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Teachable Spirit

by Libby Hoy

Last week, I had several opportunities to learn from people working hard, collaborating and putting tremendous effort into hard wiring person (patient) family centered care. I thought I would share.

At University New Mexico Health, I learned the value of pulling together an interdisciplinary team of PFCC champions. Julia Grimes, Director of Child Life, assembled a team inclusive of Quality Directors, Clinical Staff, Social Workers, Executive Team members, Nurses and Managers and parent Leaders from Family Voices, LEND and other local community organizations. Together this group dug into the presentation and participated fully, creating the roadmap for integration of PFCC practice across the organization. Many of the participants were meeting each other for the first time, which is not at all unusual in large health systems. Opening the door to interdisciplinary collaboration broadened the vision for what’s possible in PFCC at University of New Mexico Health.

Next stop was at the National Coordinating Center (NCC) for the Quality Improvement Network – Quality Improvement Organization (QIN QIO) work. For those of you who are unfamiliar with the QIN QIO structure, I encourage you to take a moment to acquaint yourself. The QIN QIO, through leadership and support by the NCC, has been integrating medicare beneficiaries into their work by developing Beneficiary (Patient) Family Advisory Councils. This is hard work. There are few national or state based efforts to draw experience from. I learned the value of patience, trust and collaboration in these efforts. It makes me think about the ‘sticky’ points of collaboration. The convergence of differing perspectives with the goal of co designing solutions. The basis for navigating the collaborative ‘sticky’ points is remaining committed and active in the process. When there is lack of mutual understanding and/or expectations, all participants in the collaboration must remain focused on moving toward a co design solution. It’s hard work, but I also learned again the commitment the NCC has toward authentic engagement of patients (people) in this effort. Great work, NCC Team!

On my flight home from Denver, I read the evaluation comments from a presentation I gave last month. Although I received some very encouraging comments, the one that is sticking with me read “I still think this (PFCC) is a fad. I’m not sold”. I’ve learned that although we have made great progress implementing PFCC and engaging patients, families, people in their care and in co design, we still have a lot of work to do in our current health system.

Returning back to Long Beach for the American Geriatric Society annual conference, I met with Ula Hwang and Kevin Biese, Co Leads for the Geriatric Emergency Dept. Collaborative. These two physician leaders were not only engaging patients and caregivers in the project, but they were actively seeking strategies for doing so in authentic and sustainable ways. They and their team embody the term “Teachable Spirit”. In fact, they welcomed the idea of having a care giver share her story at the kick off meeting. Robin LaFerrara, daughter and care giver for two parents living with Alzheimer’s, participated in the meeting and shared her challenges in navigating multiple systems of care, including the Emergency Dept. I learned again the power of first person narrative. As Robin shared, she opened the door to others in the room to take off their professional hats and connect with their own human experiences.

Sitting in on a panel discussion on Person Centered Care, I heard Dr. Kenneth Brummel-Smith MD, speak of Person Centered Care as “evidence based practice individualized”. I also learned from Amy Berman from the John A Hartford Foundation, the benefit of moving to the term Person Centered Care. Her point being that if we are really seeing the whole person, then we see the in the patient role but we also see the family, we see the values, priorities and preferences of each individual. I totally agree. My struggle is that I see a lot of the healthcare work force still unsure of what this all means. As you see in this piece, I am using both terms. It’s an evolution of not only language but of practice as well. Thank you, Amy for guiding us gracefully toward progress.

On Friday afternoon, the Planning Team for the Patient Priorities Research Agenda Community met at the PFCCpartners office to plan the November Conference. This interdisciplinary team is building on the work done in the CareAlign project to improve coordination of care for older American’s with chronic and multiple conditions. In this next phase, funded by PCORI and the John A Hartford Foundation, we are together building a research community to understand how patient priorities might drive care. Janet Austin, a Patient Family representative participating on the planning team, introduced us to her new web based program Hope Springs Village (www.hopespringsvillage.org), to help people in chronic disease pain to empower themselves to make positive health choices and actions toward improved mind, body and spirit. I learned from Janet the power of doing for others can have to create strength in your own purpose.

I’m so grateful to be part of such a vibrant learning community. Each one of us has the capacity to create space for persons, patients and families to fully engage in their care and in co design. I hope that you will join us on this journey!

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