An article by Kiley et al. in the New England Journal of Medicine presents the specific vision of research funders (Wellcome Trust, Medical Research Council, Cancer Research UK, and Bill and Melinda Gates Foundation) for optimizing the value of data produced in studies, especially clinical trials, that they funded. As the need in medical research is always greater than the resources, the authors emphasize on the importance of “collaboration and cooperation among members of the global research community to maximize the effect of funded research”. However, to support this vision, funders of research have to actively incentivize and support data sharing.
There is currently a consensus that clinical trials results should be shared in a timely manner, with consideration of participants’ privacy and confidentiality; this is supported by a joint statement of the World Health Organization. The authors, as funders, identified three main challenges to data sharing: resources, equity and incentives.
As data sharing is not a cost-free process, funders need to support technical solutions to help researchers to access and (re)use data. Additionally, funders are increasingly asking researchers to include data management plans in their research proposals and the costs of these plans in the funding budget. To tackle concerns on inequity of data sharing for low- or middle-income countries, the authors suggest inclusion in data-access governance specific terms that “require users to contribute to training and capacity development or to share the resulting outcomes”.
The main challenge to data sharing remains that many researchers believe sharing can be disadvantageous for them. As such, funders must demonstrate the value of data sharing as well as other outputs (e.g. material or software) by taking them into account in the grant review process. Additionally, to understand the significance of a study in its field, the scientific content of an article should be re-valued compared to its publication metrics. The idea is somehow to redefine criteria used for the grant application process but also maybe to ask applicants to demonstrate how they support the values of open research. Finally, the authors support the idea of “data authorship” where researchers would be cited when their data are (re)used.
These lines of thought are essential to ensure the use of research data to their fullest potential and even more so in the case of rare disease where data are more scattered.
For details, please read the full article.