The volume of opinion on the potential disruption to the health care delivery system of personal health records (PHRs) seems to be exploding. When leading mainstream peer-reviewed journals like The New England Journal of Medicine (which has three articles on the subject in this week’s edition) highlight the potential of PHRs, it suggests that something may really be going on.

Of course, we’re still a long way from realizing that potential. Although this is not a fact that many experts dispute, I remain concerned that some critical issues may get lost in the intense focus on privacy and security. Most notably, in the debate in the Journal and other places, there remains little emphasis on the importance of user-centered design and the connection of personal health data to content that helps explain what those data mean.

When the Pacific Northwest health system, PeaceHealth developed its PHR as part of the Robert Wood Johnson Foundation “Pursuing Perfection” project, they realized that the only way to ensure that the PHR really met their patients’ needs was to ask them and observe them. According to Dawn Gauthier, PeaceHealth’s Web Usability Designer, “Patient-centered care = User-centered design.” When she presented to the Institute of Medicine’s Roundtable on Health Literacy last month, she indicated that PeaceHealth determined that they needed to figure out patients wanted to accomplish by observing them and listening to them tell their stories.

The Department of Veterans Affairs (VA) has already launched electronic access to personal health data for veterans through My HealtheVet. They recognize that, to maximize its utility, they need to understand veterans’ experience in using the portal, so they are undertaking a survey of veteran users, to be followed up with more detailed focus groups and personal interviews. Moreover, the VA also realizes that a big component of My HealtheVet adoption will be the enthusiastic cooperation of VA clinicians, so they are surveying them as well.

I strongly believe that we need to build transparency into the design of our HIT systems. It’s also critically important that we not assume that “transparency” or “electronic availability of data” directly equates with access. Consumers cannot necessarily make sense of the data that flows from clinical and administrative data sources. Think about it: If I posted this blog entry in Greek, would you be able to understand it? The PHR that merely tells the consumer, “HbA1c = 8.6%, LDL = 146 mg/dL,” etc., may be “all Greek” to him or her.

That doesn’t mean that we shouldn’t do it. It just means that we have to build the information infrastructure to contextualize those data. For example, when Group Health Cooperative makes lab values accessible through a secure portal to all its members, it links every test to content that explains what the test is all about.

When organizations do this, their users experience something that gives them intrinsic value in managing their health. That’s what ultimately will lead to widespread adoption of PHRs.

…And that’s why these issues will be a central theme at our 7th annual Ix conference, “WIxRED: Next-Generation Patient-Centered Care,” June 12-13 at the Newseum in Washington, DC.

This entry was posted on Friday, April 18th, 2008 at 6:14 am and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.