Advancing patient and family engaged care by building the evidence base

Patient and family-engaged care (PFEC) – also referred to as patient-centered care – has been recognized as an essential piece of the national strategy for delivering improved care, patient experiences, and reducing costs.

In a nutshell, PFEC means explicitly engaging patients and their families as active participants in their healthcare, and realigning health outcomes goals to match their needs, values, and preferences.

Yet extensive acceptance of PFEC practices throughout the healthcare system has been lagging, hindered by persistent skepticism that the investment of resources required to implement these approaches will actually contribute to improved results, as well as ambiguity about the mechanics of how to bring the aspirations for PFEC into reality within organizational cultures.

In December 2015, the National Academy of Medicine (formerly the Institute of Medicine) charged a Scientific Advisory Panel to guide the Academy’s efforts to advance widespread adoption of PFEC, by assessing the empirical evidence base supporting PFEC approaches.

Earlier this year, the panel issued its findings in “Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care.” The paper introduces a framework that identifies specific elements key to creating a culture of PFEC, with associated evidence, along with practical examples of high-impact elements of the model applied in real-world settings. The framework makes the case for various culture change strategies that facilitate patient and family engagement and are backed by research results validating improved patient care, better outcomes, and better healthcare value.

Ann-Marie Rosland, M.D., M.S., U-M assistant professor of internal medicine, and research scientist at VA Ann Arbor’s Center for Clinical Management Research, helped develop the framework as a member of the panel, which was convened under the auspices of the National Academy of Medicine’s Patient & Family Leadership Network (PFLN), and is the first NAM panel devoted to this topic.

Rosland said she was impressed by the diversity of expertise and perspectives engaged in the panel’s work across the various dimensions of PFEC. The panel’s members represented a balance between researchers and PFEC “implementers” within health systems, and their assessment went beyond “traditional” patient and family engagement fundamentals by considering the impact of workplace culture, the physical environment, the role of empathy, cultural competence, communication, and other PFEC factors that may influence healthcare quality and value. The panel drew on scientific evidence as well as the experiences of practitioners and leaders.

“One potential impact this panel and report could have is in moving along implementation of practices that we already know can be useful in smaller settings,” Rosland said. “The framework lays out the evidence showing that patient and family engaged care really does impact patient outcomes and satisfaction, and it could help healthcare leaders build the case for using these techniques in a more widespread way, and guide research, program implementation, or program evaluation.”

Rosland provides the perspective of a researcher whose work focuses on how to better engage patients’ family members and supporters in helping patients manage their healthcare. She is also leads a workgroup within the national evaluation team for the Veterans Health Administration’s Patient Aligned Care Team initiative, which aims to implement the patient-centered medical home model (PCMH) for more than 5 million primary care patients nationwide across all of the VHA’s nearly 1,000 primary care clinics, making it the largest integrated U.S. health system to implement PCMH.

With the larger PFLN’s efforts now shifting toward disseminating the framework and supporting the implementation of practice changes based on its collected evidence, Rosland is optimistic that the panel’s guidance can do much to establish PFEC as a standard element embraced by all healthcare stakeholders.

“This is an exciting time for the engaged care movement, and it’s thrilling to know we’re able to use our research to directly inform changes in care.”