Sharing Research Data to Improve Public Health

April 13, 2015

By David Carr, Wellcome Trust

Over recent years, there has been a growing consensus that many of the increasingly rich and complex datasets being generated from health research represent a vast untapped resource. Making data more readily available to researchers and other users enables the data to be used in new and innovative ways, helping to maximise the benefits to health, and improving the efficiency of the research enterprise.

Research funders (including the Wellcome Trust) have responded by introducing policies requiring that data generated by their funded research are made available for access and re-use with as few restrictions as possible. However putting this into practice is far from straightforward, and particular challenges exist in relation to public health and epidemiology research data collected by researchers in low- and middle-income country (LMIC) settings. There are very real fears that the value of data to both the researchers that collect it, and to the populations in the countries concerned, will be threatened if is made rapidly available to better-resourced groups elsewhere in the world.

In 2011, more than 20 global health research funders came together to establish the Public Health Research Data Forum – committing to work together to increase the availability of public health and epidemiology research data in ways that are equitable, ethical and efficient, and that will accelerate improvements in public health.

Last week’s workshop in Stellenbosch was a major landmark in the Forum’s work: bringing together around 65 health researchers and other stakeholders from across Africa, with selected international experts, to take stock of the work undertaken by the Forum and to help shape its future direction.

From the outset of the workshop, there was clear consensus around the benefits that could be derived from sharing data, and a strong willingness from all participants to engage in and explore ways in which sharing could be enhanced.

In the course of the meeting, speakers from several major collaborative initiatives and networks – including the INDEPTH and ALPHA networks, H3 Africa and WWARN (the Worldwide Antimalarial Research Network) – described how effective platforms for data sharing had been established which were benefiting researchers across Africa and beyond. It was clear, however, that there was a good deal more nervousness when it came to making data available outside of established collaborations. Here, there was felt to be a critical need to establish fair conditions of use, and mechanisms to ensure that the contribution of those generating the data was properly recognised.

Three further key messages emerged strongly from the workshop. The first was the critical importance of activities to develop capacity and skills in data management, curation and analysis in LMICs and the need to consider how capacity building can be resourced through research funding, and in the context of data sharing agreements.

Secondly, the importance of building and maintaining trust and confidence among all stakeholder groups concerned – including researchers, institutions, ethical review boards and research participants – as a basis for effective data sharing cannot be overstated.

Delegates discussed emerging findings from a major research study funded by the Wellcome Trust on behalf of the Forum, which has explored the views and expectations of key research stakeholders across five LMICs – an area which hitherto has been lacking an evidence base. The study will be published in July, together with an online toolkit to help support future engagement activities in different settings.

Thirdly, there was very strong agreement that data sharing needed to be considered as an integral part of the research cycle, and incentive structures developed to help ensure this occurs. The costs and benefits of sharing data, and the resources and skills required, must be factored in from the earliest planning and design stages of research, not just added in as an afterthought.

Catherine Kyobutungi of the African Population and Health Research Centre likened this need for a holistic perspective to ‘finding the hippo’: identifying the creature as whole, rather than just the part above the waterline – an analogy which captured the imagination of the group and became the catchphrase for the workshop!

In the final session, delegates discussed a new Forum report, published to coincide with the workshop, which explores the benefits and challenges of data linkage in public health research in both high-income and LMIC settings. There was strong support for the report’s key findings, which include the need to shift the tone of the policy discourse on data sharing from “default closed” to “default open”, and the need to create resources and case studies to aid researchers making the case to link data.

The rich discussions at the workshop will play a vital role in shaping the next phase of the Forum’s work, as we look at how we can best work together and with the research community to support data sharing in a manner that is sensitive to different contexts. The Wellcome Trust will continue to play a leading role in this work.

The meeting was also successful in bringing new voices from Africa into this discussion: building upon, and further expanding, this engagement and dialogue will be a key priority for the Forum. A report of the workshop will be developed by the US National Academy of Sciences over the coming weeks. We hope that this will be used by workshop delegates (and others) to spark further discussion and debate across Africa and globally.