Advertise Here

Deliver your message to thousands of readers every day.

Our readers are influential opinion makers - politicians, journalists and activists.

Our latest headlines

About Us

The California Progress Report is published by Frank D. Russo, a longtime observer of and participant in California politics.

About Frank Russo.
About California Progress Report.

Got a news tip? Want to write a guest column? Contact Frank here.

Books

Taking Consumer Representation Seriously on Health Care Issues

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.

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 representing 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 representing consumers, who are, in our estimation, the point of this whole health care enterprise in the first place.

Health Access California is a statewide health care consumer advocacy coalition of over 200 groups. This article has also been published on the Health Access Weblog.

Posted on June 15, 2008

Comments

Thank-you for the Consumer Representation article. We must all ask ourselves "Who speaks for the consumer?" because it is not an easy question to answer. The focus of my work for the past ten years has been on informing and empowering the public to assume a greater role in assuring the quality and the safety of their health care.

Consumers have no voice largely because they are not educated about the health care system and they often are confused about their own treatment or hospitalization, let alone being able to comprehend the intricacies of the "system."

I decided to try to intervene earlier in the process by educating the public about topics such as their health care team and it's hierarchy, medical error reduction, infection control and prevention, informed consent and second opinions. Once people understand some basic concepts, it becomes much easier to see how all of these issues are influenced by the system and its inadequacies.

As you stated, consumer empowerment absolutely must originate from consumers and patients will become engaged and empowered by educating themselves and then sharing their information with others, by relaying their health care experiences and by finding some of their own health care solutions.

I have a website www.TheEmpoweredPatient.com and I have written a consumer guide by the same name entitled "The Empowered Patient: Hundreds of life-saving facts, action steps and strategies you need to know." The information presented in this book is the starting point for patients to become knowledgeable about health care issues, to be better able to assess the information presented to them by medical professionals, to recognize potential hazards and to take intelligent, decisive steps once they have identified problems.

Consumers who posses a higher level of understanding about the medical system and how it works will also have higher expectations of the quality of care they are entitled to and the level of participation and safety they should demand.

if patients today were armed with the right information they could unite as the largest, most cost-effective lobbying group in history. Medical patients already possess strength in numbers. They just haven't put their extraordinary power to the test.

Thank-you for devoting time to this important issue and working to increase public awareness and involvement in the quest for patient empowerment.

Regards,
Julia Hallisy

www.TheEmpoweredPatient.com

Posted by: Julia Hallisy at June 15, 2008 07:24 PM

Get Email Updates

Want the California Progress Report by email? Once a week, we'll send you the latest and greatest headlines.

Stat tracker