Sharing Research Data to Improve Public Health: A Funder Perspective.

David Carr,Katherine Littler

doi:10.1177/1556264615593485

David Carr, Katherine Littler

Open Access

https://doi.org/10.1177/1556264615593485

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Abstract

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 hope this work will make a key contribution to discussions aimed at creating policy frameworks for data access at local, national, and regional levels that are sensitive to different contexts and ensure the benefits to research and health are realized in an equitable manner.

Highlights

As a charitable research foundation, the Wellcome Trust is strongly committed to ensuring that the outputs of the research we support—including research publications and data—can be accessed and used in a manner that delivers the greatest possible benefit to global health
For many areas of biomedical research that involve the collection of data from patients and populations, limits on data sharing are required to safeguard the privacy of research participants
Public health and epidemiology research has been highlighted as an area in which tremendous benefits could be gained from data sharing, but where the community has been relatively slow to embrace it and where key enabling infrastructures are not yet in place (Pisani & AbouZahr, 2010)

Summary

Introduction

As a charitable research foundation, the Wellcome Trust is strongly committed to ensuring that the outputs of the research we support—including research publications and data—can be accessed and used in a manner that delivers the greatest possible benefit to global health. While recognizing the need to address these concerns, we would argue that there is an “ethical imperative” to support data sharing to ensure that datasets collected at considerable expense using public and charitable research funds are used in a manner that achieves the greatest possible benefit to health and society.

Results

Conclusion