Putting Data and Information into Hands of Those Who Can Use It: Dissemination and Impact of the California Health Interview Survey E. Richard Brown, PhD, David Grant, PhD, May H. Jawad, PhD, D. Imelda Padilla-Frausto, MPH UCLA Center for Health Policy Research Nancy Breen, PhD, National Cancer Institute Barry Portnoy, PhD, Office of Disease Prevention, National Institutes of Health AcademyHealth Annual Research Meeting June 7, 2008

2 Translating research into policy to improve health  Intended outcome  Promote development of “evidence-based health policy” to improve effectiveness of health policy  First step  Putting usable data, research analysis and information into hands of policy makers and advocates  Requires strategic approach to data and dissemination  Make research findings and data accessible to policy makers and advocates  Democratize access to analysis and application of data for policy makers and advocates with less technical capacity  This presentation  Conceptual framework  Dissemination intervention  Results of study assessing use and impact

3 Conceptual model: Opportunities to make empirical evidence relevant in policy process Problem Stream Policy Stream Political Stream  Data don’t change policy …but policy makers, advocates, and policy entrepreneurs can use data and research evidence to support policy change efforts  Data and evidence are relevant to:  Identifying, describing, & analyzing problem (Kingdon’s “problem stream”)  Developing or analyzing policy options (“policy stream”) John Kingdon, Agendas, Alternatives, and Public Policies Evidence- based Health Policy Our Goal

4 Audiences for policy-relevant data and research evidence  Policy makers in government agencies and legislatures  Policy entrepreneurs (or champions) in and out of government  Advocates trying to influence policy process and outcomes  News media/journalists

5 Audiences for policy-relevant data and research evidence  Researchers and government agencies often ignore substantive, resource and access constraints  Policy makers and their staff: Limited technical resources or time to access and analyze data  Advocates, especially for low-income populations: Limited technical resources needed to access and analyze data  Local health departments: Many have limited technical capacity for data analysis  Populations of color and smaller local jurisdictions: Many find little data available on their group or geographic area  Journalists working for print or broadcast media: Most have no expertise to conduct analyses and little time to search for data

6 UCLA Center for Health Policy Research’s strategy to democratize access to research data and analysis  The Center has developed strategy to democratize access to research data and analysis 1.Develop population-based data to provide information about diverse populations and geographic areas — with input from data stakeholders 2.Encourage policy-focused research and provide relevant data 3.Develop direct-to-policy-audiences channels of communication and dissemination that respond to each level of technical capacity 4.Provide free access to these data and easy-to-use analytic tools 5.Help advocates and local health departments enhance their capacity to effectively use data and research  These have proved effective in reaching policy audiences and impacting public policy

7  The Center also is home of California Health Interview Survey (CHIS)  California’s assessment tool designed to meet statewide and local needs for population-based health data on adults, adolescents, and children  Omnibus survey covers wide range of public health and health care topics plus extensive demographic and social information  Very large biennial RDD survey of California population  Sample sizes: 56,000 households in 2001, 42,000 in 2003, 45,000 in 2005, and over 50,000 in 2007  Statistically adequate samples for most counties  Survey conducted in 6 languages  Statistically adequate samples for key ethnic groups and Asian & Latino subgroups Develop population-based data to provide information about diverse populations and geographic areas

8 Develop population-based data… with input from data stakeholders  CHIS developed and conducted through extensive participatory process  Formal participatory approach to develop each 2-year cycle  Involves diverse constituency organizations and stakeholder agencies in formal advisory process  In planning CHIS surveys to enhance their relevance to communities surveyed and measure factors related to community needs  In using CHIS data and results and enhancing community knowledge and skills  Contrast to other large-scale health surveys, which include limited, if any, participatory approaches

9  Extensive dissemination to maximize use of CHIS data and results  Policy makers, advocates, media, analysts, and researchers  CHIS invests more than 1 in 5 project dollars in dissemination in every two-year cycle  Web marketing use by most audiences to access CHIS  Center policy research publications based on CHIS data targeted to key audiences  Easy-to-use web-based free query system to democratize access to data and analysis  Electronic data files — public-use, special-use, and confidential — for analysis by independent researchers  Workshops to disseminate knowledge about CHIS and encourage use Develop channels of communication and dissemination responsive to audiences’ technical and analytic capacity

10 CHIS Impact Study: Study goals  Developed study to understand how organizations and agencies access and use CHIS data and what impact CHIS data may have in their work  Found that diverse audience of CHIS users include:  State and national policy makers  Advocacy organizations  Philanthropic health foundations  Private hospitals and health care organizations  State and county public health agencies and federal agencies

11 CHIS Impact Study: Study approach  Two-stage design  Phase 1 — qualitative study — in collaboration with (and funding from) National Cancer Institute and National Institutes of Health: Completed  Phase 2 — quantitative study — in collaboration with (and funding from) The California Endowment: Will begin in June  Methods: Phase 1  Sample drawn from lists of CHIS data users (Center listserve, AskCHIS users, public-use data files users) and others known to Center staff  29 diverse organizations interviewed  State and local government legislative and agencies  Nonprofit organizations  Commercial organizations in health care  7 of these organizations selected for in-depth studies

12 Health policy analysis and development  California Governor Schwarzenegger’s office used CHIS data to support development of his proposal for health care reform  Used CHIS data to estimate number of people who would be affected by his proposal and develop a fiscal analysis of various policy options  Governor’s staff requested the Center to conduct multiple data analyses  California State Senate Health Committee used CHIS data to assess coverage effects of each proposal for expanding health coverage

13 Health policy advocacy  CHIS data used by virtually all stakeholders involved in California’s health care reform process  To analyze Governor’s health care reform proposal, develop amendments to his proposal or develop alternative proposals  Most organizations accessed CHIS data through several means  Including AskCHIS, public-use data files, and special requests to UCLA Center for Health Policy Research for data analysis  Created common data base to define the problem and to craft and assess policy proposals  California Food Policy Advocates collaborated with Center on research brief on food insecurity  Article in LA Times about study findings prompted Assemblyman to introduce bill to increase participation in food stamp program; bill passed  California Food Policy Advocates considered CHIS data and research study the centerpiece of their successful advocacy effort

14 Grant making  The California Endowment uses CHIS data in developing specific initiatives and programs within each program area  Program officers and associates use CHIS data in assessments of grant proposals and to supplement proposals with information relevant to program need within community or region of focus  The data are used during internal grant review processes to establish need, set context for programs and justify investment of foundation funds

15 Funding development  Los Angeles Regional Food Bank (LARFB)  Collects food and distributes it to sites throughout LA County  Obtains food resources through fundraising and resource acquisition as well as advocacy at the federal, state, and local levels  LARFB uses CHIS data to demonstrate need for additional resources  CHIS data are used with administrative data to demonstrate need for resources at local level and to advocate policy changes in food stamp, school breakfast and school lunch programs  CHIS data are also used to inform implementation of those programs  LARFB uses numerous sources of data in its planning, but CHIS is only source of local level data on population needs  LARFB benefits from CHIS providing data for county service planning areas and health districts with adequate sample sizes  LARFB considers CHIS credible, reliable source of information on hunger and food insecurity

16 Program and service planning  Many counties have used CHIS data to develop public-private partnerships to provide health insurance for uninsured children  CHIS data to estimate number of uninsured children in county who are not eligible for California’s Medicaid and SCHIP programs  CHIS data to develop budget for “Healthy Kids” programs and seek funding for them  CHIS data used to develop justifications for funding  The California Diabetes Program in California Dept. of Public Health  Uses CHIS data to measure county-level prevalence of diabetes and receipt of services essential to diabetes disease management (A1C tests, dilated eye and foot exams, and pneumococcal vaccine)  CHIS was only source of local health data relevant to this effort to demonstrate risk factors & burden related to diabetes at county level

17 CHIS Impact Study: Results summary  Multiple ways CHIS data were accessed  Most data users access CHIS data through AskCHIS online query system  Center reports and briefs, public-use files, confidential data files and requests for special data analyses by Center researchers also important  CHIS data were used by stakeholders for variety of purposes:  Health policy analysis and development  Health policy advocacy  Grant making  Funding development  Service and program planning

18  Key factors reported by stakeholders as important in their decisions to select CHIS data and ability to obtain and use it  Breadth of information makes CHIS useful for wide range of health issues  Availability of comparable CHIS data for both state and local-level data  CHIS sample supports analyses for many racial-ethnic and other population groups  CHIS data quality important to providing credible evidence for identifying and defining problems, and for planning and assessment  Data accessibility through multiple channels and methods critical to meeting the needs of extremely diverse data audience  Technical support, training and guidance to assist for data users CHIS Impact Study: Conclusions

19  Comprehensive topics and comparable state and local population- based health data provide useful data source for policy development, advocacy, and program planning  Substantial investment in dissemination and communication — specially providing free and highly accessible data and analysis — foster widespread use of CHIS data by many types of public agencies and private organizations Conclusions