Beyond open data: realising the health benefits of sharing data
Accessible data are not enough. We need to invest in systems that make the information useful, say Elizabeth Pisani and colleagues
As little as a decade ago, many researchers working in global health recoiled at the idea that they should openly share individual patient data with one another. Now, data sharing is being herded into the mainstream by pioneering researchers, with added pressure from funders, medicine regulatory authorities, public health agencies, and medical journals.1 2 3 4 5 6 But even those researchers most willing to share data are given little guidance on how that should happen, and the practice is still unusual, especially in low and middle income countries.
Concerns continue to be raised that data sharing will lead to data being analysed by rich institutions in industrialised countries while researchers in poorer countries with the highest burdens of infectious disease will lose control of their data and get little in return. Some fear that data sharing might harm patients and communities by breaching confidentiality, that the infrastructure is not up to it, and there is nowhere safe to put shared data.7
Our group includes researchers working for academic and humanitarian organisations, as well as public, charitable, and industry funders of data sharing efforts. Although we have raised concerns in the past,8 9 10 11 12 13 we are now involved in sharing information collected in low and middle income settings, including demographic surveillance data and the records of individual patients in clinical trials. We examine the extent to which the fears about data sharing have been realised in our work and what is needed to get the most value out of shared data.