Los Angeles, California
Network Association: Patient-Centered Scalable National Network for Effectiveness Research (pSCANNER)
Heart Disease is the number one killer worldwide. So this is an important issue that we need to move the needle on! As a patient and survivor of a rare congenital heart disease defect that occurs in less than 1% of the population and usually found during an autopsy, I know first-hand what it is like to live with a chronic, disabling and life-threatening condition. Since doctors have said I am lucky to be alive, I decided to use my second chance in life to help make a positive difference. This led me to using my personal health experiences to serve as an architect of change in advancing patient-centered health outcomes research. This video produced by my son highlights my volunteer activities.
How did you get involved in ADAPTABLE?
I was invited to participate in ADAPTABLE by my cardiologist and the PCORI Ambassador Engagement team. I have experience with research through my role as a volunteer patient reviewer of research at the University of California Los Angeles, as a PCORI Ambassador, and with the Department of Defense Congressionally Directed Medical Research Program where I represent the patient voice in research projects. In addition, I volunteer as a Heart Survivor Patient Advocate and Citizen Scientist with the American Heart Association/American Stroke Association and other community healthcare organizations.
Why is providing the patient perspective important in clinical research?
In ADAPTABLE, we are really bringing the patient needs out of the shadows in bold and innovative ways! For the first time ever we are looking to improve patient-centered care with patients at the table, not just on the table. Research is necessary to determine if and how changes can best be made. As noted in the Building Trustworthiness in PCORnet meeting, we cannot improve patient care without involving patients in the process. However, patients can be leery about participating in research. Participation takes a lot of buy-in from patients and trust from both patients and researchers. Adaptors can help raise awareness of the important and valued role of patients on the research team and remind others that this patient-centric idea is for everybody and it is about community. The goal is to have a community come together to help improve the quality of life for its members. In order for us to do this, we need to embrace the strengths and weaknesses head on, and be honest about the current shortcomings in health care so that we can move forward.
Why do you think the ADAPTABLE study is important?
ADAPTABLE is providing critical knowledge to help doctors care for their patients and for patients to make informed healthcare decisions. We are building a model for patient-centered research. I believe our work is about the community coming together and patients taking an interest in their own health in order to live the most fulfilled, productive, and longest lives possible.
What is especially great about ADAPTABLE is our approach. We are taking what we have learned from existing models of research, adding the power of technology and harnessing data from PCORnet to enable faster, more trustworthy clinical research.