Why I’m Involved: Stories from Patients Shaping Asthma Research

By Adem Lewis / in , , , , , /

I was a little intimidated, because at first it took a minute to really figure out
what my role was going to be. You know, okay so what am I going to do? The other studies that I was
involved in, I was more the person being helped, whereas, in this study I feel like I was on the other side, along with the researchers, of helping find out what we should do to
get the information from the patients. I’ll tell you, I know one of the major things
that we helped with was helping them understand more about the apprehension that
the patients will feel. My mom is one of those kinds of people. If you come in her house with an iPad, she’s gonna send you back outside. My mom by the way is an asthma patient and she totally mismanages her asthma. She doesn’t listen to anybody. If you’re supposed to be helping her, a medical person, she doesn’t want you with anything that looks remotely like a computer. It is the funniest thing to me and it’s like, “Mom, you know I work with computers.” “I don’t want them studying me and sending it…” You know, anyways long story short, I brought up that kind of stuff and they were like, “oh okay, we didn’t think about that.” So it turned out I had a lot to offer. So I was really grateful for that. Anything you bring, no matter how small it
may seem, anything that you say, any ideas that you have will be valued. And, you know, a lot of
things that I didn’t see that would be that important turned out it was, you know, something that was really good. I think I play a valuable role. And I don’t think I really realized how much until we went to a conference and I participated in one of our presentations about the patient, the provider, and the researcher and it seemed to be a hit with everybody that was there. It was shared decision-making and we tried to get the patients to participate more within their treatment. A lot of times, the patient goes in, and they tell the doctor what’s been going
on with them, the doctor tells them, “Okay this is what you need to do.” That then
the patient never told the doctor how the last time they took the medicine, they
had some adverse reactions or maybe the medicine costs too much so they had to
decide between buying the medicine and buying something else. So their doctors are making decisions based on an incomplete about of knowledge. And it’s not always the best
decision for the patient. So we want the patients and the doctors to work together. I feel like when I’m a part of the research team, I represent other patients or other families who are dealing with asthma.
And in many cases, patient voices aren’t really heard or they may not be acknowledged. So I feel like I represent them and I advocate for them. That made me feel proud to be part of that research team. And they were happy to have me. I really saw this as an opportunity to really learn about asthma in a way that I really wanted to learn about it. That’s what made me want to do the study. Every time we do something I’m learning more and more about asthma than studying what we’re trying to do. We are bringing experience from our place as a mother, and also has the breadwinner and the main one to want preventive measures for our children. You know, if it’s just asking our group, people will hear us but would something be done about it? But the doctors, the coaches, everybody can pull
it together to take our concerns as parents and bring us some actual actions that can help a little bit. We kind of became kind of like a family. A family of people with the same common interests. And our people are so diverse, they’re real and that’s very rare. If there’s something bothering me, I can talk to them, they’re not too big or too above to talk to little old me. Then there are the professionals who say we inspired them. That kind of makes you feel good inside. It makes you feel like, you know, we’re all in this together. Be open. Be honest. You don’t have to water it down, whatever it is you have to tell in your story, don’t be afraid to tell it. Know that what you have is valuable and what you have and what your experiences are valuable. You will come out more informed and with more hope than before you went in.

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