Taking Consumer Representation Seriously on Health Care Issues

[courtesy of California Progress Report]

By Anthony Wright
Executive Director of Health Access California

Good Health Wonk Review just published at the Health Affairs Blog, including our post on budget cuts being a big threat to health reform. Lots of good posts.

The Health Affairs Blog had a previous post of note, "Who Speaks for the Health Care Consumer?" Ron Cunningham quickly debunks the mis-used term of "consumer-directed health care," asking "When did consumers ever stand up and demand that they be allowed to pay more when they are sick?"

Taking the question seriously, he reports that "Unresolved questions about the meaning of consumer engagement in the health sphere surfaced Monday in a lively conversation among health services researchers at the Academy Health Annual Research Meeting in Washington." Here's a provocative paragraph:

“Panelist Shoshanna Sofaer of the City University of New York bluntly described the term “consumer empowerment” as an oxymoron, because of the implication that if power could be bestowed on a consumer, it could equally well be taken away. In general, Sofaer said, as matters now stand, “consumers have no voice” in the workings of the health system. Her view was seconded by Ed Mendoza of the California Office of the Patient Advocate, who suggested that consumers have little or nothing in common with powerful “stakeholder” groups. Inviting consumer representatives or advocates to participate in a stakeholder collaborative could amount to little more than tokenism. True consumer activism is more likely to begin with a negative reaction to what incumbent stakeholders are doing, Mendoza said.”

It's absolutely true that there are lots of task forces, commissions, and decision making bodies in the health care world and in state and federal government where there is a token consumer representation (although you'd be surprised at how many decision-making entities don't even make that effort.)

Placing a random "consumer" or two on a board may introduce some good questions and thoughts to a discussion, but is of limited use: they are often outnumbered, but often don't come to the table to with the information, political savvy, or political power to make a difference.

Sofaer is right: consumer empowerment needs to be done by the consumers, not the government. As a consumer advocacy coalition, we don't believe that we are "empowered" by government officials, but by the organizations and individual members and constitituencies.