Posted October 28, 2008 by Lygeia Ricciardi
Last week at the Health 2.0 conference I saw an explosion of tools and services that help consumers put their own health data to good use. DestinationRx helps you avoid adverse drug events and find cheaper alternatives to the medications you are using; PatientsLikeMe lets you share your experience with a specific health condition, like MS, and learn from others who have it; Keas (the not-yet-live service founded by Adam Bosworth, formerly of Google) will let you manage behaviors like diet through a clear graphical interface.
All of these applications and many others require the same input to provide value: health data about individual consumers. But a comprehensive, accurate, longitudinal health record, especially in electronic form, is hard to come by—which is the gap platforms such as Microsoft’s HealthVault and Google Health are trying to fill.
There is, in theory, another source well-positioned to address that need: RHIOs. Regional Health Information Organizations (RHIOs) aggregate health information about patients electronically from numerous providers, labs, clinics, drug stores, etc. RHIOs are often built primarily to assist providers in delivering better, more-informed care. But they could also serve as a perfect starting point for consumers who want to take a more active role in their own health… if and only if they let consumers access their own data.
Such access should not be assumed. Take the case of New York State, which is spending more than $200 million, largely in tax dollars, on health IT--more than any other state. New York just issued for public comment a set of draft policies. Among them (see Section 5.2 of the “RHIO Policies and Procedures” document), state-funded RHIOs are not required to give consumers access to their own health data, even though the RHIOs are already aggregating it.
To me, this seems like a terrible missed opportunity. If we really want to empower consumers, we need to let them access and use their own health data. Not just to take advantage of PHRs and other cutting-edge services and applications, but also to help them fix potential mistakes in the record, and make informed decisions about how they want their data to be used (or not used). And shouldn’t consumers also be able to take their data with them, regardless of whether they leave a particular provider, employer, insurance company, or state?
Aetna gets it. (See yesterday’s post.) Shouldn’t policymakers? What do you think?