What are you savvy about?
I am savvy about cardiac disease and, in particular, cardiac rehabilitation, and the fact that it has such a high success rate, yet is woefully underutilized by the those who would benefit from it. As a survivor of an Sudden Cardiac Arrest that left me without a heartbeat for more than 30 minutes, I have now following a passion to create a second life with new meaning and purpose for a second career finding ways to leverage the power of patients to change the way our healthcare system operates.
What is one of your most memorable advocacy experiences?
Having joined the University of Michigan Cardiac Rehab patient advisory board, I have worked with many of the staff to fundamentally change the way they do the orientation to cardiac rehab. Rather than be drowned with the typical system of compliance paperwork, we have changed to assure that orientation provides a way for new patients to share their cardiac event story with one another and build a community of patients who have all gone through something frightening and often life-changing and that they all will be embarking on a way to change/extend and thrive in their new lives post-cardiac event. It's been a joy to work with staff in a healthcare who truly hear the patient voice and allow for experimentation to change.
What's an example from your own life of how healthcare is not user-friendly?
During recent "moh's surgery" to remove basal cell carcinoma I was given a "choice" of 3 options to close the wound. Knowing nothing about the costs, I was not given an "estimate" for each of the options and presumed that it would all be "similar"-- well, the one I chose turned out to cost about $4500 and if I'd have chosen the first- it was no further cost than I'd already paid. :( It's just an example of the only industry in the U.S. (that I'm aware of) that wouldn't have raised cost BEFORE doing something to you and then when you raise afterward, you are sent to "billing" who simply continues to perpetuate the "factory-like" push for efficiency over transparency.
Why do you think patient insights matter?
I think patients (particularly those who are not in healthcare as a profession) can provide incredible insight and innovation to most every challenge that faces healthcare. The more folks from different academic disciplines, different SES strata, and other identities engage with all aspects of healthcare, the more opportunity there is to find innovations that can help to solve some of these incredibly thorny problems facing healthcare. The lens a patient has is simply one that can't be "duplicated" by those who work, live and breathe the culture they work in every day. The more authentic opportunities we give patients to provide insight, the more likely new questions will be raised and problems solved.
What excites you about being a Savvy Co-op Member?
I think the concept is incredibly innovative. I love the idea of being with a "community of patient experts" who can use a new lens to find ways to help our healthcare system to thrive and truly meet a system that is effective, personal, cost-conscious, transparent and authentically working with patients rather than doing things to them.
What hidden talent do you have that others don’t know about?
I'm a decent golfer, a great dog-walker and the first in my extended family to graduate college from a family on welfare-- so I'm pretty resilient. :)
If you could give one piece of advice to people just getting started sharing their healthcare journey, what would it be?
Be patient, yet persistent. Be hopeful. Be YOU!
Which term(s) do you prefer to describe someone who utilizes healthcare?