Consumer Health Advocacy: A View from 16 States

1. Consumer Health Advocacy:A View from 16 States Community Catalyst Grantmakers In Health October 17th, 2006 -- Audioconference

2. Community Catalyst, Inc. 30 Winter Street, 10th Fl. Boston, MA 02108 617-338-6035 Fax: 617-451-5838 www.communitycatalyst.org Community Catalyst is a national nonprofit advocacy organization working to build a health justice movement. We are innovators who look for breakthrough opportunities to improve health care for all Americans. We develop new approaches to strengthen the voices of consumers and communities, organize vulnerable constituencies, and build the kinds of organizations and coalitions that can advocate effectively for health care reforms. Community Catalyst staff members are experts in health policy, organizational development, community organizing, law, communications, and strategic planning. They provide advice, information, and tools that help communities, consumer groups, providers, foundations and progressive policymakers work together to lead health system change. Electronic copies of this presentation are available by calling 617-275-2892. Organizations seeking to distribute or otherwise make widespread use of this publication are asked to notify Community Catalyst. (c) Community Catalyst 2006

3. A Benchmark Study • Comprehensive methodology • Baseline information about a diverse mix of states in: geography, population, politics, & levels of advocacy • Framework for analysis (c) Community Catalyst 2006

4. 16 Representative States ArkansasColoradoConnecticutFloridaGeorgiaIllinoisKansasLouisianaMarylandMassachusettsMichiganMississippiNew JerseyNew MexicoOhioOregon (c) Community Catalyst 2006

5. Background Questions • Can consumers actively participate in state health policymaking? • What political, economic and organizational factors make consumer advocacy effective in some states and extremely challenging in others? • What issues are affecting consumers and which ones are advocacy organizations addressing? • What impacts are advocacy efforts having? (c) Community Catalyst 2006

6. Study Objectives • Highlight key health policy issues health access for vulnerable populations • Analyze existing advocacy capacities • Identify opportunities for consumer groups achieve favorable policy outcomes • Recommend strategies to strengthen advocacy knowledge, skills and resources to achieve outcomes (c) Community Catalyst 2006

7. Key Findings • Serious and growing health access problems in all 16 states • Significant and increasing differences in health care access exist among states -- “have” and “have not” states – e.g., northeast/southeast • Consumer health advocacy makes a difference in all 16 states • Integrated and coordinated “systems of advocacy” are the most effective (c) Community Catalyst 2006

8. Issues Recurring Across All States • Medicaid and SCHIP – protection and expansion • Prescription drug access and affordability • Declining employer-sponsored coverage • Racial and ethnic health disparities in health status and outcomes • Tax and fiscal policies (c) Community Catalyst 2006

9. Issues In Many States • Immigrant access • Universal coverage including employer contributions • Private insurance market reforms • Community benefits and hospital free care – often with local focus and outcomes (c) Community Catalyst 2006

10. Capacities Needed for Effective Consumer Advocacy Systems • Legal and policy analysis • Grassroots organizing • Communications and media • Building and sustaining strategic alliances with other stakeholders such as hospitals, insurers, unions • Issue campaigns – common activities, partners, goals • Resources to support infrastructure and activities (c) Community Catalyst 2006

11. Legal and Policy Analysis • Craft solutions and analyze proposals from consumer perspective • Connect analysis to constituencies and communications strategy • Necessary for effective negotiations with policymakers and stakeholders (c) Community Catalyst 2006

12. Grassroots Organizing • Local community-based organizations and advocates including boards and front-line staff • Constituency groups – Family Voices, disabled, etc. • Faith-based organizations • Membership and other broad-based groups such as ACORN • Outreach, enrollment, and helplines as ways to identify and build grassroots leaders (c) Community Catalyst 2006

13. Broad-based Coalitions and Stakeholder Alliances • Consumer advocacy organizations bring unified voice to generally unorganized and underrepresented people • Other interests are well-financed and already have a strong policy presence • In a “dense interest group environment,” consumers can intervene and tip the balance • Consumers must consistently tend relationships outside of specific issue campaigns for effectiveness (c) Community Catalyst 2006

14. Key factors that inhibit or enhance advocacy effectiveness • The state’s political and economic environment • Income levels • Tax policies • Willingness to use public revenue for health access • Consumer access to decision-making • Electoral and government structures • Advocacy organizational capacity and leadership • Funding support for consumer advocacy (c) Community Catalyst 2006

15. Categories or Stages of Advocacy Impact: Study States • Defensive: Arkansas, Florida, Georgia, Louisiana, Mississippi • Transitional: Kansas, Michigan, New Mexico, Ohio, Oregon • Proactive: Colorado, Illinois, Maryland, Massachusetts, New Jersey (c) Community Catalyst 2006

16. Recommendations to Strengthen Consumer Voice • Strengthen and build systems of advocacy within each state • Create a national program to coordinate and deliver strategic support • Carry out coordinated issue campaigns • Increase and diversify resource base (c) Community Catalyst 2006

17. Recommendation: Building Systems of Advocacy • Systematic and realistic assessment • Support for collaboration – consumer advocacy organizations and stakeholders must do the work • New ways of operating – can be uncomfortable initially • Issue campaigns to build relations and capacities • Institutionalizing capacity (c) Community Catalyst 2006

18. Recommendation: National Coordination and Timely Support • Create a community of practice around common issues, capacity needs, and challenges • Deliver timely and tailored strategic support • Develop communications strategy • Evaluate • Promote connections in states through national organizations and stakeholder groups (c) Community Catalyst 2006

19. Recommendations: Coordinated Issue Campaigns • Medicaid and SCHIP important across all states • Multi-state issue campaigns with high potential for impact include: • tobacco taxes for access in southeast • “breakthrough” comprehensive efforts • Specific “just-in-time” supports include media; localized reports; model policies; evaluation (c) Community Catalyst 2006

20. Recommendation: Develop Resource Base • Target based on systematic assessment -- with short and long term goals • Strengthen collaboration – including partnerships between advocates and philanthropy • Build legitimacy and credibility for consumer advocacy role – document and disseminate • Diversify resource base • Plan and develop strategic support (c) Community Catalyst 2006

21. Next Steps • Share report findings at national, regional and state levels among diverse stakeholders • Actively seek feedback • Incorporate feedback into action plan • Work with funders and advocates to use framework in specific states and to develop issue strategy (c) Community Catalyst 2006

22. To request a printed copy of the report: • E-mail: msnyder@communitycatalyst.org • Call: 617-275-2931 (Mark Snyder) • www.communitycatalyst.org (c) Community Catalyst 2006