Consumer Empowerment Workgroup
Recommendations
Consumer Empowerment Workgroup
Co-Chairs:
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Nancy Davenport-Ennis, National Patient Advocate Foundation
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Rose Marie Robertson, American Heart Association
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Members:
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Jason Bonander, Centers for Disease Control and Prevention
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Susan Christensen, Agency for Healthcare Research and Quality
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Jodi Daniel, DHHS/Office of the National Coordinator for Health IT
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Lorraine Doo, Centers for Medicare and Medicaid Services
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Kevin Hutchinson, SureScripts
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Kim Nazi, Department of Veterans Affairs
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David Lansky, Markle Foundation
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JP Little, RxHub
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Ross Martin, Pfizer
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Susan McAndrew, DHHS/Office for Civil Rights
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Davette Murray, Department of Defense
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Nancy Nielsen, American Medical Association
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Jayne Orthwein, National Institute of Standards and Technology
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Charles Safran, American Medical Informatics Association
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Scott Serota, Blue Cross Blue Shield Association
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Steve Shihadeh, Microsoft
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Linda Springer, Office of Personnel Management
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Paul Tang, Palo Alto Medical Foundation
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Robert Tennant, Medical Group Management Association
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Myrl Weinberg, National Health Council
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Office of the National Coordinator:
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Kelly Cronin
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Make recommendations to the Community to gain widespread adoption of a personal health record (PHR) that is easy to use, portable, longitudinal, affordable, and consumer-centered.
Broad Charge: What are we trying to accomplish?
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Ideally, personal health data can be exchanged among PHRs and sources of personal health information (e.g., electronic medical records, payer or pharmacy systems) under the control of the patient while preserving the meaning of the data.
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Privacy protection and security safeguards are paramount, and timely access for all consumers to their personal health information should be ensured.
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Appropriate incentives to encourage consumer and provider adoption of PHRs should be identified and promoted.
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Research on effective messaging for consumers and providers should guide broad educational efforts to engage them.
Broad charge issues to be addressed
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Recommendation 1.1: HHS should promote consumer access to their personal health information in the trial implementations of the NHIN.
1. Interoperability and Portability
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Recommendation 2.1: The AHIC Confidentiality, Privacy and Security Workgroup, in collaboration with the Consumer Empowerment Workgroup, should develop principles and identify best practices for privacy policies for consumers’ PHR data that are interoperable, (i.e., protections that follow the consumer as his or her data moves or is shared). These recommendations should apply to all individuals and entities, including both covered and non-covered entities under HIPAA.
2. Privacy and Security
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Recommendation 2.2: The HHS Office for Civil Rights should provide guidance to clarify the protections provided under HIPAA regarding the rights of consumers and their proxies to timely access to their electronic personal health information requested from covered entities.
2. Privacy and Security
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Recommendation 2.3: CMS, in collaboration with the HHS Office for Civil Rights and other interested agencies, should develop policies and guidelines for HIPAA-covered entities and business associates for authorization of data release to and from PHRs, including the development of HIPAA-compliant standardized authorization language, no later than December 28, 2007.
2. Privacy and Security
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Recommendation 2.4: The State Alliance for e-Health should consider exploring issues relative to State privacy laws and PHRs and share their findings with the Community and HHS. The Consumer Empowerment Workgroup intends to provide the State Alliance for e-Health with background information and a detailed explanation for this request.
2. Privacy and Security
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Recommendation 3.1: HHS, through AHRQ, and in collaboration with the Indian Health Service, CMS, the Department of Veterans Affairs, and the Office of Personnel Management, should develop an evaluation framework that can assist in the systematic assessment of PHR offerings to federal employees and beneficiaries, by December 28, 2007. Evaluation criteria may include the effect of PHR services on health outcomes, level of consumer engagement in their health care, economic impact, data security, and other measures.
3. Incentives for Adoption
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Recommendation 3.2: In 2007, HHS, through AHRQ when appropriate, should conduct evaluations that will provide useful information needed to develop the evaluation framework for assessing PHRs specified in 3.1. Specific study topics include the impact of data sharing through health information exchange, the comparative value of various data sources, and the impact of various architectural models.
3. Incentives for Adoption
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Recommendation 3.2.1: HHS should assess how the sharing of personal health information with consumers through the use of PHRs impacts health care quality and patient satisfaction, including the results of private sector efforts as available.
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3. Incentives for Adoption
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Recommendation 3.2.2: HHS, through AHRQ, should conduct a study to assess the comparative value of and challenges related to using data on diagnoses and medication derived from claims, administrative, clinical, laboratory, pharmacy, and consumer-based sources to populate and maintain PHRs, including evaluations of the current availability of each source of data and of consumer and clinician reactions to and decisions based on the use of these data. Because of the low rate of EHR adoption by providers, the study should begin with an examination of experiences with currently available PHRs based on claims and administrative data as well as consumer-based sources, then move to clinical and other data over time, with interim results reported back to the Community by December 28, 2007, and final results reported back by June 30, 2008.
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3. Incentives for Adoption
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Recommendation 3.2.3: HHS, through AHRQ, should fund evaluations of the impact on health care quality and patient satisfaction of various architectural models of PHRs (e.g., stand-alone, integrated, networked) and delivery methods (e.g., web-based, compact disc, flash drive) to consumers.
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3. Incentives for Adoption
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Recommendation 3.3: The Department of Veterans Affairs should conduct an evaluation of the benefits of their My HealtheVet PHR in the 2007 calendar year, and report back to the Community about the status and results to date no later than December 28, 2007. Based on the evaluation, the Department of Veterans Affairs should communicate the value of their PHR to veterans and stakeholders to encourage adoption.
3. Incentives for Adoption
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Recommendation 3.4: HHS, through the Centers for Medicare & Medicaid Services and the Indian Health Service, should develop plans to offer portable PHRs with privacy protections to their beneficiaries, and report back to the Community about their plans as available. The plans should take into account the results of the studies and best practices from 2.1 and 3.2, as they become available.
3. Incentives for Adoption
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Recommendation 3.5: In 2007, the Consumer Empowerment Workgroup should identify a range of incentives intended to increase adoption of PHRs, and report on their findings to the Community. These incentives may include financial benefits accruing to providers or other PHR offerors, financial benefits accruing to patients and consumers, or other forms of economic benefit of established effectiveness (e.g., employee productivity, customer loyalty). The Consumer Empowerment Workgroup should include in its report any available evidence documenting the effectiveness of each type of incentive and how that incentive might best be deployed to encourage PHR adoption.
3. Incentives for Adoption
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Recommendation 4.1: In 2007, the Consumer Empowerment Workgroup should continue to study public and private sector activities to increase consumer awareness of PHRs, including the convening of an expert panel on consumer engagement and social marketing, and report on their findings to the Community.