Ann Arbor, Michigan
CDRN Association: LHSNet, Patient-Centered Network of Learning Health Systems
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.
I grew up in a very small town and with a supportive family, I was able to overcome poverty and became the first in my extended family to graduate from college and obtain a Ph.D. in higher education from Michigan State University. I spent nearly 30 years in higher education administration, mostly in university housing, while focusing on teaching and learning. I have been involved in student mentorship for most of my professional life and remain one of the founding advisors to a group called FirstGen Students at the University of Michigan, Ann Arbor.
I'm grateful to have a wonderful family, a great group of friends, a loving (and life-saving bride and partner) and the unconditional love of my three dogs who make sure I get my daily exercise by taking me for walks!
Why do I think patient voice is important in research? I think patients themselves may be the most important and yet underutilized voice in research. The ADAPTABLE Study is a wonderful example of how patients can assist researchers in prioritizing and studying what matters most to a patient who lives with an illness or disease every day. Their insight and perspective can help to uncover new ways to look at old problems.
I particularly think patients who come from very different backgrounds can be instrumental in finding new breakthroughs in research. In addition, patient involvement in research can extend the research into the mainstream population and not siloed in research circles where it is too often not disseminated to the public at large who would benefit the most. I look forward to bringing my naive but very motivated mind to this study as a patient whose childhood background was in poverty and whose educational and career choices were not in healthcare.
Favorite book (at the moment): When, Daniel Pink
Favorite movie: Caddy Shack