More on the Markle framework: Patti Brennan's perspective
Posted July 19, 2008 by Lygeia Ricciardi
Oops. We goofed earlier this week and posted a draft version of comments on Connecting for Health’s Common Framework for Networked Personal Information. Here is the revised post:
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. The document addresses the technical and conceptual challenges related to exchange of personally identified health data among health care institutions, and between health care institutions and lay people. We are particularly pleased to see this document validating the role of individuals as key participants in health information exchange.
The Markle guideline endorsements by well-known health care stakeholders and the relative newcomers – Google and Microsoft – go a long way toward moving the discussion about data interoperability from hand-wringing about data security into a place where serious policy issues can be thoughtfully discussed and debated. We applaud the document’s call for data portability, and the guidance offered to facilitate technical solutions to the challenges of data portability. As new technology solutions emerge, the guidance provided in this document is likely to insure that concomitant advances are made in the development of technological strategies to implement privacy policies.
Privacy is certainly among those top-of-mind issues for health professionals, policy makers and potential users, and we continue to view privacy as a key issue that must be addressed for personal health records to achieve their potential. Our grantees’ projects are showing how varied the uses and users of PHRs are, and how the wide range of data might be that is relevant to a person wanting to understand his or her health state and communicate salient observations to their clinicians. There are actually three general types of data: data originating from my clinic, like laboratory tests and physician-ordered medications; data directed by my clinician but collected by me, like daily weights or insulin levels; and data defined by me and collected by me, like personal assessments of mood or stamina. Three different types of data challenges those concerned with creating privacy policies to consider not only privacy relevant to sharing of what is traditionally-thought-of as clinical data but also the privacy considerations related to personally-defined, even idiosyncratic, observations deemed valuable to the individual.
The Common Framework for Networked Personal Information provides a useful framework for how both institutions and individuals acquire and can trust information from records. It’s a good starting point to think in even greater depth about the policy implications of a world in which consumers not only access but generate their own data, which in many cases may be quite different from data that have traditionally been used by clinicians. 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 the Health in Everyday Living e-primer.) From the PHD perspective, building on the work Markle has done, more needs to be done to address the full range of information deemed necessary to help a person better understand and engage in healthy behaviors and health care.
Project HealthDesign invites our audience, including those involved in our grantee projects, to comment on these guidelines in light of their personal research and experience.
Project HealthDesign exists to expand the knowledge about and vision of personal health records. It will be critical to expand our understanding of how privacy strategies need to be modified or extended to afford for secure handling and management of personally meaningful, if not medically generated, data. This knowledge is necessary for the sharing of information in ways that benefit patients and their caregivers, and it will be a monumental step toward wide adoption of PHRs and, thus, toward better health for ourselves and our families.