Health Literacy: A Consumer Advocacy Perspective

Meg Gaines, J.D., L.L.M.Director, Center for Patient PartnershipsAssociate Clinical Professor of LawUniversity of Wisconsin Law School

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

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 “who’s doing

what where?” Clinical trials Access/coverage denial

Insurance/billing issues Strategize better pt/md

relationships “HC Consumer 101” Clarify (and emphasize

importance of) patient’s goals and values

Employment issues Benefits and entitlements ID new sources of hope Explore fears

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.

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?

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

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 don’t 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

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

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, it’s about values –

individual and system. And/but: the invaluable lesson of the 35mm

camera.

The Center for Patient Partnerships

University of Wisconsin Law School

975 Bascom Mall

Madison, WI 53706

Mgaines@wisc.edu

www.law.wisc.edu/patientadvocacy

A multidisciplinary center of the schools of Law, Medicine and Nursing