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Sharing Research Data to Improve Public Health in Africa: a Workshop Summary

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Sharing Research Data to Improve Public Health in Africa: a Workshop Summary Sharing Research Data to Improve Public Health in Africa: A Workshop Summary Sharing Research Data to Improve Public Health in Africa A Workshop Summary Mary Ellen O’Connell and Thomas J. Plewes, Rapporteurs Committee on Population Division of Behavioral and Social Sciences and Education Copyright © National Academy of Sciences. All rights reserved. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 Any opinions, findings, conclusions, or recommendations expressed in this pub­ lication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. This activity was supported by the National Institute on Aging of the National Institutes of Health through Contract No. 10001706, Order No. HHSN26300056. International Standard Book Number-13: 978-0-309-37809-3 International Standard Book Number-10: 0-309-37809-5 Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, N.W., Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; Internet, http://www.nap.edu/. Copyright 2015 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. (2015). Sharing Research Data to Improve Public Health in Africa: A Workshop Sum­ mary. M.E. O’Connell and T.J. Plewes, Rapporteurs. Committee on Population, Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press. Copyright © National Academy of Sciences. All rights reserved. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Ralph J. Cicerone is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advis­ ing the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public under­ standing in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org. Copyright © National Academy of Sciences. All rights reserved. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary Copyright © National Academy of Sciences. All rights reserved. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary STEERING COMMITTEE FOR A WORKSHOP ON STRENGTHENING SCIENCE TO INFORM PUBLIC HEALTH POLICY: OVERCOMING BARRIERS TO SHARING RESEARCH DATA IN SUB-SAHARAN AFRICA DAVID CARR (Chair), Wellcome Trust MUHAMMAD ALI DHANSAY, South Africa’s Nutritional Intervention Research Unit, Medical Research Council ROSEANNE DIAB, Academy of Science of South Africa STEVEN E. KERN, Bill & Melinda Gates Foundation ROBERT TERRY, World Health Organization THOMAS J. PLEWES, Study Director MARY ELLEN O’CONNELL, Rapporteur MARY GHITELMAN, Program Assistant v Copyright © National Academy of Sciences. All rights reserved. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary COMMITTEE ON POPULATION 2015 KATHLEEN MULLAN HARRIS (Chair), Department of Sociology, Uni­ versity of North Carolina at Chapel Hill JERE R. BEHRMAN, Department of Economics, University of Pennsylvania VICKI A. FREEDMAN, Institute for Social Research, University of Michigan MARK D. HAYWARD, Population Research Center, University of Texas at Austin HILLARD S. KAPLAN, Department of Anthropology, University of New Mexico SARA S. MCLANAHAN, Center for Research on Child Wellbeing, Princ­ eton University EMILIO A. PARRADO, University of Pennsylvania DAVID R. WEIR, Survey Research Center, Institute for Social Research, University of Michigan JOHN R. WILMOTH, Population Division/DESA, United Nations THOMAS J. PLEWES, Director TINA M. LATIMER, Program Coordinator vi Copyright © National Academy of Sciences. All rights reserved. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary Preface and Acknowledgments his report summarizes a workshop convened in Stellenbosch, South Africa, on March 29–30, 2015, which focused on the benefits of Tand barriers to sharing research data in order to improve public health. The workshop was sponsored by the Wellcome Trust and the Bill & Melinda Gates Foundation. This workshop summary report was spon­ sored by the National Institute on Aging (NIA) of the National Institutes of Health and is a product of the Committee on Population of the National Academies of Sciences, Engineering, and Medicine (the Academies). The purposes of the workshop were to raise the profile of issues around the sharing of public health data in Africa, enable the Wellcome Trust and its international partners to highlight findings of previous spon­ sored research on this topic, identify issues that mitigate against public health data sharing and pathways through research and policy venues to foster increased sharing, and, in general, serve as a way to bring more African voices and perspectives into the dialogue. It was conducted in cooperation with several sponsoring organizations and representatives of national science academies in Africa, as well as experts in using and generating public health data to discuss the benefits of and barriers to sharing research data within the African context. The workshop was organized by a committee of experts representing several of the sponsoring organizations. The committee was chaired by David Carr, policy adviser, Wellcome Trust, and included Muhammad Ali Dhansay, director, South Africa’s Nutritional Intervention Research Unit, Medical Research Council; Roseanne Diab, executive director, Academy vii Copyright © National Academy of Sciences. All rights reserved. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary viii PREFACE AND ACKNOWLEDGMENTS of Science of South Africa; Steven Kern, deputy director of quantitative sciences, Bill & Melinda Gates Foundation; and Robert Terry, senior stra­ tegic and project manager, World Health Organization. Georgeanne E. Patmios of NIA and Kobus Herbst of INDEPTH were also members of the committee that organized the conference. The committee provided guidance in developing the workshop agenda, secured expert presenta­ tions, and facilitated the conduct of the workshops. The meeting was hosted by the Academy of Science of South Africa and the South African Medical Research Council, whose representatives also served as members of the organizing committee. Although the steering committee members played a central role in planning and conducting the workshop, they did not actively participate in writing this summary. The committee benefited from the active participation of the late Richard Suzman, NIA, in the plan­ ning phase and from the support of Georgeanne E. Patmios of NIA in the workshop itself. The presentations during the workshops provided the basis for lively and informative discussions. As summarized in this report, each of the five sessions was introduced in a keynote presentation by an acknowl­ edged expert in the subject matter, followed by individual or panel pre­ sentations. The contributions of the session chairs, keynote speakers, and presenters—identified in the agenda that appears as Appendix A to this report—are gratefully acknowledged. The steering committee acknowledges the work of the staff of the Academies in organizing the workshops and this summary. The Com­ mittee on Population provided overall direction and guidance for the project, and Mary Ellen O’Connell and Thomas Plewes served as rap­ porteurs for this report. Mary Ghitelman provided exceptional assistance with administrative and logistical arrangements, and in the production of this summary report. Paula Whitacre ably edited the report, and Kirsten Sampson Snyder and Eugenia Grohman orchestrated the review and editing processes. This workshop summary was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accor­ dance with procedures approved by the Report Review Committee of the Academies. The purpose of this independent review is to provide candid and critical comments that assist the institution in making its report as sound as possible, and to ensure that the report meets institutional stan­ dards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft
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