The path to a health care system where the vision of patient and family engagement is realized is a winding one, filled with twists and turns in a fragmented health care wilderness that too often seems to be about everything and everyone but patients.
But there are signs that patient engagement is moving from the margins to the mainstream as a crucial way to really advance the triple aim of better care, better health and lower costs. For example, at the June 14-16 AcademyHealth annual research meeting, so many sessions explored various aspects of patient engagement that attendees had to choose among sessions in the same time slots —a turn of events that would have been unthinkable just a few years ago.
For health care professionals and policymakers truly committed to centering care on patients and families and their needs and preferences, engagement can be a guide star in a constantly shifting health care landscape.
“Not putting patients and families at the center of the system is like having a car that’s designed around the needs of the mechanic instead of the driver,” said Kristin Carman, executive director of the Center for Patient & Consumer Engagement (CPCE), at an AcademyHealth session on the Moore Foundation’s Roadmap for Patient and Family Engagement in Healthcare Practice and Research.
Developed by the American Institutes for Research with the Moore Foundation, the Roadmap includes the collective input of more than 70 people—clinicians, health care leaders, patients, families, insurers, payers and researchers—and outlines a shared vision and language to help move patient engagement “from why to how,” said Carman. The Roadmap also provides examples of first steps patients, clinicians, researchers, payers, insurers and others can take right now—steps as simple as an invitation to a patient or family to share their views about their care or their experiences.
The Roadmap builds on the framework designed by Carman, et al., Health Affairs, 2013 that defines engagement as: “Patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system to improve health and health care.” In doing so, the Roadmap spans both the levels of engagement—direct care, health care organizational design and governance, and policy making—and the continuum of engagement—consultation, involvement, and partnership and shared leadership.
Working at the far end of the continuum, for example, involving patients in a root-cause analysis of a safety failure, can be a “game changer,” said Pam Dardess, director of CPCE, adding that people are incorrect in thinking it’s too difficult for patients to tackle complicated, technical issues. An audience member from the Medical College of Georgia concurred, saying his institution has “added patient advisers at the table to work through a root-cause analysis.”
Attendees at the AcademyHealth Roadmap session engaged in lively discussion, raising questions about whether health care law precludes aspects of engagement and questioning the role of consumer advocacy organizations in representing the voices and perspectives of patients. Moving forward, these types of discussion are important, but even more important is moving beyond discussion to action. As Dardess noted, “there has been some talk that patient and family engagement is becoming a meaningless buzzword.” The goal of the Roadmap is to ensure this doesn’t happen by uniting work in this area under a common umbrella, helping us understand how to best partner with patients and families, investigating pathways between engagement and outcomes, and defining best practices for affecting real change in our health care system.
Alwyn Cassil, principal at Policy Translation, LLC, is a consultant to the Center for Patient & Consumer Engagement