PROGRAMS TO ADDRESS DISPARITIES DATA COLLECTION, ANALYSIS, AND DISSEMINATION

PROGRAMS TO ADDRESS DISPARITIES DATA COLLECTION, ANALYSIS, AND DISSEMINATION A review of progress toward key recommendations from Healthy Kansans 2010 February 16th, 2007

Programs to Address Disparities in Kansas • Review the HK2010 recommendations to address Disparities (data collection, analysis, and dissemination) in Kansas • Review Kansas performance on the HK2010 Disparities Indicators • Review the progress and impact of policy initiatives related to Disparities (data collection, analysis, and dissemination) in Kansas • Review the barriers/challenges to adopting Disparities (data collection, analysis, and dissemination) policy in Kansas • Review the opportunities for new Disparities (data collection, analysis, and dissemination) policy initiatives in Kansas

I.Promote routine data collection and reporting of at least race, ethnicity, primary language, place of birth, disability status, and income level on all data gathered among Kansas residents. • Data Definitions: Develop an operational definition for each standard data element to be adopted by the state-level data governing entity(s) and used on data gathered among Kansas residents. • Potential Resource: Use Minnesota Department of Human Services, “Guidelines for Culturally Competent Organizations” as a guideline for data elements to collect (see document on HK2010 website at http://www.healthykansans2010.com/hk2010/Cultural%20Competency% 0Action%20Coalition/References/MN%20cultural%20competency.pdf , pages 28 and 29). Minnesota document is based on CLAS and WICHE cultural competency standards. Simplify and clarify exact data elements for Kansas. Recommended data elements from the Minnesota document are as follows:

Limited-English proficiency • Literacy in any language • Immigration status • Disability • Household income • Education level • Health insurance status • Gender • Age • Race/ethnicity/tribe • Nation of origin • Correct address (so information can be geo-coded) • Sexual orientation (at option of client) • Length of time in U.S. (as rough indicator or acculturation) • Preferred spoken and written language (including dialects and American Sign language)

Data Collection: Ensure collection of data for all state programs (not limited to health programs only) use, at a minimum, OMB 15 race/ethnicity standards. • Note: Data collection based on OMB 15 standards is required for federal funding. • Legislative action is not required, but statewide policy could promote broader implementation. • Provide information to organizations on legality of collecting OMB 15 race/ethnicity data. • Identify funding/incentives to promote collection of data using OMB 15 race/ethnicity standards. • Research best practices in other states with statewide or near-statewide implementation across all state agencies (Alaska, Hawaii) • Improve collection and reporting of accurate Hispanic/Latino ethnicity data (e.g., decrease proportion of unknown/no repose for hospital discharge and cancer registry data)

Ensure 5 (races) + 1 (Hispanic) ethnicity, at a minimum, are collected, but encourage communities, organizations, and programs to collect more detailed race and ethnicity information as needed. • Data Collection: Encourage comprehensive disparities data collection (beyond OMB 15 race/ethnicity standards). Two schools of thought: • 1. Approach 1: Develop priority framework and timeline (e.g., OMB15 by 2006, primary language by 2010, etc.) This approach was favored by most action group members who attended meeting 2. The group favored race/ethnicity and primary language as top priority data items. • 2. Approach 2: Develop data menu with standardized operational definitions. Allow communities, organizations, and programs to choose and implement first those data elements that best fit their population, using the standard data definitions. This approach was favored by some who were not able to participate in Meeting 2 but who submitted comments later. • 3. All agree: Develop complete set of standardize operational definitions first.

Data Reporting: Ensure all data collected are reported and available to the public, including communities, advocacy groups, not-for-profit organizations, researchers, etc. • Add Hispanic ethnicity to reporting tools (e.g., KIC, Kansas Cancer Registry reports) • Move beyond “Black”, “White” and “Other” as racial reporting categories (e.g., KIC, Kansas Cancer Registry reports) • Engage communities – particularly under-represented groups – better and more comprehensively as data resources and consumers. • Ensure data collectors and repositories have resources allocated not only for collecting data, but also for making data and analyses available to data consumers. • Increase priority of collecting accurate, comparative data on underrepresented groups.

Encourage increased use and consumption of data at local level to (1) increase quality of data collected and (2) improve use of data for decision-making and local policy formation. • Implement a de-centralized approach to engaging communities • Promote state-local partnerships • Dovetail with Kansas Collaborative Initiative (collaborative involving League of Municipalities, Kansas Association of Counties, etc.) check name of collaborative • Provide training to communities to (1) improve data capacity and (2) help build trust. Seek outside funding for training • Engage local resources/organizations with data capacity, such as community hospitals, to help provide data technical assistance, training, and leadership at the local level. • Provide technical assistance and training at the local level (such as the data training provided through minority health disparities project).

Implement broader social marketing campaign. Engage communities in owning data, seeing importance of data, and becoming partners in the process • Increase awareness and support among disparate populations of data collection efforts in their community. • Work with communities to ensure standard state forms are filled out consistently, completely, and accurately. Example: race, ethnicity, ancestry, language, and prenatal smoking on new birth certificate form. • Create system to monitor multiple health outcomes over the lifespan of Kansans. Overweight and obesity are given as an example here, but this could be expanded to include oral health, tobacco use, etc. • Add height and weight to immunization registry. • Institutionalize collection of height and weight at school entry and at certain points during school career.

Maintain collection of height and weight in Youth Tobacco Survey, beginning in 9th grade, and collection of height and weight in BRFSS for adults. • Add demographic measures, as needed, to all overweight/obesity measurement tools to allow for reporting by underrepresented groups. • Cross-cutting strategies: • Build on information gathered and lessons learned in minority health disparities project, specifically, identify data inventory, gaps, and opportunities for improved data services by the state’s data resources, particularly related to disparities and underrepresented groups. • Promote use of technology to address data gaps and needs and opportunities to exchange data.

Kansas Performance on Healthy People 2010 Disparities Indicators

Kansas Performance on Healthy People 2010 Indicators • Kansas Center for Health Disparities • (Formerly known as the Kansas Office of Minority Health) • Engaged in State Infrastructure Building Project funded by the National Office of Minority Health and KDHE • Data collection, monitoring, and management are a key priority in the strategic plan for the program area of Health Promotion and Wellness • Currently developing an implementation plan to conduct a centralized, comprehensive study of identified health disparities impacting racial/ethnic populations from archival data sources to address HK2010 Indicators. • To clearly identify gaps and establish baseline data to address HK2010 Indicators, KCHD has utilized the comprehensive report by the Kansas Health Institute entitled “Racial and Ethnic Minority Health Disparities in Kansas: A Data and Chartbook” released in April 2005. • The report clearly documents the lack of available data regarding disease specific health disparities for racial/ethnic and special needs populations.

Programmatic Efforts to Address Disparities in Kansas • KDHE established the Kansas Center for Health Disparities in Fall 2005 • KCHD is charged with a leadership role in the mobilization of available health resources, programs, and healthcare initiatives to address health disparities and access to quality care for African-Americans, Hispanics, Native Americans, and Asian/Pacific Islanders, Immigrants, Migrants, and residents with Limited English Proficiency in the State of Kansas. • The primary impact of the program is building cultural and linguistic competence by advocating for and coordinating access to primary and preventive healthcare services that will promote and improve the health and wellness of racial/ethnic and special populations statewide. • Emphasis on eliminating health disparities and establishing a culturally competent public health network is focused on building the infrastructure and operational capacity of the program.

Programmatic Efforts to Address Disparities in Kansas • B. Identified Gaps in Programs • Limited availability and delivery of culturally and linguistically competent health care services • Disproportionate number of racial/ethnic faculty and students in health related programs in institutions of higher learning • Low number of racial/ethnic licensed health care professionals (i.e. nurses, physicians) who deliver primary healthcare services and/or interventions to populations impacted by health disparities • Need for public education and awareness regarding disease specific health disparities within the target population and healthcare providers to promote understanding and changes for the future • Comprehensive assessment of racial/ethnic and special needs populations of health preferences, beliefs, norms, cultural, religious, social, environmental factors to assist with development of culturally competent health interventions

Programmatic Efforts to Address Disparities in Kansas • C. Opportunities for new Programs • Media and visibility campaign that includes professional and community level presentations to promote awareness regarding health disparities and current needs • Funding through National Office of Minority Health to partially fund and facilitate five community health initiatives during FY2007 in identified health disparity areas (including Wichita, Garden City, and Kansas City) for disease-specific health disparities (i.e. Diabetes, Cancer, Immunizations, HIV/AIDS, Maternal Child Health, Cardiovascular Disease, Mental Health) impacting racial/ethnic populations • Developing community partnerships for health promotion and wellness for disease-specific health disparities within target populations at health fairs and educational events with national, state, local, public, and private entities • Organizational assessment of internal and external partners to identify strengths and weaknesses to build successful program collaborations and data collection standards

Programmatic Efforts to Address Disparities in Kansas • C. Opportunities for new Programs • Community Access Project that includes focus groups and health information and preferences survey within target populations in health disparity areas to assist with completing population assessments, developing culturally and linguistically competent health programs/interventions, and providing technical assistance to healthcare providers. • Annual Health Disparities Conference is utilized to encourage public health professionals to effectively address health disparities of racial/ethnic populations during public health priority setting, decision-making, and program development. The conference provides a centralized, educational forum on health disparities to increase the level of knowledge of public health professionals.

Barriers to Implementing Effective Programs to Address Disparities in Kansas • Barriers to program implementation • Limited funding sources for long-term programming • Current funding source provides “start-up grant” to build program infrastructure and operations • Health policy changes to support program implementation to assure access to and equitable healthcare for racial/ethnic and special needs populations • Data shortfalls for disease-specific health disparities impacting racial/ethnic populations • Uniformity among all valid data sources of collecting of race/ethnicity according to OMB 15 standards to ensure accuracy of reported health disparities

Barriers to Implementing Effective Programs to Address Disparities in Kansas • B. Suggestions for overcoming barriers • Increase funding to support long-term programs from national, state, and local sources by defining statewide needs through addressing data gaps to properly describe the level of impact of health disparities. • Ensure public health advocacy for health equity for racial/ethnic and special needs populations in the State of Kansas by raising awareness and educating state leadership. • Continue to advocate for changes in health policy, practices and programs by raising awareness within state, local, and community partnerships as well as federal and state government entities. • Improve public health planning and policy by actively participating in health initiatives with state, local, tribal, and community-based entities to address health disparities and to facilitate change.

PROGRAMS TO ADDRESS DISPARITIES DATA COLLECTION, ANALYSIS, AND DISSEMINATION