1. 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

2. 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

3. 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

4. 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.

5. 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?

6. 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

7. 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

8. 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

9. 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.

10. 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