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.
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, say Elizabeth Pisani and her colleagues in an article in BMJ this month.
The researchers argue that simple accessibility of data is not enough to enable widespread public health gains. We need to invest in systems that make the information useful – including infrastructure, networks and scientific careers, including the data sciences, they report.
Benefits and costs of data sharing
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”, the researchers say. 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.
In the research, Pisani and colleagues examine the extent to which the fears about data sharing have been realised – and what is needed to get the most value out of shared data.
Pisani and colleagues also state that data sharing is often asserted to be good for health and to generate new information that can save lives – and that they “found many examples where this was demonstrably true”, with analyses of data pooled from different studies in different locations providing new information relevant to appropriate dosing, improved treatment of subgroups, and the development of new treatments.
Implications of failing to share data
“We also identified areas where the failure to share data has disrupted efforts to respond rapidly to outbreaks or foreclosed more detailed evaluation of interventions that may be harmful,” say the researchers in the journal article. “In these cases, not sharing data has been bad for science and almost certainly bad for health.”
They cite an example taken from the 2014 Ebola outbreak in west Africa: “Some researchers made genomic data immediately available for further study, confirming that the virus had spread from Guinea to Sierra Leone, that it was sustained by human-to-human transmission, and that it was mutating rapidly in certain areas.“
However, the researchers subsequently reported that, “What followed was three months of stasis, during which no new virus sequence information was made public [even though] thousands of samples were transferred to researchers' freezers across the world.” They called for greater data sharing through collaborative networks.
Simple accessibility of data is enough to promote research transparency, but public health gains require more complex models, conclude Pisani and colleagues. Effective data sharing requires long term investment in infrastructure, networks, and scientific careers, including the data sciences – and we need to share governance structures, scientific questions and ideas and interpretation.
You can read the full story here – BMJ: Beyond Open Data