Health Literacy: A Consumer Advocacy Perspective

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Health Literacy A Consumer Advocacy Perspective
Meg Gaines, J.D., L.L.M. Director, Center for
Patient Partnerships Associate Clinical Professor
of Law University of Wisconsin Law School
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The Center for Patient Partnerships a snapshot

• Brainstorming began in 1999, formal planning in
  2000, doors open in 2001.
• Education, advocacy research.
• 300 patient cases the raw material.
• Broadly cross disciplinary law, medicine,
  nursing, pharmacy, social work, industrial
  engineering, public policy etc.
• Courses, field work, patient cases, research

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CPP Variety of Issues

• Listen, listen, listen
• Help organize thinking and prepare for md
  appointment
• Information and option seeking for or with
  pt/family members
• Help make decisions
• Researching whos doing what where?
• Clinical trials
• Access/coverage denial

• Insurance/billing issues
• Strategize better pt/md relationships
• HC Consumer 101
• Clarify (and emphasize importance of) patients
  goals and values
• Employment issues
• Benefits and entitlements
• ID new sources of hope
• Explore fears

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Health Literacy

• IOM Report describes the frustration of even the
  most resourceful and educated consumers have in
  getting good quality, comprehensible information
  about their diagnoses.
• The result is unsatisfied consumers and providers
  and stressed relationships.
• Rich resource for learning 3 points to focus on
  briefly.

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Health Literacy and Panic The Problem

• Who can think when the house is ablaze?
• We must develop skills/systems to
• Help patients cope with shock of dx
• Help providers develop their own strategies for
  healthy living while working with patients in
  crisis (to avoid burn out, numbness, impatience,
  insensitivity to others etc.)
• For instance?

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Health Literacy and Panic Solutions?

• Mindfulness and self-reflection as a part of
  education, training, life.
• Support peer communication structures embedded
  in delivery systems.
• Cultural/psychological education about death and
  dying fears, facts and faith traditions.
• Many of the same needs for pts and providers

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Patients and treatment decision making The
problem

• Research says patients want information but less
  sure about involvement in tx decisions.
• This is rational if you think you dont have (and
  cannot get) adequate information.
• Lack of consumer confidence.
• Generational
• Educational (level and type)
• Cultural (medical culture too!)
• Provider ambivalence in involving patients it
  saves time to just make the decision myself. (or,
  does it)
• Lack of provider skills/training in consumer
  counseling

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Patients and treatment decision making Solutions?

• Accessible, effective materials especially
  non-written, interactive
• Systems to support patients in crisis and
  providers who care for them
• Informed decision makers need confidence to
  become co-producers systemic coaching function
• Training for providers in collaborative decision
  making, counseling, effective communication
  strategies

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Health Literacy Skills Training and More Time

• Communication skills training and additional time
  with consumers are important
• Effective measures and usable data are valuable
• Communication skills can be improved
• BUT, on a very basic level, its about values
  individual and system.
• And/but the invaluable lesson of the 35mm
  camera.

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The Center for Patient Partnerships University of
Wisconsin Law School 975 Bascom Mall Madison, WI
53706 Mgaines_at_wisc.edu www.law.wisc.edu/patientadv
ocacy A multidisciplinary center of the schools
of Law, Medicine and Nursing
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