Data sharing in Indigenous health research: guidelines needed
We need to share data to enable efficient and timely research
Data sharing maximises the value of collected data, minimises duplicative data collection, and promotes follow-up studies of secondary research questions using existing data.1 The importance of data sharing in advancing health is becoming increasingly recognised. The funders of health research around the world, including the National Health and Medical Research Council (NHMRC), have endorsed the call to increase the availability to the scientific community of public health research data from the research projects that they fund.2,3 Recently, cohort profiles and data source profiles have increasingly been published to facilitate data sharing.4,5 From the publications using the shared data, we have learned that data sharing increases the productivity of both original data collectors and subsequent data users.4
Why the urgent need?
Health data linkage, such as that done in Western Australia and the Northern Territory, has made it possible for researchers to use administrative data for Indigenous health research. However, there are no national guidelines for sharing de-identified data that are specifically collected from…