Taking consumer representation seriously…

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 AcademyHealth 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’s 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.

So Health Access California seeks to provide real consumer representation on board and commissions and the like. First of all, we work to build political power to represent consumers, as a stakeholder of equal or greater standing than the traditional “stakeholders” in the process. We work to build the biggest and broadest coalition of organizations that represent consumers to advocate for policy changes that would help their community. Health Access and other organizations not only then come with power and standing, but with accountability, that they are actually representating a constituency, albeit a very broad one.

(And for the record, we are organized for the positive goal of quality, affordable health care for all; we do often have a “negative reaction” to industry practices, but that’s because of the industry practices… we’d rather be focused on our positive agenda.)

And then there’s expertise. For example, Health Access is lucky to have Elizabeth Abbott direct our administrative advocacy, working to represent us at various agencies, and on various board and commissions. She often is the only (or one of a few) consumer advocates on a panel–but she has the backing of Health Access and our collective knowledge and resources, as well as her own experience running Medicaid and Medicare for CMS at their Regional Administrator until recently. This gives her the ability to ask the right questions, the savvy to sniff out when something sound wrong, and the ability to make a stand when necessary, and to ensure that people listen.

So consumer representation and engagement can be mere tokenism, but it doesn’t have to be be, if the representatives come with their own expertise, accountability, and organizational resources and power.

Finally, there’s just the numbers: why is it acceptable to have lots of boards and commissions with the goal of benefitting consumers, and consumers only have a seat or two, or are outnumbdered 10-1?

There’s much more work to do to have our health system be truly “consumer directed,” in the original and true meaning of that term.

One more thing: I sometimes dislike when decision-makers just call us “the advocates,” because that description robs us of our central role, as consumer representatives: we aren’t just advocating for advocating’s sake: we are representating consumers, who are, in our estimation, the point of this whole health care enterprise in the first place.

Health Access California promotes quality, affordable health care for all Californians.
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