More on the Markle framework: Patti Brennan's perspective
Posted July 16, 2008 by Lygeia Ricciardi

Patricia Flatley Brennan, RN, PhD, is the Director of Project Health Design. She made the following comments in response to the Markle Foundation's most recent release:

We at Project HealthDesign’s National Program Office are pleased to see the Markle Foundation’s recently released Common Framework for Networked Personal Health Information. This is the first formal statement in which the individual’s central role in managing their health care is clear.

Privacy is certainly among those issues at the forefront of thought by health professionals, policy makers and potentials users and we continue to view privacy as among those issues that must be addressed for personal health records to achieve their potential. Our demonstration projects are showing how varied the uses and users of PHRs are, and, as we understand more about how individuals want to manage their own health, we recognize how complex the privacy issue truly is.

The Markle guideline endorsements by both well-known health care stakeholders and relative newcomers go a long way toward moving the discussion from hand-wringing into a place where serious policy issues can be thoughtfully discussed and debated. We applaud the document’s call for portability, the specifications for which will be essential to wide acceptance of PHRs. Even if technology solutions to the issues may not exist today, we are happy to see this attention to the complicated issues of privacy because when we highlight any aspect of information processing, we bring attention to more than just that aspect.

Although this document is a useful framework for how an individual acquires and can trust information from records, it does not directly address one of the most important aspects of a personal health record -- personally gathered information. These observations of daily living form a key component of many of our grantee projects, and are an essential part of any true PHR. (See Health in Everyday Living e-primer). Thus, from the PHD perspective, the document is incomplete.

PHD intends to ask our ELSI team to comment on the Markle guidelines in depth, as a way to encourage discussion among the PHD audience. I’d also like to invite comments from our audience, including those involved in our grantee projects, to evaluate these guidelines in light of their personal research and experience.

Project HealthDesign exists to expand the knowledge about and vision of personal health records. Understanding how privacy can be protected but still allow for the sharing of information in ways that benefit patients and their caregivers will be a monumental step toward wide adoption of PHRs and, thus, toward better health for ourselves and our families.