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HIT Standards Committee

HIT Standards Committee. Privacy and Security Workgroup: Standards for Consumer Engagement Dixie Baker, SAIC Steve Findlay, Consumers Union April 28, 2009. Privacy and Security Workgroup Members. Dixie Baker, SAIC Anne Castro, BlueCross BlueShield of South Carolina

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HIT Standards Committee

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  1. HIT Standards Committee Privacy and Security Workgroup: Standards for Consumer Engagement Dixie Baker, SAIC Steve Findlay, Consumers Union April 28, 2009

  2. Privacy and Security Workgroup Members Dixie Baker, SAIC Anne Castro, BlueCross BlueShield of South Carolina Aneesh Chopra, Federal Chief Technology Officer Ed Larsen, HITSP David McCallie, Cerner Corporation John Moehrke, HITSP Steve Findlay, Consumers Union Gina Perez, Delaware Health Information Network Wes Rishel, Gartner Walter Suarez, Kaiser Permanente Sharon Terry, Genetic Alliance

  3. Current Status Initiated series of educational sessions on current standardization activities related to consent management Organization for the Advancement of Structured Information Standards (OASIS) / International Security Trust and Privacy Alliance (ISTPA) Privacy Management Reference Model (PMRM) Framework for resolving privacy policy requirements into operational services and functions Integrating the Healthcare Enterprise (IHE) Basic Patient Privacy Consents (BPPC) Profile for capturing patient acknowledgement of consent as Health Level 7 (HL7) Clinical Document Architecture (CDA) document Coming Up – May 14, 10:00am-12:00pm ET: HL7 Version 3 Domain Analysis Model: Medical Records; Composite Privacy Consent Directive – Ioana Singureanu

  4. Meaningful Use Health Outcomes Policy Priority #2: Engage Patients and Families

  5. Needs for Consumer Engagement Standards “Electronic copy” of health information Machine readable Human readable Exchangeable with personal health records (PHRs) “Clinical summary” “Real-time” PHR Secure patient-provider messaging – authenticated, private, integrity protected, attributable, audited Patient permissions and preferences Incorporation of consumer data into electronic health record (EHR) Home devices Consumer reported Decision-support Safety Privacy Care-experience reporting Usability

  6. Consumer Engagement Observations The big and relevant question: should government guidelines and regulations “nudge” in these areas. (2008 book Nudge: Improving Decisions About Health, Wealth and Happiness by WH adviser Cass Sunstein and Richard Thaler) Nudging is the art of guiding consumer behavior by manipulating the ecosystem of choice and decision-making HIT tools absolutely offer a nudge opportunity in health care – perhaps revolutionary! The “meaningful use” nudge may be transformational How HIT tools are designed will promote certain choices and behaviors Decisions about where and how to specify standards will exert a significant impact

  7. Example #1: Home Care Will be used increasingly for seniors and those with chronic conditions “Many birds with one stone” – consumer preference, less provider-intensive, safer than hospital/nursing home, lower cost HIT tools will be key enabler What is the role of the HITSC in recommending standards, implementation specifications, and certification criteria for home care devices? exchanges between providers and home care devices? exchanges between devices?

  8. Example 2: Consumer Permissions Authorization to use information in clinical research Informed consent to participate in clinical trial Consent to send health information to consulting specialist Authorization to disclose psychotherapy notes Consent to send health information to payer Consent to share information across HIE/NHIN Authorization for HIE to use health information Consent to exchange secure email Permission to query home medical devices? Permission to “friend”? Permission to use health information to direct self-management tools? Authorization for provider to send health information to PHR vendor Permission for PHR vendor to query home device?

  9. Consumer Engagement Questions HIT Policy Committee may tackle these kind of issues. What’s the HIT Standard Committee’s role? Should we be advising ONC (and other feds agencies) to promulgate guidelines and/or standards for PHRs, mobile technology platforms and apps, home monitoring devices, connectivity with providers, “actionable” decision support, social networking that involves personal information and data, etc? What is proper scope and role of such guidelines and standards? We are just raising the question today for initial discussion

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