COMMENTARY: Consumers in RHIOs: Who Is Really on Their Side?

COMMENTARY -- In a recent article "Consumers at the Gates: Resistance Is Futile" I tried to dispel the confusion around the term "consumer-driven healthcare" and proposed a better definition of what it should really stand for. The next obvious question is how well do RHIOs live up to the "consumer-centric" promise?

a symbolic coincidence, two weeks in between these two articles brought us the resignation of the National Health-IT Coordinator, David Brailer, M.D., who was quoted saying: "Surely some people will use my leaving to attack the president or to say the program is not going well." While I do not think that nothing good has come out of ONCHIT, I find it quite telling what Brailer's new assignment is going to be, according to Secretary Leavitt: "Brailer has agreed to serve as a consultant to HHS to help lead the President's healthcare transparency initiative."

This is an admission that the NHIN/RHIO movement has not paid enough attention to consumers.

Why? Because transparency of data on availability, relevance, quality, and pricing of healthcare is the issue that really matters only to consumers and puts the pressure on the industry to adapt to the disrupting marketplace. Transparency as a concept has received little if any attention in most RHIO efforts. Why would it, when most RHIOs have been established by various consortiums of health plans, hospitals, physician groups, employers, and government entities that have their hands full negotiating the competing interests among themselves?

Therein lies the problem.

A successful National Health Information Network needs support from the general public. How can the industry expect this support if the true interests of consumers are under-represented? Slow movement of health-IT bills in Congress is a symptom, not the cause, of the problem. Still, new groups are emerging in Washington, D.C., to represent consumers in the health-IT debate. Patient Privacy Rights Foundation (PPRF) is the most prominent example.

Sounds great? Not so fast!

The problem with many consumer policy groups is that they are primarily designed to stop the industry practices they feel threaten consumers, rather than develop practical solutions to actually serve the consumers in question. At this juncture, we risk national health-IT debate degenerating into an argument over the proper level of privacy regulation, instead of day-to-day painstaking work to build consumer interests into the nuts-and-bolts of RHIO designs. Can anyone who made real impact representing consumers at that level please stand up?

This is where open media and blogs that I discussed in the earlier article can make a real impact. In the electoral politics, the voices from "online grass roots" already shifted the dynamics of the debate in Washington. In healthcare, we are in the earliest stages of this process. Consumer is the "sleeping giant" of health-IT and is yet to truly flex the market and political power.

So what is needed right now? True industry leaders willing to align themselves with consumers' best interest without conflicts and reservations. Transparency is a litmus test: If you find yourself rationalizing why consumers should not have access to certain information, you have just given up the high ground to a competitor willing to open up and win their trust.

I will be speaking more on the emerging role of blogs and open media at the Spring 2006 Consumer Directed Health Care Conference and Expo on Tuesday, May 9.

Dmitriy Kruglyak is publisher of The Medical Blog Network. E-mail:
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