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

07/21/2014

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

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

Return to

National Alzheimer's Project Act Home Page

Advisory Council on Alzheimer's Research, Care, and Services Page

Advisory Council on Alzheimer's Research, Care, and Services Meetings Page

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