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Advisory Council July 2014 Meeting Presentation: Ethics Issues and Health Policy

Monday, July 21, 2014

Ethics Issues and Health Policy forAlzheimer's Disease

Tia Powell, MD
Director, Montefiore Einstein Center for Bioethics

Purpose of Ethics Sub-committee

  • Response to FACA member concerns
  • Identify ethics implications of both AD and proposed health policies
  • Prioritize topics by importance, impact
  • Indicate persons/institutions and mechanisms needed to address identified issues
    • Providers, government, industry?
    • Education, regulation, reimbursement?

Work to date

  • Members: Laurel Coleman, David Hoffman, Jennifer Manly
  • Ruth Katz, Rohini Khillan, Linda Elam, Tia Powell
  • Conference Calls
    • Identification of goals
    • Prioritizing topics
    • HIPAA and dementia

HIPAA educational project

  • Developed slide presentation
    • Define HIPAA: valve, not blockage
    • Assessment of decision-making capacity
    • Case based instruction
    • Specific guidance
  • Presented to HRSA-funded GEC centers May
  • Ongoing creation of audio tape for slides
  • Planned distribution broadly to GEC centers

HIPAA project additional steps

  • Supporting documents
    • Published literature
    • Possible HHS FAQ
  • Further Dissemination

Additional Topics

  • Caregiver Issues
  • Support patient autonomy while noting interdependence of patient and care-giver
    • Access to web-based patient information portals
    • Robust inclusion in care plan, implementation
    • Support for patient AND family, not VS

Research Issues

  • Surrogate consent for research
  • Consequences of research data in EMR
    • Benefit to patient care from data
    • Potential harm in lack of protected access to long-term care insurance, life insurance
  • Big Data:
    • Balancing privacy protections and benefit of harnessing power of data
    • Promoting International collaborations
    • Coordinating best practices, guidance

Severe Dementia and nutrition

  • Feeding Tubes in severe dementia
    • No benefit duration, quality of life
    • Increased pressure sores
    • Choosing Wisely recommendation
  • NAPA IOM Collaboration: Severe Dementia
  • Ongoing work, completed 2015

Future for Ethics Sub-committee

  • Additional Topics?
  • Completion of Health and Aging Policy Fellowship
  • Continued need for ethics input