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Over recent years, health research funders around the world have introduced policies to support data sharing. There is an increasingly strong and clear consensus among funders that many research datasets are vast and largely untapped resources. Making these data available to other investigators allows published research claims to be verified, and provides opportunities data to be used in new and innovative ways that might never have been envisaged by the data generators – accelerating research and its application for health benefit.
Sharing data collected from human populations in the course of public health and epidemiology research raises a number of important ethical and governance issues. First and foremost, data sharing mechanisms must balance the need to facilitate access to data for legitimate users with the critical need to safeguard the privacy and confidentiality of research participants. Where such research is undertaken in low- and middle-income country (LMIC) settings, there may be important additional considerations regarding equity, benefit sharing and risks of harm to individuals and populations. However, while recognising these legitimate issues and concerns, we believe there is also a compelling ‘ethical imperative’ to ensure that datasets generated at considerable expense through public and charitable funding are used in ways that ensure the greatest possible benefit to global health.
The Public Health Research Data Forum brings together funders of global health research who are committed to increasing the availability of health research data in ways that are equitable, ethical and efficient and will accelerate improvements in public health. Since its establishment in 2011, the Forum has served to enable cross-funder discussion and coordination on efforts to promote data sharing, and supported several major pieces of work to investigate the associated technical, cultural and ethical issues. This has included commissioned reports exploring the issues around data discoverability, data linkage and data citation.
The Forum actively seeks to widen discussion and debate within the research community and other key stakeholder groups around the issues raised by data sharing. In March 2015, we held a workshop in Stellenbosch, South Africa at which researchers from across Africa discussed the opportunities and challenges for sharing health research data in an African context. The discussion highlighted the crucial importance of building in-country capacity and skills in data management; the need to build trusted governance frameworks; and the importance of planning and resourcing data sharing as an integral part of the research lifecycle.
The Forum has also recognised the need to begin to build a robust, empirical evidence base on the views and perspectives of LMIC research stakeholders on data sharing. The results of a major multi-centre study led by the Ethox team at Oxford, and funded by the Wellcome Trust on behalf of the Forum, were published in a special edition of the Journal of Empirical Research on Human Research Ethics last month – providing vital insights into some of the key elements needed to create ethical frameworks for data sharing. The new online resource on ethical best practices for data sharing on the Global Health Network site was a key output of this project. We would urge you to contribute your expertise and views to the site, and help us to develop the resource a definitive platform for knowledge sharing, learning and discussion on the ethical issues raised by data sharing.
The findings of this work will play a major role in shaping priorities for the next phase of the Forum’s work. Our focus will centre on working with our research communities - providing practical guidance, training and resources to aid in the creation of data sharing platforms and to support the implementation of funder policies in ways that respect contextual differences and ensure the benefits of data sharing are realised at a local and global level.
David Carr, Wellcome Trust