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Viewpoint Paper: The Limits of Free Speech: The PHR Problem

Patients own their medical records. This truth has had a difficult history for those of us who wish to have a single record of our health, wellness, and disease and want to convey that record to whomever we wish whenever we wish. The lack of interoperability among the many sources of our medical record, coupled with the hassle associated with obtaining a copy of one or more of the fragments of our record under the control of providers, has been and continues to be a consumer frustration. Hence the motivation, at least in part, for the movement toward Personal Health Records (PHRs).

There is no question that the patients own their Personal Health Records (PHRs)—at least the “untethered” type that is not controlled by a provider, employer, or payer. To the extent that the PHR contains the health, wellness, and disease information about a person, it could be the most complete record of such information. It can be conveyed by persons to whomever they choose whenever they choose. We are in the early phases of PHR development and, over time, progress will be made in allowing a more complete gathering of health, wellness, and disease information from multiple sources through electronic data and document transfer directly into a PHR.

The question is whether this progress will be undermined by the very advocates that are promoting PHRs. One of the key values of a PHR is the ability to communicate the personal health information among multiple providers caring for an individual when those providers are unable or unwilling to communicate it among themselves. This could be an extremely valuable function for both provider and patient. In fact, the potential automated communication of PHR information to Electronic Health Records (EHRs) is touted as a possible solution to our failure …