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
THE NATIONAL ACADEMIES PRESS
Washington, DC
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
Any opinions, findings, conclusions, or recommendations expressed in this publication 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 Summary. 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.
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 advising 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 understanding in matters of science, engineering, and medicine.
Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.
This page intentionally left blank.
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
COMMITTEE ON POPULATION
2015
KATHLEEN MULLAN HARRIS (Chair), Department of Sociology, University 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, Princeton 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
Preface and Acknowledgments
This report summarizes a workshop convened in Stellenbosch, South Africa, on March 29—30, 2015, which focused on the benefits of and 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 sponsored 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 sponsored 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
of Science of South Africa; Steven Kern, deputy director of quantitative sciences, Bill & Melinda Gates Foundation; and Robert Terry, senior strategic 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 presentations, 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 planning 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 acknowledged expert in the subject matter, followed by individual or panel presentations. 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 Committee on Population provided overall direction and guidance for the project, and Mary Ellen O’Connell and Thomas Plewes served as rapporteurs 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 accordance 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 standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.
The panel thanks the following individuals for their review of this report: David Carr, policy adviser, Wellcome Trust; Pierre Ongolo-Zogo, coordinator, Specialized Internship Program University of Yaoundé and
director, Centre for Development of Best Practices in Health, Yaoundé, Cameroon; and Osman Sankoh, executive director, INDEPTH network, Accra, Ghana.
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by William Eddy, Department of Statistics, Carnegie Mellon University. Appointed by the Academies, he was responsible for making certain that the independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of the report rests entirely with the author and the National Academies of Sciences, Engineering, and Medicine.
Thomas J. Plewes
Director
Committee on Population
This page intentionally left blank.
This page intentionally left blank.
