Health IT World has published my second installment about consumers in health IT. While the first part focused on setting the stage, the latest piece is about consumer's role in RHIOs.

Regular readers of this blog would not be surprised that I find the consumer representation sorely lacking. You can read the whole article for the reasoning, but here is the basic conclusion, quoted:

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 also remarked that many "consumer groups" are more interested in policy advocacy and making headlines instead of the hard work of developing practical solutions and put out the call to prove me wrong:

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?

I heard from David Lansky at Markle Foundation / Connecting for Health and from eHealthTrust, reassuring me of their support for consumer's rights and interests.

Having followed both projects for some time I have no doubt about their intentions and leadership. However, it says something about the state of our industry, when the leaders are only at the stage of creating a patient-driven model for personal health records (PHR). In my view, this is simply a bare minimum, the price of entry, something that consumers would take for granted and would be enraged if it is not in place.

What is needed instead is an active representation, a way to help consumers navigate the system and make the decisions best for them. Transparency is only a start.

But there is no doubt that the void will get filled and we would not have to wait for this too long.