Location: Gainesville, Florida
Network Association: OneFlorida Clinical Research Consortium
I am a Citizen Scientist at the University of Florida Clinical Translational Science Institute, a member of the OneFlorida Clinical Research Consortium. As Citizen Scientist my role is to help share patient perspectives in the implementation of learning health system projects. I am a member of the ADAPTABLE aspirin study team assisting with recruitment efforts.
Cardiac issues have impacted my life for a long time. When I was a teenager, (back in the day when the belief was that the world was flat) my mother died after suffering through the tragic effects of rheumatic heart disease. I recall vividly how she suffered and died, because at the time nothing could be done to help her.
I often think of how far cardiac care has evolved over the past 50 years and what a difference it would have made to her quality of life if we knew then what we know now. With that in mind I truly appreciate the importance of research & the development of cardiac care. I'm grateful that my University of Florida training and exposure as a Citizen Scientist has given me a better understanding of the language & practice of patient-centered research and furthermore, has allowed me the unique opportunity to be effectively engaged in the process.
On occasion, I spend time in cardiology clinics and labs with my husband whose pacemaker is keeping him alive & well after exceeding his “best use by date!” I’m extremely grateful for that wonderful device and know that many more similar lifesaving treatments and devices are being researched & developed every day.
My general interests include travel, entertaining, digital art & graphic design, integrative medicine & psychosynthesis, and Texas Hold'em with my gal pals.
How did you get involved in patient-centered research?
I heard about patient-centered research from a friend who was one of the first Citizen Scientists at University of Florida. I learned the program was recruiting patients to be involved with the Translational Science program. I loved concept and signed up immediately!
Why do you think the ADAPTABLE Study is important?
The ADAPTABLE Study is important because aspirin is such a widely used medication and the best dosage has yet to be determined. This study is a good fit for mining electronic health record data to find and approach large groups of patients.
What do you enjoy most from your involvement in the ADAPTABLE Study?
I enjoy being part of a team considering all aspects of the study from start to finish. I'm glad the researchers have let me into their playground!
Why is patient-centered research important?
Patients need to understand that we are responsible for our own health. We need to work with researchers to let them know the questions that are important to us and to assist with finding answers.
Please provide any examples of how patients help researchers in clinical research.
Patients can help researchers by informing them of issues that are important to us. When studies are being designed we might shed light on real world aspects they may not have considered (e.g. travel & time considerations, language barriers etc.) Patient involvement may also help with researcher and participant morale, taking the edge off the clinical feel, adding the human touch, and letting them know they are appreciated.
What would be the three words your friends use to describe you?
Reliable, creative, a good friend
What is the best piece of advice you have ever received?
Still waiting to find out!