Health Information Technology

Defining Consumer Representation

Although it is true that all people are consumers of health care in one way or another, authentic consumer input can only be achieved by engaging consumer advocates who do not derive their livelihood from the health care system. In general, the term “consumer advocate” refers to an individual who works at a nonprofit, mission-oriented organization that represents consumers or patients.

Because consumer organizations do not have a financial stake in the health care system, their health care agendas are not generally influenced by economic interests, making consumers potential game-changers when they are included on equal footing with other stakeholders: they are more likely to challenge the status quo in ways that ultimately benefit everyone.

Consumer advocacy organizations can include faith-based groups, organizations that work directly on policy issues from the consumer perspective, and groups that have broad-based constituencies and missions that touch on a variety of issues in a community such as housing, health care, education and employment. They operate at the state, regional or national level; others work at the community level; some work at both. Some center their work on the needs of specific populations, such as older adults and children, while others focus on a specific disease, such as asthma or cancer. Every group may have its own individual focus, but they all share a single mission: to improve the quality of life for their constituencies.

The National Partnership will provide assistance to any initiative leader working to ensure robust local consumer representation. To request assistance, click here.

Examples of Consumer Advocacy Organizations

Consumer advocacy organizations that serve women, children, older adults, minority patients, and workers, such as:

  • AARP
  • The Arc
  • Area Agency on Aging
  • YWCA

Faith-based organizations, such as:

  • Churches
  • Mosques
  • Synagogues
  • Association of Professional Chaplains
  • PICO- Faith-based community organizers

Broad-based or policy-focused organizations, such as:

  • Citizen Action
  • Consumers Union
  • Kiwanis Club
  • League of Women Voters
  • Lion’s Club
  • Literacy Council
  • Neighborhood Associations