Background

A key component of Aligning Forces for Quality (AF4Q) is engaging the people who get care—patients and their family members, consumers, and consumer representatives (generally referred to below as “consumers” for brevity)—in efforts to improve health and health care. Consumers bring a unique perspective to discussions and decision-making, providing a reality check about how they access and experience care, the challenges they encounter, and the barriers to and facilitators of managing their own health. In a health care environment marked by competing interests and related constraints, consumers are often more free than other stakeholders to speak difficult truths. This perspective and position makes consumers powerful agents for health system change.

Consumer engagement has been a goal of AF4Q Alliances since the start of the program.Each Alliance was expected to include representation from people who “get care” along with those who “provide care and pay for care” on its leadership team. Alliances were subsequently expected to include both individual patients and consumer advocates (those who represent a larger constituency) on those leadership teams and on committees or working groups.

Consumer participation in regional health improvement collaboratives can help shape and apply best practices for obtaining and using information about where to seek high-quality care, cultivating consumer demand for high-quality services from their providers, and helping patients choose treatment options wisely.^[1] Both at the policy and implementation levels (e.g., at medical practices), involving consumers in program development and quality improvement draws on examples from outside healthcare. Consumers across many industries apply pressure that yields innovative ways of increasing productivity, reducing prices, improving quality, and expanding choices.^[2]

When AF4Q launched in 2006, best practices for bolstering and maintaining consumer engagement in health initiatives were still a work in progress.^[3] The Robert Wood Johnson Foundation and the AF4Q National Program Office (NPO) offered tools, resources, and technical assistance to help Alliances onboard and involve consumers in their efforts, primarily through the National Partnership for Woman & Families. Since then, the scale and interest has grown. Growing emphasis on quality and cost transparency and inclusion of patient engagement in patient-centered medical home (PCMH) criteria are among the examples of the turning tide. The Patient-Centered Outcomes Research Institute (PCORI) has positioned consumers in decision-making roles since 2010.^[4] Consumers have become a transformational influence at the national level, helping shape policy around care delivery and payment.^[5] As consumer engagement activities spread, lessons learned from AF4Q Alliances can help answer questions about how to implement, expand, and strengthen consumer engagement practices in all efforts—including in governance and in direct practice quality improvement. Some of these key lessons are outlined in the following sections.