Recommendations to address information gaps on Asian American health: Results from project AXIS (Asian American Exchange and Information Source)

Background: In partnership with the National Library of Medicine (NLM), and the Asian and Pacific Islander American Health Forum (APIAHF), the NYU Center for the Study of Asian American Health (CSAAH) completed a mixed methods needs assessment to better understand the informational needs of gatekeepers serving Asian American (AA) communities.  Findings informed recommendations to address information gaps and to identify opportunities to warehouse, and disseminate health information for AAs. 

Methods: The project was led by an advisory committee of 7 leaders in AA health.  Advisory committee members guided survey and focus group guide development, participant recruitment, and reviewed and informed data analysis and the creation of recommendations.  Three on-line focus groups were conducted with gatekeepers across the U.S., including health care providers, community-based organizations/social service providers, researchers and other community gatekeepers (N=23).  A national on-line survey was also completed by healthcare consumers and gatekeepers (N=256).  

Results:  Survey findings indicated that the majority of healthcare consumers surveyed identified accessing reliable health information disaggregated by sub-group as a top challenge.  While many had heard about NLM’s Medline and PubMed, few knew about the Asian American Web portal or the Refugee Health Information Network (RHIN).  Key focus group themes included the challenge of finding disaggregated and local data, as well as finding  written patient-level information on specific health topics that was correctly translated and culturally relevant.     

Conclusions/Discussion: Key recommendations included the need to: 1) Build partnerships with trusted AA organizations, universities, and foundations to facilitate information dissemination; 2) Coordinate and assemble linguistically and culturally relevant, local, state, and national disaggregated data and health information into one central location; 3) Focus on missing information, such as emerging and smaller AA populations, including Bhutanese, Hmong, Burmese, and Nepalese; and 4) Create a user-friendly, interactive, multi-media website targeting AA gatekeepers to warehouse the information.