Health Literacy: A Consumer Advocacy Perspective

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. 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 CPP: Variety of Issues

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