Sharing Research Data to Improve Public Health: A Funder Perspective.
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ABSTRACT:
SUBMITTER: Carr D
PROVIDER: S-EPMC4547198 | biostudies-other | 2015 Jul
REPOSITORIES: biostudies-other
Publications
Sharing Research Data to Improve Public Health: A Funder Perspective.
Carr David D Littler Katherine K
Journal of empirical research on human research ethics : JERHRE 20150701 3
Through the Public Health Research Data Forum, global health research funders are working together to increase the availability of public health and epidemiology research data in ways that are equitable, ethical, and efficient. The Wellcome Trust funded the research reported in this special edition as a first step toward building an evidence base on the perspectives of research stakeholders in low- and middle-income countries on the benefits and challenges of sharing health research data. We hop ...[more]
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Project description:BackgroundThere is increasing recognition of the importance of sharing research data within the international scientific community, but also of the ethical and social challenges this presents, particularly in the context of structural inequities and varied capacity in international research. Public involvement is essential to building locally responsive research policies, including on data sharing, but little research has involved stakeholders from low-to-middle income countries.MethodsBetween January and June 2014, a qualitative study was conducted in Kenya involving sixty stakeholders with varying experiences of research in a deliberative process to explore views on benefits and challenges in research data sharing. In-depth interviews and extended small group discussions based on information sharing and facilitated debate were used to collect data. Data were analysed using Framework Analysis, and charting flow and dynamics in debates.FindingsThe findings highlight both the opportunities and challenges of communicating about this complex and relatively novel topic for many stakeholders. For more and less research-experienced stakeholders, ethical research data sharing is likely to rest on the development and implementation of appropriate trust-building processes, linked to local perceptions of benefits and challenges. The central nature of trust is underpinned by uncertainties around who might request what data, for what purpose and when. Key benefits perceived in this consultation were concerned with the promotion of public health through science, with legitimate beneficiaries defined differently by different groups. Important challenges were risks to the interests of study participants, communities and originating researchers through stigmatisation, loss of privacy, impacting autonomy and unfair competition, including through forms of intentional and unintentional 'misuse' of data. Risks were also seen for science.DiscussionGiven background structural inequities in much international research, building trust in this low-to-middle income setting includes ensuring that the interests of study participants, primary communities and originating researchers will be promoted as far as possible, as well as protected. Important ways of building trust in data sharing include involving the public in policy development and implementation, promoting scientific collaborations around data sharing and building close partnerships between researchers and government health authorities to provide checks and balances on data sharing, and promote near and long-term translational benefits.
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