When Patients Partner with Researchers: Desiree’s Perspective

In ADAPTABLE, patients are more than study participants, they are partners with researchers and clinicians to improve cardiovascular health for all patients and those who care for them. Adaptors are patient representatives who have been involved in ADAPTABLE from the beginning. The Adaptors team works alongside the study team, participating in team meetings and providing review and input to the protocol, consent form, study portal, and study materials.

We talked with one of the Adaptors, Desiree Davidson, who provided her perspective on the value patients bring to clinical research, the importance of patient-centered research, and the ADAPTABLE experience.

How can patients inform researchers in clinical trials?

Goodness, how did we do research before? After participating as an Adaptor in Adaptable, I wonder how research could be done any other way.  There are plenty of patients that do not feel comfortable relaying their concerns to their physician.  When we have a doctor’s appointment we are going to see a physician or a nurse, not a guy in a lab coat! We do not see our care providers as researchers and it feels like there has been a barrier between patients and researchers, that is concerning to me.  This model of patient-centered research is an opportunity to advance medicine, in my opinion.

What activity do you appreciate most from your work on the ADAPTABLE Study?

If are worried about talking to your doctor, you might feel it is easier to talk to a researcher. There is some fear once you get to a certain age, especially if you have been healthy all your life. The fear is related to not wanting to face the challenges of aging and being open to accepting what the physician may have to say. This comes back to education, you need to educate yourself about what can happen—to be able accept that somewhere along the line, you are fallible. For example, high blood pressure doesn’t hurt, it causes no pain. When I went to the doctor, the nurse told me my BP was high. I thought OK—the severity of having high BP for years is my responsibility to know. If I knew this back when I was 40, it would have made a difference to me, knowing what I know now, it matters! This is the kind of information you can get from a researcher. So now I have begun to educate myself. This role of clinician/ researcher is so important. A doctor may see 25 people a day, let’s say 18 of them have high blood pressure, and this conversation will not happen with the doctor. For the patient they think it is someone else who will have high BP, someone else will get diabetes. You do not think it will be you, maybe the doctor thinks this conversation has happened already. Ultimately the patient needs to have this conversation with their doctor, but the other hand, the patient needs to be willing to hear what the doctor tells them and take it upon themselves to get educated.

We have to learn to be comfortable asking questions, because an uncomfortable conversation today about a life-threatening condition, down the road in a certain context, is not really that uncomfortable.

What activities or hobbies do you enjoy outside of your clinical research activities?

I have always fallen into the role of teaching people. My first job was in a manufacturing company, my job was to explain insurance benefits to a labor force. This was something I fell into, and it was easy for me. This role as a patient leader feels natural to me. I was in personnel management for 37 years, and it was the easiest thing in the world to talk to people and teach them something new. I guess I have never had to work hard, this role is the easiest thing for me to do!

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