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Partnering to Reclaim the Core of Care

New York, NY

In April 2014, the Macy Foundation convened an extraordinary group of thought leaders—which I was privileged to co-chair with Terry Fulmer, PhD—to recommend strategies for “Partnering with Patients, Families, and Communities to Link Interprofessional Practice and Education.”  Our report was bold, calling for changes in health professions education and health care delivery, and for regulatory and payment reforms, to facilitate partnerships with patients, families, and communities. It further called for investment to enhance capacity among patients, families, and communities to participate as full partners in health professions education and clinical practice, raising consumers’ voices wherever their health care is discussed—from classrooms to clinics to the halls of Congress.

So, how’s it going? What progress has been made toward this vision of more informed, dynamic and fulsome partnerships in health care? Are patients, families, and communities engaged in training health care professionals to collaborate more effectively in care decisions? Are we moving past the notion that health care can be “delivered” to patients towards a more collaborative notion of “co-creation” of care? How are the education and service landscapes changing?  I believe there is cause for cautious optimism, but perhaps for reasons we didn’t anticipate during our conference in 2014.

Finding Common Ground
Health care in all its facets has evolved significantly over the last few years; in many ways for the better, notwithstanding the uncertainty of the immediate future.  While broader issues such as growing market share concentration and uncontrolled pharmaceutical prices threaten our country’s health, I am heartened by a rumbling at the roots of health care: in the relationships between clinicians and patients.  I have observed this in clinical encounters, in conversations about redesigning services, and in high level policy reform discussions.

There seems to be developing a shared sense of what truly “patient-centered care” would look like (the concept having narrowly escaped the talons of myriad marketing firms) and how essential it is to the mission.  Clinicians and patients are uniting in shared exasperation to reclaim the concept and recommit to mining the power within it. After all, health care without patients at the center—without sacred relationships at the core—is no more than a business, and that doesn’t ring true to clinicians or their patient partners.

A recent example from my own experience serves to illustrate the shifts to co-designed curricula and to co-created care. Using video excerpts from a module co-created by researchers and young adults about their experiences living with depression, we created and piloted a three-hour, online course for third-year medical students during their primary care clerkship, with support from a Macy Grant. While the results are not yet fully analyzed, the students’ own words spoke volumes about the power of their learning from a patient co-designed curriculum:

“I listened to Maya talking about a time when her anxiety was so debilitating that it had prevented her from buying shampoo. I found myself thinking, “hmm that seems extreme” but I refocused myself by remembering that I have my proverbial shampoo and that she and I are not so different. I think that often we default to polarizing based on our differences because it’s uncomfortable or difficult to recognize something similar in ourselves. But we are connected through our shared experience of humanity and each of us has our shampoo. It’s not until we recognize ourselves in each other’s eyes that we can begin to make a difference.”

The power of patients as teachers, sharing their experiences and helping design curriculum, should not be underestimated. While few programs have expertise engaging patients as teachers, it is a pedagogical enhancement well worth pursuing for its effectiveness teaching future clinicians the value of partnering with their patients, and how to do it.

Unexpected Champions
Along the way, there has also emerged a growing consensus that clinician well-being and satisfaction are inextricably linked to high quality patient care, and patients have become champions for their clinicians’ wellness.  Newton missed a law of physics when he failed to assert that “you can’t give what you don’t have”—at least not for long—and patients understand all too well that “if Mama ain’t happy, ain’t nobody happy!”  Turns out this goes for doctors and nurses too.

Clinicians who see their patients as full partners will find powerful allies in the struggle to maintain humanism in health care, to ensure clinicians find joy in their work. For example, recent research shows widespread clinician dissatisfaction with the primacy of electronic health records in the clinical encounter. As it happens patients, too, are dissatisfied when the computer screen gets more attention than they do. Professionals seeking to change this dehumanizing dynamic would do well to include patients’ voices in their efforts; patients are the armor they should wear when wading into these battles. As reimbursement is increasingly tied to patient experience, clinicians can and must make effective use of these voices to help achieve humanism and healing in health care relationships. Don’t leave home without us.

This holistic understanding of the interconnectedness of all our health is promising, and the maturing partnership between patients and clinicians bodes well for facing the challenges to come. When all the bells and whistles of complex systems are stripped away, health care at its core is about sacred partnerships, bespoke collaborations that foster healing for all involved. My own sense is that it is this partnership that will ensure that patients are at the center of health professions education and of “patient-centered care,” and that “value-based care” is also values based. And when patients and clinicians find our way home to this sacred connection, we will begin in earnest to recalibrate health care to prioritize health and caring.

Meg Gaines, JD, LLM, co-chaired Macy’s April 2014 conference and is Director of the Center for Patient Partnerships at the University of Wisconsin.

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