Representation, Roles, and Responsibilities

“We’re all health care consumers” is true, but not enough; stakeholder definitions are important. It is not a criticism of physicians or other stakeholders to say they have different perspectives of health care, nor does it invalidate their experiences as patients. Airline pilots, flight attendants, and industry executives may have experiences as passengers, but a committee focused on improving air travel also benefits from members who are just passengers. Similarly, people without a financial stake in the health care system have a unique perspective. In health care, it’s important not only to include that perspective at the decision-making table, but also to validate it as separate from others. Both individual consumers and consumer advocates (those who represent a consumer organization with a larger constituency) have important roles to play.

Consumers can and should participate meaningfully at all levels, matching individuals with roles and activities that align with their interests, skills, and expertise. Given a receptive environment and appropriate support, consumers can offer meaningful input into even technical aspects of health system transformation. There are several valuable frameworks that outline effective opportunities for engagement depending on a given consumer’s level of activation and other factors. Humboldt County, CA, developed such a framework after learning that consumers skilled and enthusiastic about engaging in one arena may not be equally suited to another. A thorough framework published in 2013 outlines levels of consumer engagement and related considerations.

Build on existing relationships to identify and invite good candidates to participate. In practice-based work, like that in Humboldt County, South Central Pennsylvania, Maine, and Oregon, providers and staff should identify patients who would be good candidates and invite them personally. For community-level work, those seeking to involve consumers should leverage relationships with organizations whose constituents have a stake in improved health care quality. In Oregon, Alliance leadership includes representation from AARP, providing both input from that constituency and a conduit to relay information to AARP constituents. In Maine, an Alliance partnership with the Area Agencies on Aging has identified several engaged seniors to participate actively.

Make roles, responsibilities, expectations, and processes clear. Both in recruitment and in ongoing work, clear information about responsibilities and time commitments cultivates shared responsibility and accountability. In governance as well as practice improvement, written position descriptions and other expectations help ensure clarity. The Patient Engagement Toolkit provides some concrete examples for the practice setting.