NCVHS PHR Recommendations and PHD

Posted November 2, 2009 by Uba Backonja

On September 28^th, 2009, the National Committee on Vital and Health Statistics (NCVHS, http://www.ncvhs.hhs.gov/wrote a letter to Health and Human Services Secretary Kathleen Sebelius regarding the “protection of the privacy and security of individual health information in personal health records.”

In the letter, the committee discussed the synthesis of their recommendations on privacy and security of information in PHRs. This included hearings in May of 2009, held by the Confidentiality and Security Subcommittee of the NCVHS and included testimony from PHR vendors, consumer advocates, experts representatives of PHRs offered by health care providers and payers, and representatives from Medicare and Medicaid PHR projects.

From these hearings, four themes emerged:

1. the need for a standard set of fair information practices to govern consumer rights across all PHRs,
2. the need to maintain regulatory flexibility to foster development and innovation in the field of PHRs,
3. the importance of protecting consumers from unanticipated or inappropriate uses or disclosures of health information in their PHRs, and
4. the need to develop a consumer education strategy that will ensure appropriate understanding of the purposes, uses, and privacy and confidentiality limitations of PHRs.

These themes touch on major functions and goals of Project HealthDesign.

1. Project HealthDesign is inherently patient-centered—they are the focus of the project design and it is their perspective that this design is centered on. Patients have easy access to their PHR and decide what data to share, when, and with whom. Also, Round 2 grantees will receive technical core support and consultation on legal and regulatory aspects of capturing Observations of Daily Living (ODLs).
2. The major tenant of Project HealthDesign is to “stimulate innovation in personal health information technology.” Also, one of the project’s objectives is to expand “regulatory and policy considerations to facilitate the sharing of and protection of personal health information generated outside of care settings and its integration into clinical practice.” In Round 2, a major component is to provide guidance to teams within the context of national, state, and local regulations in terms of capturing ODLs and integrating them in to care processes.
3. Protecting consumer information is a major component of Project HealthDesign and one of the elements that composes the foundation of the common platform.
4. A core development stage in PHR development at Project HealthDesign is early engagement of patients in the design process. This promotes the possiblity of innovations that are developed to “fit” patient mental models and usefulness needs while minimizing training. In person educational efforts can then focus on complex, conceptual questions, such as understanding risk or making tradeoffs.

These points by NCVHS are an important turning point in the implementation of PHRs with the focus on the patient perspective. Project HealthDesign is glad to be in step with these points and looks forward to participating in the evolution of PHRs.