Congressman Patrick Kennedy (D-RI) re-introduced the “Personalized Health Information Act” at a Capitol Hill briefing today to incentivize adoption of personal health records (for details of the precursor PHR legislation from the last Congress, see my January 3 post: Patient-Centered Health Information Technology in the New Congress). Some of the observations about the issues that most struck me and their relevance to information therapy (Ix) about the two-hour briefing follow.

First, unlike the initial unveiling of the bill last Congress, Kennedy announced this version with a wide array of supporters. The briefing featured: a Republican co-sponsor, Dave Reichert (R-WA); provider and health plan sponsors from post-Katrina Louisiana (LSU Health Network, Louisiana Blue Cross Blue Shield); representatives of organized medicine (American Academy of Family Physicians); advocates from the voluntary health world (American Heart Association); and usual-suspect industry supporters (Microsoft, Medem, Allscripts).

Second, the message was clearer that this is less about health information technology (HIT) than about better care. Specifically, the congressman and his staff (Michael Zamore) drove home that PHRs are a vehicle to proactively delivering better, more personalized communication and care. It is interesting to note that, although it advocates vigorously for HIT, the specific mission of the House 21st Century Health Care Caucus (of which Kennedy is Co-Chair) is “to transform the health care system through information and technology to improve patient safety and health care quality, lower costs, and coordinate care.” Note that it specifically is not about IT but “information AND technology.”

Third, and somewhat related, Kennedy (and others) made the point that even though “people aren’t clamoring for ‘health IT,’” those dealing with the challenging health care issues want the functionality of PHRs whether they call it that or not. The congressman noted that people with chronic conditions know how difficult it is to get the health care information they need and they are increasingly expressing that need in various ways. Or, as Medem CEO Ed Fotsch analogized, “I don’t care about the bank’s information technology systems, but I want the ATM to work.” He suggested that this legislation can help to harness the consumer as a market driving force, similar to what happened in the banking industry with ATMs.

Fourth, the focus on advancing proactive delivery of personalized communication to improve care was shared by all of the legislation’s sponsors. Most interesting to me was that Microsoft specifically was focused on information therapy (even if MS Corporate VP Peter Neupert did not use that terminology or “Ix”). In focusing on the fact that health care is essentially an “information management issue,” Neupert’s language literally paraphrases the informal Ix definition. He described health care being “about getting the right information to the right person at the right time and making sure that information is accurate.”

Neupert also said that “the data is a necessary but insufficient condition…for making the right decision,” much the point of the Issue Brief I authored for the California HealthCare Foundation, “Lost in Translation: Consumer Health Information in an Interoperable World ” (http://www.chcf.org/topics/view.cfm?itemID=114624). Or, perhaps more to the point, in the Q&A, he also agreed with my amendment that the “right information” must not just be accurate but also be meaningful and understable to the average consumer. In fact, several of the panelists were sufficiently interested in this issue to respond to the question. People recognized that this important legislation represents an important beginning in the government’s effort to advance personalized communication and strengthen patient-clinician relationships.

It’s clear that the raw data populating PHRs (often deriving from administrative and clinical data sources) have little intrinsic meaning to the average consumer without some mechanism for translating that data to practical and usable information. We need to develop a blueprint for patient-centered HIT that provides infrastructure for PHR adoption and the practical use of such tools by a diverse range of people with varying needs and backgrounds.

The IxCenter is embarking on such a project and you can get a taste of it from some of the work we’ve been featuring on PHRs and related topics (see our Web site at www.ixcenter.org). By the time of our annual Ix conference (October 8-10 in Park City), we anticipate this work being in full swing, so make plans to join us there. In the interim, interested parties should contact me (jseidman@ixcenter.org) to find out if their work has synergies with ours.

–Josh

This entry was posted on Thursday, March 1st, 2007 at 9:46 pm and is filed under Inside the Beltway, PHRs. 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.