Making the case for data disaggregation on race and ethnicity to advance a culture of health

In recognition of the critical importance of obtaining and utilising high quality data to understand and eliminate racial and ethnic health disparities in the United States of America, the Robert Wood Johnson Foundation (RWJF) funded a research project to explore the practice of racial and ethnic data disaggregation to advance a culture of health ( Improving the quality and granularity of data may assist in providing appropriate services, develop culturally tailored programmes, producing sound policies and achieving equity. The project was initiated in 2016 focusing principally on the American situation but was later expanded to cover the situation in seven other countries as well, including Malaysia.

The Malaysian study was led by Dr Shyamala Nagaraj from the University of Michigan and Assoc Prof Dr Ng Chiu Wan from the Faculty of Medicine, University of Malaya and was aimed at understanding how and why heterogeneity or granularity in ethnicity classifications has developed in terms of the social, historical and political context in Malaysia and the use of disaggregated data in health policy. The research found that health data by ethnicity captured by public agencies, in particular, the Ministry of Health Malaysia, are often quite granular ( However, past efforts to reduce health disparities have not been ethnic-based but rather focused on improving the health of rural communities. With urbanisation, there is now a policy shift towards the health needs of urban communities. Nevertheless, ethnicity in the Malaysian context is a social construct. This may have a bearing on the way different ethnic groups live their lives and thus affect the distributions of disease

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