Meet The Adaptors
In ADAPTABLE, the role of the patient has shifted from participant to partner. Adaptors are patient representatives who have been involved in ADAPTABLE from the beginning. Working with the study team, Adaptors helped design the protocol, consent form, study portal, and study materials. Adaptors will be integral in disseminating study updates and results to other patients and in the community. Adaptors participate in investigator meetings, on the Steering Committee, and two Adaptors serve as patient representatives on the Executive Committee. In this video, Dr. Matthew Roe talks about collaborating with Adaptors at the ADAPTABLE Kick-off Meeting.
Health eHeart Alliance, a PCORnet Patient-Powered Research Network, leverages unique patient-centered processes to support the Adaptors Team. Mark Pletcher is the Principal Investigator and Madelaine Faulkner is the Project Director and facilitates the Adapter team. Health eHeart supports the role of the patient leaders by helping to ensure patient-friendly processes, creating space for the patient voice via Adapter-centered meetings, and supporting shared understanding among the researchers and patients in the study.
Los Angeles, California
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 research.
Fortunately for me, my heart disease has been relatively minor. A single event and new medication has made my life relatively unchanged. However, my family history has a different story. All male members on the paternal side of my family have had early cardiac problems with many early deaths. My father had his first heart attack at age 39 and passed away at age 65 after bypass surgery, several more heart attacks, and two major strokes. For as long as I can remember, watching my father take a deep breath or lay his hand on his chest would stop me in my tracks. I was always worried it could be his last day. And, soon my worry was about my brothers, uncles, and cousins who, one- by- one became victims of heart disease.
New York, New York
I am the youngest of 12 children. We all have diabetes. Today, there are only three of us alive. Diabetes has ravaged my family, but not defeated us. This hard wake-up call lead me toward advocacy in chronic diseases and clinical research, and is the reason why I fight today for patient education and participation in clinical trials. I worked closely with physicians at Montefiore Medical Center to manage my diabetes and with innovative researchers who restored sight in my left eye. It was this exposure to researchers where I developed respect for the value and impact of clinical research and those who work in this field.
I am from a small family. My life drastically changed when the principal people in my life died. First my mother passed away, then not too long after, my husband passed. There was no preparation for that. We prepare for everything but not this kind of life adjustment. I floundered for a while and then started having high blood pressure and anxiety. Despite a lot of medication changes, I had trouble controlling my blood pressure. My personal health experiences have put me in a place of better relaying and helping physicians understand the patient perspective in health care.
New Orleans, Louisiana
It seems that we have heard for years that people should take aspirin to prevent having a heart attack or stroke, but it is surprising that we don’t know what the best dose is. I have lost three friends to heart disease; I don’t want to lose more. I think it is important that we get the word out about ADAPTABLE and encourage patients to ask their physicians if they are eligible to participate in this study.
I got involved in ADAPTABLE when my primary care doctor called me early one morning and convinced me that I could make a useful contribution to the program. I think it is important that patients be involved in medical research because many times, what is important to the doctor is not the same as what is important to the patient.
I think that ADAPTABLE is an important study largely because it is the first big medical research project to attempt to use electronic medical records. There is a wealth of information recorded in electronic medical records. These records make it possible to do research with thousands of patients and produce results that will help physicians and patients find answers to their health questions. I enjoy the feeling of involvement in a worthwhile endeavor.
Ann Arbor, Michigan
After suffering a heart attack that left me without a heartbeat for over 30 minutes, I set a goal to promote, change and reinvent cardiac rehab everywhere. I also became a patient and family advocate and through this work, founded PatientisPartner, an educational website dedicated to creating authentic patient partnerships with healthcare teams.
I have been a patient advisor at Michigan Medicine for over five years and helped redesign their Cardiovascular Rehab program and patient education materials. My relationship with the Patient and Family Centered Care Program at Michigan Medicine connected me to other resources, including other patients that I have recruited as advisors, sharing their voice in committee and board meetings and in patient-centered research.
San Francisco, California
Partnering with patients in research is such a rewarding experience. As the Health eHeart Alliance Project Director and facilitator for the Adaptors Team, I have had the opportunity to learn about the personal stories of Adaptors and feel inspired by the life experiences that motivate them to become involved in research. There is altruism, family history, loss of loved ones, curiosity and a desire to impact health outcomes for the better. The motivating factors for researchers and patients are remarkably similar, we just need to create opportunities to leverage the different voices. I am honored to work with such a diverse set of patient partners in ADAPTABLE and I, regularly, find myself learning alongside them as we build this new paradigm for patient-centered research.
Bill Larsen, a beloved Adaptor Team member, passed away on June 30, 2018. If you had the opportunity to work with Bill, you know he was a caring, articulate, and passionate person.
In his work as a citizen scientist and an ADAPTABLE patient partner, Bill worked through the lens of the potential patient who may be contacted to participate in clinical research. He thought beyond himself and always asked “what would the average citizen want to know about research?” At a recent meeting, Bill said, “I try to beat the drum of educating the general population about the importance of participating in clinical research.”
And beat the drum Bill did. Bill came to work on ADAPTABLE from his experience with the OneFlorida Citizen Scientist Program. In this program, Bill brought his own life experiences to the research process, engaging with researchers to improve the quality of health care. On ADAPTABLE, Bill was an active team member who provided the patient voice in national and local meetings. Bill would respectfully voice his concerns, ask thoughtful questions, and provide creative ideas to any challenges. In addition to speaking engagements, Bill was a gifted writer and enjoyed sharing his thoughts on the patient-researcher relationship and the value patients bring to clinical research. You can learn more about Bill and his perspectives by reading his profile, watching this video, and reading this article he authored.