Workshop on how to expand research data sharing

Unlocking potential benefits for research and health across Africa

TDR news item
23 April 2015

‘Data is power’ was the sentiment of the opening address by Susan Veldsman, from the Academy of Science of South Africa at a recent workshop on research data sharing held in Stellenbosch, South Africa. The consensus among the more than 65 African and international experts was that Africa can benefit if equitable terms and funding can be established.

Catherine Kyobutungi from the African Population and Health Research Centre likened the untapped potential of research data to a hippo. ‘At the moment we can only see and access a very small amount – like the ears of a hippo in water – but we know there is a huge potential lying just below the surface.‘

While African researchers can generate large quantities of quality health data, their capacity to analyse those data quickly is often low. Coupled with new demands from funders and journals to publish data more openly, there is concern that the data will be mined by researchers from the North with little benefit to those that participate in the research from the South.

This workshop set out to explore these issues and identify potential solutions. Negotiating fairness and benefit sharing between researchers from all locations and with the study participants at the beginning in a collaborative agreement was a key topic. The Council for Health Research and Development presented one model to assist researchers ‘where there is no lawyer’ achieve this fair research contracting. The concept of embargoing or delaying the release of data to allow time for analysis was also raised.

Ethical issues

Achieving consent at the beginning of any study for later data sharing is one of the challenges. Perceptions of study participants from a number of studies in Africa and Asian countries was presented by Susan Bull from the University of Oxford. She highlighted the importance of understanding context and achieving an appropriate level of consent in relation to the subsequent reuse of the date. Robert Terry, Knowledge Manager for TDR said, “Getting proper consent is a good start but putting in place good governance mechanisms, such as a committee to decide on responsible access and reuse, is just as important in order to maintain trust.”

Building data management capacity

Formal training and less formal on-the-job experience and mentoring in data management was recommended by Professor Basia Zaba from the London School of Hygiene and Tropical Medicine. Professor Zaba is head of the ALPHA network of African Longitudinal Population-based HIV studies linking 10 study sites in 6 high prevalence countries of Eastern and Southern Africa.

Funding

Data management and curation are often extra activities that don't attract funds in their own right. It was generally agreed that data sharing needs to be considered in the context of the whole research cycle and good sharing starts with that end in mind. Research funding needs to be restructured to try and build in support for data management and sharing as part of the total funding budget. “As the majority of data in public health is generated with support from public funding, it is a public good and needs to be made widely available,” said Professor Steve Tollman from the University of Witwatersrand. The role of research funders was seen as key in both shaping the agenda and creating a supportive environment for researchers to share their data.

Recognition and incentives

Incentives are needed to recognize the efforts of researchers that share their data, requiring new standards in identifying data sets and being able to cite that data. Caroline Wilkinson from Ubiquity Press explained the efforts they are taking to enable date to be cited and record the impact of data as it is reused. A new report commissioned by the Wellcome Trust on behalf of the Data Forum was released at the meeting. The report titled, Enabling Data Linkage to Maximise the Value of Public Health Research Data, is freely available from the Trust’s website.

The workshop was held under the umbrella of the Public Health Research Data Forum, a consortium of health research funding bodies that includes TDR, in order to explore the challenges of sharing data with a focus on research in Africa. It was sponsored by Academy of Science South Africa, the Bill and Melinda Gates Foundation, INDEPTH, the United States National Institutes of Health (NIH) National Institutes of Aging, Wellcome Trust, South Africa Medical Research Council, the United States National Research Council of the National Academies, and TDR.

A report produced by the NIH Institute of Aging will be published in the summer of 2015.


For more information, contact Robert Terry (terryr@who.int).

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