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Reflections, Observations and Learning: Notes from a Patient at the PCPCC conference

4:00 a.m. wake-up on October 11, 2017 sounded early. That said, I didn't wait for the alarm to go off as I was really excited to return to D.C. and hear more about what new initiatives were being discussed at the Patient-Centered Primary Care Collaborative conference.

What makes my attendance unique is I was going as a patient... one who would never have seen himself arriving at the Westin hotel and checking in with policy makers, physicians, nurses, consultants, and other healthcare workers to discuss the innovations taking place in primary care and working to see how the shared principles that have been adopted by more than 200 healthcare organizations were being put into practice to transform primary care in the United States.

What could I possibly provide to this room full of brilliant minds? Well... I hope I was able to offer two specific things to my new colleagues:

1) I could speak authentically as the voice of a person with a life that started in poverty, with an alcoholic father (who was killed when he pulled in front of a train when I was 9), as a kid who was the first in his extended family to go to college (and ultimately complete a PhD in Higher Education Administration) and finally (and most importantly for this audience) as a patient with heart disease, and

2) I could speak from my previous professional life as someone who helped to build communities of mostly 18-year- old students in residence halls when I had a senior role in University Housing at the University of Michigan.

How might my perspectives help assure primary care practices can produce better care at lower cost with happier docs (and other healthcare workers)?

The conference opened for me by meeting other patients/caregivers/family members to discuss our "conference within a conference." The idea was that we could question and comment on what was happening on the stage from the perspectives that were uniquely ours-- we were the people (the patients) who were the subject of the majority of the speakers.

As I sat next to my own Primary Care Physician (with specific instructions from my bride to ask about the bump on my nose and my swelling right knee), I was acutely aware of these 3 thoughts throughout every session and kept thinking "how might we..."

A) The patient voice about WHY this matters so much was often missing during the presentations and panels. Just having someone on the panel who was a patient would have a lasting impact on this audience.

How might we assure that at every medical conference there is a patient story/voice to make real the topics being discussed?

B) I think it is increasingly important to mobilize those of us who are patients to insert our voices/ideas/innovations and perspectives into the mix. We must find ways to level the playing field to break through the long-standing and embedded deferential culture that exists between patients and their healthcare teams.

How might we work to assure that patients feel their ideas/questions are important, listened to, and implemented? How might we assure that those who are very accomplished don't inadvertently and unbeknownst to them reinforce this deferential culture?

C) Stories are powerful and evidence shows it is often what moves those in power to decide.

As I think about my past, I wonder-- how might we engage patients whose background is like mine- to truly partner to help us see the impact of practice decisions, policy decisions and financial decisions in primary care?

In addition, how might primary care find patients to partner who are not in healthcare fields or without formal education?

The more patients we can find to partner and learn what the concerns are in primary care that are educators, engineers, architects, designers, homemakers, plumbers, etc., the better the chance will be that new and innovative ideas will emerge that changes the landscape for primary care.

We just need to be open to see the world from a lens that is not our own... those of you in health professions can't "un-know" what you know and the more you remain open to see from a framework that is not your own, the more likely innovation occurs.

For me, I'm looking forward to working with Rob and finding ways that the work he does in primary care at the University of Michigan has patient partners that can look at the problems in new and unique ways.

Finally, I'm hopeful that every patient finds a primary care health team that shows the kindness, trust, care and compassion I receive as Rob stares at my nose in the corner of the gate at the airport to tell me --- I think this is one of those situations where it is indeed a WISE Choice to send you to a dermatologist to take a look-- and he explains why... all patients should receive such care... I know how lucky I am!

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