Network Association: OneFlorida Clinical Research Consortium
As a heart patient for the past 20 years, I have been taking one 81 mg aspirin per day for as long as I can remember, without ever considering whether or not that is the appropriate dose for me. As I search my memory, I am not sure whether I began taking that dose based on a doctor’s recommendation or if I simply picked it up from general media reporting on medical research that daily aspirin use would be of benefit. Until Adaptable, I had no idea that the question of dose (81 vs. 325 mg) had never been settled. I would like to know the answer, both for myself and for anyone else with a heart condition similar to mine.
How did you get involved in ADAPTABLE? I became a patient partner for the Adaptable study through my participation in a broader patient-centered medical research program called Citizen Scientist at the University of Florida. Our Citizen Scientist group is a diverse assortment of about 8 to 10 patient representatives who are actively involved in medical research that “translates” the findings of basic science into practice at the clinical and patient level. We serve as a sounding board for proposed research, work side-by-side with researchers and administrators on committee assignments, and participate in specific projects on obesity, diabetes, smoking cessation, and hypertension, among others.
What do you enjoy most from your involvement in the ADAPTABLE study? I enjoy most having the opportunity to "weigh in" with my patient perspective on such an important national study and to exchange thoughts with fellow Adaptors.
The more I get involved in my role as citizen scientist and as an Adaptor, the more convinced I become that direct patient involvement is a growing opportunity to change the pace and direction of medical research. Actually, I will go one step further─ it is critically important for all of us patients, caregivers, and even those of us who are in good health at the moment─ to become more actively involved in the research process. None of the basic findings of science will find the way into our daily lives without first being tested in real-world settings. So we must seize the moment. If we do, we will greatly accelerate the real progress of medicine to provide solutions to our medical challenges, both for ourselves and the generations to follow.
Why do you think the ADAPTABLE study is important? The Adaptable study is important for two reasons: 1) the answers it seeks have the potential to save lives and prevent adverse events; 2) the large scale (nationwide) and methodology (greater use of electronic records) shows great promise for making research more efficient and effective.
What would be the three words your friends use to describe you? Friendly, passionate, creative.
What is the best piece of advice you have ever received, and who gave it to you? I like the quote from philosopher, Ludwig Wittgenstein: "Don't just react; look and think."