Leveraging Trusted Networks to Educate Multicultural Communities about Bones, Joints, Muscles, Skin, and Pain

Background:  Many autoimmune, rheumatic, musculoskeletal and skin diseases disproportionately affect racial and ethnic populations, leading to higher disease prevalence and greater morbidity compared with Caucasians. Moreover, disparities exist in access to health information among underserved minority populations. To address these disparities, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), part of the National Institutes of Health, launched the National Multicultural Outreach Initiative targeting African Americans; Hispanics/Latinos; Asian Americans and Pacific Islanders; and American Indians, Alaska Natives, and Native Hawaiians.

Program background:  In 2010-2011 NIAMS conducted audience research with low SES adults from four multicultural communities who have autoimmune, rheumatic, musculoskeletal and skin diseases for input on the psychosocial and behavioral aspects of living with chronic disease and feedback on effective health communication modes. Participants deemed a health planner offering 12 months of resources the most effective educational tool. In 2012, NIAMS conducted a pilot study to gather feedback on two planner versions and analyze organizations’ distribution methods. Based on the formative research and pilot study, NIAMS created four tailored patient-centric, culturally relevant health planners and an electronic toolkit of outreach resources for national distribution in 2013 and 2014. NIAMS utilized traditional and social media, exhibits, direct mail, and engagement with national and local organizations to promote and distribute the planners. Focus groups following the 2013 distribution effort offered insight into effective outreach approaches and planner enhancements. Five advisory groups of multicultural experts provided strategic guidance at an initial stakeholders meeting, gave input throughout the planner development, and were instrumental in distributing planners to multicultural networks.

Evaluation Methods and Results:  NIAMS conducted a comparative analysis between the 2013 and 2014 distribution efforts to determine effective outreach approaches, rates of planner ordering and distribution, utilization of digital resources, and levels of stakeholder engagement. Improvements in outreach and promotion methodology and utilization of resources resulted in a 133% increase in website visits, a 741% increase in online planner downloads, and a 47% increase in online electronic toolkit downloads. Qualitative data indicated planner recipients appreciated receiving culturally targeted information. Expanded partnerships with government, community, patient and professional organizations led to successful penetration into underserved multicultural communities.

Conclusions:  Intermediaries and end-users reacted positively to the health planners as informative, culturally appropriate, patient-centric educational tools. Using a community-engagement approach to develop and distribute the planners, NIAMS improved awareness of and access to culturally relevant health information on bones, joints, muscles, skin and pain for underserved multicultural populations. The availability of the planners and electronic toolkit as free public resources supported community, patient and professional organizations, and government in multicultural outreach.

Implications for research and/or practice:  Through this initiative, NIAMS is helping to improve the awareness of and access to culturally relevant health information for underserved racial and ethnic populations, and supporting and involving organizations in multicultural outreach. Leveraging existing networks creates a broader reach when disseminating health information and strengthens partnerships for future outreach efforts.