Many organisations and journals advocate the sharing of individual patient-level clinical data to facilitate additional analyses and increase transparency around clinical trials. Are the current strategies for facilitating data sharing both effective and ethical? Merson et al., examine this question in a recent article published in the New England Journal of Medicine.
The authors argue that the benefits of data sharing may be undermined by inadequate platforms. They discuss the risk of creating “data dumpsters”, where authors deposit data without providing the appropriate documentation necessary for meaningful interpretation. The authors recommend that systems are put in place to standardise and curate data to maximise data re-use. However, they acknowledge that there is a lack of investment and expertise in this area. The authors also express concerns that high resource countries, who may be better equipped to make use of data, will disproportionately benefit from data sharing compared to those with more limited resources.
The authors use the WorldWide Antimalarial Resistance Network (WWARN) of 260 collaborators in 70 countries as an example of how data sharing can be done effectively and fairly. WWARN use pooled harmonised participant-level clinical trial data to answer specific research questions. The network encourages those who generate data to become involved in meta-analyses and ensures that their contributions to any subsequent publications are recognised in accordance with established guidelines on authorship.
The principles and practices behind WWARN have been expanded by the Infectious Disease Data Observatory who aim to apply the model to other neglected tropical diseases. Pooling data from the small number of studies investigating these diseases can maximise the utility of any data generated. This will ultimately benefit lower-income countries, where the knowledge generated by these studies is needed most.