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H H S Department of Health and Human Services
U.S. Department of Health and Human Services
Health Information Technology and Quality

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What are some Federal PHR Initiatives?

AHIC Consumer Empowerment Workgroup

The U.S. Department of Health & Human Services' (HHS) American Health Information Community (AHIC) formed the Consumer Empowerment Work Group (CEWG) in order to explore the issues surrounding the secure use of health information technologies. The CEWG was tasked with the immediate goal of developing a plan to make pre-populated electronic registrations and medication histories available to target populations within one year. In addition to this goal, the CEWG had the broader task of facilitating the widespread adoption of PHRs that were portable, easy-to-use, affordable, and consumer-centered. To this end, the CEWG made 32 recommendations in the areas of privacy and security, interoperability and portability, the development of incentives for PHR adoption, and education and outreach. It is the CEWG's intention that these recommendations guide the development of PHR technology and inform policy discussions.

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AHRQ/CMS Initiative

AHIC CEWG has tasked the Centers for Medicare & Medicaid Services (CMS) with piloting programs to measure the value of PHRs for Medicare patients and their physicians.  To meet the goals of the CEWG, CMS contracted with the Agency for Healthcare Research and Quality (AHRQ). AHRQ is in the course of conducting separate projects to evaluate the utility of pilot PHR tools for Managed Care and Medicare fee-for-service (FFS) beneficiaries. The initiatives also seek to discover what support may be necessary in order to help elderly and disabled populations use PHRs. The results of the AHRQ studies will be used to inform Medicare decisions.

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National Committee for Vital and Health Statistics (NCVHS)

On the basis of six hearings held on the topic of PHR systems, NCVHS composed a letter report consisting of twenty policy recommendations which covered a range of issues related to PHR development and adoption.  Produced with the goal of informing policy decisions, the recommendations addressed PHR practices and standards, privacy and security, research and evaluation, interoperability and the role of federal agencies in promoting PHR systems. The report also highlighted the state of the PHR as an ill-defined and evolving concept and identified the key potential benefits of PHRs and PHR systems. NCVHS later released another report specifically covering privacy policy practices. This report focused on recommendations for developing consumer trust in PHRs and advocated that consumers should have the right to control their electronic personal health information.

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HHS Family Health History Tool

The Department of Health and Human Services (HHS) released a free online program, My Family Health Portrait, which allows individuals to easily gather and organize their family health history. This information is stored only on the user's computer, eliminating confidentiality concerns, and can be shared with physicians and relatives. The program is based on the Continuity of Care Document (CCD) standard. It is also available in an open-source format which provides other organizations with the option of downloading and customizing it for their own use. The tool is intended to improve patient well-being by enabling patients to create personalized disease-prevention plans, informing physician decision-making and contributing to the earlier detection of conditions such as diabetes and cancer.
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