that I would like to get out of it is, when you publish, please send me a copy, because I want to know what the findings are. I want to know, what did you learn? You spent all this time and you've paid your team of researchers and you put all this work into it. What did you learn? And I'm hoping one day someone says, “Well, we learned that this cures MS. We learned that this re-myelinates the spinal cord.” That's what I'm hoping for one day, hopefully.
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Lisa J.: I think, I mean, research is always good. You know, that’s- that's a goal in advocacy. … I mean, more patient advocacy and researchers working together for something that is viable and sustainable, of course, right.
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Rhonda: I wish there would have been something like this in my early years, or even 10 years ago. There's always somebody who has an answer if you have a question. It may not be the answer you want. But I think there's power in community.
Dr. Ellen Mowry describes the importance of patients sharing their stories about clinical trials.
Dr. Ellen Mowry describes the importance of patients sharing their stories about clinical trials.
I think getting more direct qualitative feedback from participants has been really helpful, to be honest. To think about well what things are modifiable and to shape like how we can think about opportunities to engage people using that feedback.
I also think it’s a great opportunity for people living with the conditions to like if they can hit this website, and say, well what’s it-, like what is it? What are the things-, what are the benefits of being in a trial? Like, what should I know about this? Might be a little less comfortable or that sort of thing.
I really see work in clinical research in general, and especially in trials, as a huge partnership between the clinicians and researchers who are doing the work and the people living with the conditions, who are so dedicated to participating in these studies and to going that extra mile to help us move the field forward. And so, it’s like a real honor to be involved in this kind of work, and I deeply respect the participants who put their faith in us to like, you know, move the field forward and make the world better for like the next people coming through with that condition.
We hope you find the information here helpful, inspiring, and reassuring.
Funders
This project was made possible by the University of Wisconsin-Madison Institute for Clinical & Translational Research (ICTR) with support from NIH-NCATS Clinical and Translational Science Award (CTSA) 1UL1TR002373 and a strategic grant from the UW SMPH Wisconsin Partnership Program (WPP 4358). The Johns Hopkins Center for Qualitative Studies in Health and Medicine also provided resources to support this initiative.
Some of the experiences with clinical trials included here were drawn from other Health Experiences Research Network studies.
The childhood cancer study, coming to the site soon, was supported by Oregon Health and Science University through the NIH National Center for Advancing Translational Sciences (UL1TR002369).
The cancer risk that runs in families study was supported by the University of Wisconsin-Madison Institute for Clinical and Translational Research funded by a Clinical and Translational Science Award program, through the NIH National Center for Advancing Translational Sciences (ULITR002372), and the School of Medicine and Public Health Wisconsin Partnership Program (WPP 3086).
The breast cancer study was supported by the University of Wisconsin-Madison Institute for Clinical and Translational Research funded by a Clinical and Translational Science Award program, through the NIH National Center for Advancing Translational Sciences (1UL1TR002373), and the School of Medicine and Public Health Wisconsin Partnership Program (WPP 4358).
Limitations
If you are considering being in a clinical trial, the experiences of the people we interviewed might help you learn what to expect. But keep in mind that the experience you might have in a clinical trial depends on what condition you have and what a particular trial is trying to find out. We hope you consider this as you listen to the stories presented here.
For example, many of the people we interviewed had a chronic disease (multiple sclerosis) or cancer and enrolled in trials of medications that were meant to be used for many years. None of them enrolled in trials for conditions that are not chronic, such as injuries or pneumonia. Trials for these “acute” or short-term conditions might last a shorter time and might focus on getting back to normal health rather than on living better or longer with a chronic disease.
A related limitation concerns the types of clinical trials people participated in. Nearly all the people we talked with enrolled in clinical trials that were done to see whether a treatment could have an important benefit to people with their chronic conditions like multiple sclerosis or cancer. But other types of trials, called Phase 1 and some Phase 2 trials, don’t aim to learn about the benefits of a drug or other treatment. They are usually about the chemistry and safety of a new drug in humans. The experiences that are shared here won’t help you to understand much about the experiences of people who participate in trials like these.
Another limitation is that we focused primarily on clinical trials conducted at academic medical centers. Other trials are conducted in private practices that work with an outside company that specializes in conducting clinical trials. The experiences of people who participate in clinical trials in these settings might be different from those of most of the people we talked with. People might also have different experiences depending on whether the trial they participated in was sponsored by a pharmaceutical company, a government agency, or a private nonprofit foundation.
Finally, we had more access to people who enrolled in clinical trials than to people who decided not to. We talked with a few people who declined to enroll in a particular study, but not enough people to describe the full range of experiences of people who choose not to enroll in studies or who never had the opportunity to do so. Non-participation is important for several reasons. For example, talking with more people who have not participated might help us understand negative personal experiences with health care providers or researchers, a topic raised by a few people we talked with. We might also learn more about mistrust of medical research and about experiences with recent initiatives by the National Institutes of Health and others to broaden participation in clinical trials (For more information about these initiatives, see the Resources Page).
As is true for all Health Experiences Research Network studies, we were not able to recruit as heterogenous a group of interviewees as we would have wished.