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REPORT FROM CONFIDENTIALITY, ETHICS, PRIVACY AND ACCESS

This report outlines key recommendations for ensuring consumer support in health information sharing, focusing on confidentiality, ethics, privacy, and access. It emphasizes strong security management, clear access restrictions, transparency, and ethical considerations beyond privacy concerns. The report also highlights the need for educating consumers and developing standards to protect health information effectively.

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REPORT FROM CONFIDENTIALITY, ETHICS, PRIVACY AND ACCESS

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  1. REPORT FROM CONFIDENTIALITY, ETHICS, PRIVACY AND ACCESS Group B

  2. KEY RECOMMENDATIONS • Assure consumer support through— • Consumer involvement in standards development through participation of consumer advocates at all levels (local, regional, national)

  3. KEY RECOMMENDATIONS • Assure consumer support through— • Strong security management • Clearly defined and enforced access restrictions, with authentication, non-repudiation and audit trails • Extending protection to telehealth and email communications • System transparency, with registration and disclosure of non-TPO users and uses • Effective enforcement

  4. KEY RECOMMENDATIONS • Assure consumer support by— • Educating consumers about the benefits of health information sharing for-- • Themselves directly • Public health • Research

  5. KEY RECOMMENDATIONS • Provide readily ascertainable and understandable privacy rules • Provide federal leadership in resolving preemption issues • Provide comprehensive, readily accessible educational resources and compliance materials, including model agreements for participants

  6. KEY RECOMMENDATIONS • Develop standards and tools to ensure accurate location and matching of patient health information • e.g., a privately-managed, patient-controlled, voluntary, unique individual health identifier

  7. KEY RECOMMENDATIONS • HHS should support or conduct research and development of privacy-enhancing technologies and mechanisms for incorporation into the NHII

  8. KEY RECOMMENDATIONS • Define the incidents of ownership and control in detail, and explain them accurately, e.g.: • When should an individual be able to withhold information from the record in whole or in part, and what are the implications for the provider? • When should an individual be able to restrict access by specific providers?

  9. KEY RECOMMENDATIONS • Recognize that there are significant ethical issues beyond privacy— • Managing genetic information • Appropriate use of IT tools • Relation between informed consent and privacy • Scope of consent for secondary use of data

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