“No Data, No Problem!” — Data, Research and Policy Advocacy to Reduce Health Disparities E. Richard Brown, Ph.D. Director, UCLA Center for Health Policy Research Professor, UCLA School of Public Health AcademyHealth Annual Meeting June 7, 2004

2 Health disparities addressed through change in professional practice and public policy  Personal experiences are core knowledge of health disparities — but they are “just anecdotes”  Research has confirmed those personal experiences and helped make health disparities a social issue  Reducing health disparities requires translating research evidence into change:  In professional practice and  In public policies  I will focus on using research and data to change public policy

3 Research and data do not change policy — advocacy and leadership do  Policy change results from strategic advocacy and political leadership  Researchers help by providing credible analysis and data that advocates and policy leaders use  Data and analysis are essential  To making good policy (evidence-based policy) and  To moving issue through policy process  As researcher  Can align with advocates and policy leaders, or  Can remain independent of them  Effectiveness requires retaining intellectual independence and scientific credibility

4  Agenda Setting  First step is to get issue on policy agenda  Getting policy-makers and leaders to pay serious attention to issue  Help make case and make it credible  “No Data, No Problem!”  Data and research help make health problems visible to public and policy makers  Absence of data keeps issue invisible or seen as “unworthy” of public policy Data and research in policy process

5  You can frame your research to help answer important policy and political questions  How big a health problem is it? — how many people it affects  How severe a problem is it? — its health effects, social consequences, and economic costs  Who is most affected ? — characteristics of groups at greater risk  What causes or contributes to problem? — factors that contribute to problem or increase risk  Individual characteristics?  Individual behavior or actions?  Institutions or systems or policies?  Frame issue to emphasize important policy perspectives and values Data and research in policy process

6  Specifying policy alternatives  Provide evidence about relative effectiveness of different policy options  Research, data and publications that  Discuss explicit policy implications  Show extent that policy options address problem  Show extent that they are feasible

7  Adoption of policy  Provide evidence that policy makers and advocates use to argue for one policy versus another  Research and data play minor role  Is policy good technically?  Politics and argument dominate  Is policy good politically? Data and research in policy process

8  Implementation of policy  Focus attention and provide evidence on whether policy is being adequately implemented  Research and data that include  Process measures  Outcome measures Data and research in policy process

9 Summary  Identify stage of policy process 1. Agenda setting 2. Specifying policy alternatives 3. Adoption of policy 4. Implementation of policy  Make implications explicit  Discuss policy implications related to data or findings  Identify how specific public policies (or absence) affects outcomes  Make policy recommendations clear and specific  Target research publications directly to policy makers and advocates as well as to journals

10 California Health Interview Survey: Data to Address Social Disparities in Health and Health Care  California Health Interview Survey (CHIS) — Designed to meet state and local needs for population-based health data  Very large biennial survey of California population  Estimates for many health and social indicators and health care access  Data used:  To understand and measure health needs and disparities among California’s diverse population — diverse in ethnicity, social class, and geography  To support decision making at local level and statewide  For public health & health care policy analysis, development and advocacy  For planning public health & health care services and programs

11 CHIS invests substantial resources in dissemination to reach many constituencies  Extensive dissemination through multiple channels to maximize use of CHIS data and results by wide range of constituencies  Designed to meet needs of policy makers, advocates, media, analysts, and researchers  Publications with analytic results  Designed to reach variety of constituencies, disseminated by mail, electronically, and through conferences  Electronic data estimates — Ask CHIS  Easy-to-use online data query system  Democratizes access to both data and analysis  Electronic data files for analysis by other researchers and analysts  Workshops and community briefings

12 CHIS publications targeted to constituencies and widely disseminated  UCLA Center for Health Policy Research has published many CHIS- based publications that reach different types of constituencies  Policy research reports ~ for policy wonks, specialized policy makers, and focused policy advocates  Policy briefs ~ for those interested in issue but not deeply involved  Fact sheets ~ to interest people in issue, even those not focused on it  Journal articles ~ for researchers and policy analysts  Other groups use CHIS data in their own publications  Effective systems to disseminate publications directly to broad policy audience and to larger public  Web site dissemination  Printed copies mailed to key leaders

13 Ask CHIS is easy-to-use quick way for all types of users to get analyses from CHIS  CHIS provides access to statewide and local data through fast, user-friendly Web-based data query system — Ask CHIS  Enables non-technical users to obtain easily- tailored customized data results  Ask CHIS democratizes access to data and analysis Screenshot of AskCHIS results

14 CHIS is used to change public health policy  “Community Action to Fight Asthma” uses CHIS data to support policy and education efforts of local grantees to address environmental triggers of asthma symptoms among school-aged children  Asthma symptom rates are highest among populations of color  Fresno County public health officer used CHIS data to identify obesity, diabetes and asthma as most important public health issues in that county and obtained additional resources to address them  Conditions have high rates among Latinos, African Americans, and poor  Public health leaders, faith-based community health program, and food banks in 2 Central Valley counties relied on CHIS data in organizing “Hunger Summit” and in obtaining new USDA funding for food security project  Hunger highest for Latinos, immigrants, and the poor

15 CHIS is used to change health care policy  Many counties use CHIS data to justify need for, and to develop, new public-private health insurance expansion programs for children not eligible for private or public coverage  Uninsured rates are highest among Latinos  Community clinic associations in several counties use CHIS data to support requests for additional HRSA and other funding to improve primary care and expand access  Access barriers highest among Latinos and immigrants  AHRQ relied on CHIS 2001 data to provide estimates for Asian ethnic groups and Latinos (Hispanics) in its Congressionally mandated National Healthcare Disparities Report

16