Yesterday, I took part in a panel discussion at the Executive Master of Healthcare Leadership Class of 2017 Convocation at Brown University (say that three times fast … I sure as hell can’t) and part of our discussion was about leadership in the healthcare space.
My fellow panelists were folks who were employed in the healthcare arena (Michael Hudson, EVP of Blue Cross Blue Shield, Secretary of the Executive Office of Health and Human Services Elizabeth Roberts, President and CEO of Care New England Dennis Keefe, Director of Alnylam, Ironwood, Momenta Pharmaceuticals Marsha Fanucci … and me), and I thought about who I work with: medical device companies, diabetes advocacy organizations, magazines, publishers, etc. I like the work that I do and I like the organizations I work with.
But, but, but. Who do I work FOR?
The people I work for are people touched by diabetes, and to be honest, that starts with me and my family. (My oxygen mask on first, right?) One of the attendees yesterday asked me what kind of advocacy work I did as a kid with diabetes, and I admitted, “None. I decided to get involved when I was in my mid-20s. Before that, I didn’t do much at all in terms of diabetes advocacy.” It took time for me to grow into a desire to connect, and that desire was driven by isolation.
I joined this community because I didn’t know anyone in my day-to-day who was dealing with diabetes. That absence of community drove me to seek out my peers and find people with whom I could be weird together. And now this community of like-pancreased people can lean on one another and learn from one another in ways and about things that healthcare professionals aren’t able to provide.
I spoke about the positive influence of patient communities a lot yesterday. When discussions turned to the silos of healthcare and the dissemination of information, I advised people to take cues from patients who are sharing their stories online for a how-to. “If you want to see information that’s crowd-sourced and self-policed, hopefully without a whole bunch of egos and competing interests, the online patient communities can give you some tips on how it’s done. It’s not medical advice but it is honest and shows what illness looks like in the wild. Patient communities take information from medical teams and integrate it into real life, with better health outcomes as the goal. And that’s what we all want, right?”
Discussions about “what makes a good leader” took up the better part of the afternoon discussion, and I leaned heavily on bursting the bubble of privilege. “My job as a voice in this community is to recognize what I have access to and what others are striving to gain access to. My refrigerator is stashed with bottles of insulin, while some of my fellow people with diabetes are panicked about where their next injection will come from. I need to remember that and raise their voices, whenever I can.” (See also: Spare a Rose. See also also: CGM Medicare Coverage. See thrice-so: DPAC)
I’m hopeful it was an interesting panel discussion to listen to; I learned a lot by listening to my fellow panelists. Secretary Roberts repeatedly voiced concerns about the different factors that play into health (socioeconomic, literacy, etc) and urged discussions about improving society’s views on proactive health efforts instead of reactive ones. Dennis Keefe voiced hopes for true universal healthcare and how we can transition to that system most effectively. Michael Hudson made an excellent point about throwing bias and stigma aside when communicating with one another; we aren’t just “the insurance guy,” or “the patient.” Each panelist brought their unique flavor to the discussion, and I did my best to inform this EMHL about the crucial need for input from patient perspectives.
One of the other panelists mentioned that high deductible insurance plans force patients to have “skin in the game,” but I’ll counter that being responsible for paying doesn’t give us skin in the game. We’ve always had skin in the game. Now we have a voice at the table, and it’s high time we raise it for the betterment of our communities.
I’m proud to work with diabetes organizations, but I’m prouder still to work for people with diabetes. This community, and all perspectives in it, have improved my life and my health in ways I’ll spend the next few decades gratefully and respectfully repaying.