The Patient and Family Engagement framework is built on the fundamental principle that we cannot achieve an improved and patient-centered health care system unless patients are more than passive recipients of directives from the medical care system[WA1]. Informed by years of research, the framework reflects [WA2] patients, families, and health care professionals working together as partners to improve health and to redesign the parts of the system that are not working.

The framework describes:

• How the role of patients and families can be expanded across all critical areas of health care—making them true partners in determining how health care is organized, delivered, and allocated; and
• That engagement is not just about what patients do. It’s also about the opportunities created to ensure their participation in decision-making and defining agendas at all levels: at the point of care, in health care organizations, and in the policy arena.

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The full framework is outlined in Carman, et al., “Patient and Family Engagement: A Framework for Understanding the Elements and Developing Policies and Interventions,” Health Affairs, Vol. 32, No.2 (February 2013). 

Using the Framework

The Patient and Family Engagement Framework is a vision—one that encourages all of us to collaborate and examine how to push and expand efforts to invite and bring patients and families to the table as partners in improving health and health care. We hope the framework serves as a catalyst to inform ideas, interventions, and policies that support greater participation of patients and families in health care.

Moving from Ideas to Action: A Roadmap for Patient and Family Engagement

A Roadmap for Patient and Family Engagement in Healthcare Practice and Research, developed by AIR in conjunction with the Gordon and Betty Moore Foundation, builds on decades of evidence, knowledge, and experience, including input from more than 70 clinicians, health care leaders, patients, families, insurers, payers, and researchers.

The roadmap describes eight change strategies that reflect priority areas for action related to patient and family engagement[WA2] . These are areas in which:

• There are opportunities to drive progress toward key patient and family engagement-related milestones and outcomes.
• Progress would have a significant impact on patient and family engagement overall.
• Change is necessary and possible, although not always easy.