Galaxies ago, in a decade far, far away, genius entrepreneur Jim Clark launched Healtheon on the premise that one giant Internet portal could unscramble all of health care’s tangled lines of communication, rectify its inefficiencies, and soothe its troubled soul in one brilliant masterstroke. It sounded good. The Internet was young, and people believe what they want to believe.

A decade later, the romantic essence of the Healtheon scenario is undergoing a revival. Fresh new players from outside the ponderous confines of health care’s legacy institutions are again making a bid to inject alternative pathways to change into this stiff and stuffy realm. Are the odds any different this time?

The most visible evidence of this uprising has been announcements in the fall from Google and Microsoft about new personal health record (PHR) products. Although the term is hopelessly imprecise, the PHR is legitimately conceived of as a means of consumer empowerment that could help mitigate health care’s notorious information asymmetries and the opaque and unbalanced relationships among patients, payers, and providers.

Google and Microsoft are merely the latest and largest players in the protean PHR space. Patient communities, small start-ups, venture capitalists, middleware entrepreneurs, forward-looking provider organizations, and nimble insurance subsidiaries are all vying for traction.

Vantage points on the unfolding story are, appropriately, proliferating on the web. The estimable Esther Dyson strikes a nice balance between enthusiasm and caution on the Health 2.0 blog, where she reports on a recent conference cosponsored by Matthew Holt of The Health Care Blog. On the same useful Health 2.0 site is David Kibbe‘s post on a rich and lively meeting last week in San Diego convened by the Markle Foundation.

Markle, a Health Affairs supporter, has toiled patiently among the legacy players in pursuit of connectivity, paving the way in many cases for the Office of the National Coordinator for Health Information Technology in its interoperability initiatives. But the foundation began with a patient-centered orientation to health IT and has now returned to this emphasis in its current work on a constructive policy agenda for facilitating optimal PHR development.

The sources of information with which to populate PHRs are diverse, including labs, pharmacies, hospitals, doctors’ offices, and insurers; and many technical and policy questions remain unanswered about patients’ access to these sources and protection of their personal data from unauthorized use. Similarly, consumers have kaleidoscopically different uses for personal health information. Patients and families with rare or life-threatening illnesses have an urgent need for in-depth and hard-to-find sources on science and treatment. Chronic disease patients need to understand recent research, best practices, and self-management strategies.

Information tools can support wellness programs for the healthy and worried well. Doctor-patient e-mail, access to test results, scheduling tools, and other communications conveniences can benefit any patient, as can a handy place to store and access vaccination records, school physical reports, medication lists, or other personal records or reference information on health conditions. The challenges of global standardization and interoperability that are salient in other domains of health IT policy seem to be still over the horizon in the embryonic world of consumer information tools.

Sharp debate surfaced at the Markle meeting over privacy policy, for example, echoing arguments last spring in the Department of Health and Human Services’ policy-setting body, the awkwardly-titled American Health Information Community (AHIC). Privacy advocates worry that that protections in the Health Insurance Portability and Accountability Act (HIPAA) — imperfect as they are — don’t even apply to the new players in the PHR space. But developers of new tools and products fear that HIPAA-like regulations will stifle innovation.

As one steps back, these problems pale by comparison to the underlying sense many partisans have about the power that useful consumer information may have to drive public demand for wider and speedier adoption of health IT. Neither government leadership or market forces have thus far served well to overcome inertia and passive resistance among those for whom change is perceived as disadvantageous or just too much trouble. As Dyson puts it, “It’s consumer demand that’s going to make it happen.”

Tags: Health IT