Being Involved in Research

Some people we interviewed partnered with research teams to design and implement clinical trials and other research studies. Others participated in observational or genetic studies that were not clinical trials but which helps scientists discover unknown effects of diseases or new approaches of diagnosing or treating disease. People in these studies might answer questionnaires about their symptoms and abilities, have physical examinations, have blood tests, genetic testing, advanced imaging to find disease in early stages, or other investigations.

Partnering in Research

Some people have been partners in driving the research agenda by serving on advisory panels or working as patient representatives on research studies.

 

Linda talks about being a patient representative on a research study that will lead to a clinical trial later.

Linda talks about being a patient representative on a research study that will lead to a clinical trial later.

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There has been, OK, this is something I have chosen to do. We have a research institute here that gets a lot of the NIH grants, and they are working on targeted breast cancer drugs and immunotherapy. And they were looking for someone to be on, a patient representative, a breast cancer patient representative to be on their board and to be part of their study. They were looking for five patients to be, and this is an NIH grant. I had to submit my data and I was accepted. And we meet quarterly and I can do it via Skype. And they ask for input and this eventually, one day, will be a clinical trial of drugs that will be very targeted hormone therapies. And so I was blessed to be, I think, part of that. And but I have not, at this point in time I have not needed a clinical trial. But I have, like I said, I wanted to participate because I felt this was important on down the road, if I were to ever have a recurrence. I felt that it would have been important for me to try to help in that development of a very targeted drug.

 

Jim describes his involvement in patient advocacy and research development.

Jim describes his involvement in patient advocacy and research development.

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So, I just really do a lot of advocating. I do like—right now, I'm in the midst of—I mean last night at 11:00 PM central because midnight Eastern was a deadline for revised grants. I do grant reviews for the MS Society nationally through the Department of Defense. And so, I did that. I do that on a regular basis.

Reasons People Participate in Research

People participate in non-trial research because they want to expand knowledge about a specific health condition or treatment, for potential personal health benefit, or because they want to learn more about their own health. Dulce said that participating in these studies gave her purpose, and she hoped what she had been through could help others. Li is dedicated to participating in research to help people with multiple sclerosis (MS) as a way to give back but does not focus on the scientific details of looking for an MS cure. For many, the decision to participate in research studies was not difficult. Chris saw few medical risks associated with his son taking part.

 

Alejandro learns from research participation while also helping scientists learn.

Alejandro learns from research participation while also helping scientists learn.

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Now, I know I started—part of what I've done in terms of research is I do work with [ORGANIZATION]. And 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. So, the fact that they—I think they asked me if I was interested in donating my body to science once I'm dead. I find that very, very cool. I mean, hopefully they don't help me die in the first place, which I don't want to do. I don't want to die. But what I mean is more about the idea that, more than ashes, your body can be used for something. I find that to be really, really neat. If they come and pick up the body, even better. It resolves a lot of logistical things.

 

Grace enjoys participating in research studies.

Grace enjoys participating in research studies.

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So that was interesting from like a genetic standpoint, but the studies, to me, are interesting because I like working with the students, I always want to know what they're doing, what they're studying, where they are in their studies and try to encourage them. I like to do the studies because I think they're interesting. I want to see how it relates to me, and then I see through the years the changes, how things have progressed. And so, I feel that it's important to do those. And I like connecting with people all over the United States. That's been interesting for me.

 

Dina wants to help researchers get good data.

Dina wants to help researchers get good data.

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So that was a huge one, and I was not compensated for that, but it was a lot of time. But I felt really strongly because 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.

 

Karen talks about individual and scientific benefits of participating in studies.

Karen talks about individual and scientific benefits of participating in studies.

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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.

 

People who participated in genetic research studies were motivated to contribute to a broader understanding of their condition’s origins. Dina said that she hoped her data and DNA would be useful to other people. For Tess, the decision to donate samples of her child’s tumor for a genetic study was “pretty much automatic.” Grace was excited she and her family members could all contribute to a study exploring the genetic roots of multiple sclerosis (MS).

 

Nora’s concern for her daughter drove her interest in a genetic research study.

Nora’s concern for her daughter drove her interest in a genetic research study.

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And then there is another one with the [INSTITUTON], and it has to do with genetics and the chemicals in the medicine that we're taking. And so that one is kind of interesting because he says that there are certain markers in us with MS, that we should refrain from certain anti-inflammatory medicines. So, , I'm really interested about that. So, when I get back home, because he sent me a kit to—I think it's based on saliva. So, once I get home, I will do that saliva, send it to him, and then he's going to do a test on that. Because my other concern is genetics. I want to know what's—my daughter. I want to know—I have MS, and I want to know, what's the propensity of her getting it? Is there certain genetics? Are there certain markers? So that, hopefully, that we can identify, so that she won’t be getting it.

Experiences in Research Studies

Many people talked about observational and genetic studies being low risk, relatively easy, and enjoyable to participate in. Others, however, had concerns about data confidentiality, the right of participants to control their data, and how people’s willingness to participate in such studies may change over time. These concerns are similar to concerns people had about participating in clinical trials.

 

Julia describes an observational study she participated in.

Julia describes an observational study she participated in.

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And I don't even know if I could call it the trial or it's a long-term study where I have to take MRI and I have to submit blood. So, they take blood from me every time I go there. And then my eyes, the OCT scans. And there was—and again, I don't know what it is called, the study, something very complicated. But I remembered was that I had—and then some movement studies, so I have to come and see this physician. And it was very—she ended this study, but it was very obvious how I was getting worse with that. I had to walk a certain stretch of the floor in that case. First, I could walk without the cane. Then that was not even an option even if I had tried. So, I had the walk with the cane. But basically, then she would time me, and I would walk slow and slow. But that's one—I don't know if it's trial, but yeah, it was just for the purpose of studying. And yeah, but nothing that would really endanger me. And I forgot what else. Nothing major, I guess.

 

Danielle and Jeanne will let the child decide whether she wants to continue participating once she turns 16.

Danielle and Jeanne will let the child decide whether she wants to continue participating once she turns 16.

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And will they keep following her throughout her life, do you know? Like how long they’re planning to—

Danielle: I believe so.

Jeanne: Well, they said until 16, and then it’s up to her. She gets to decide whether she wants to continue. But for now while she’s still the guardian we get to choose that she can participate. But they talked about age 16, so I imagine that it is that at least long-term to there.

Danielle: Yeah, like if she wants to after that, it’s her choice. Like I’m not going to say, “No. You have to do this,” when she gets older.

Jeanne: Right, but they’re going to call her, because they’re going to wait for when she’s supposed to go through puberty, we have to see if puberty happens for her or if she has a growth hormone problem.

 

Lori says she is happy for her child’s data to be used for research.

Lori says she is happy for her child’s data to be used for research.

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So, if we had to be at [HOSPITAL] and I had to deal with stupid conversations and all that stuff, I was in the right place, because he had done the preliminary research years and years ago, to determine what was working for the kids with Down’s syndrome. So, again, just like I'm doing the study with you guys, I could have said no, and she probably would have had a very similar treatment plan because it was what he had figured out was what they were using. But to sign up to give my information to him to continue to work and confirm that, by all means I'm going to help him do that. Because he found the protocol that's probably saved my daughter. So, he can certainly take all the data he wants from me. So, again, the study wasn't so much a trial, I think, as it was more a follow-up kind of thing—I'm probably using the wrong word.