Sharing Research Data to Improve Public Health in Africa: A Workshop Summary (2015)

Chapter: Appendix A Workshop Agenda

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Suggested Citation: "Appendix A Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2015. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21801.
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Appendix A

Workshop Agenda

SHARING RESEARCH DATA TO IMPROVE PUBLIC HEALTH

SUNDAY, MARCH 29, 2015

Session 1: Introductory Session

Chair: David Carr, Wellcome Trust
 
3:30 p.m. Registration and Coffee
 
4:15 p.m. Welcome from Sponsors and Hosts
 
4:30 p.m. Meeting Context and Objectives
David Carr and Katherine Littler, Wellcome Trust
5:15 p.m. Keynote Presentation: Benefits and Challenges of Data Sharing in the African Context

Kobus Herbst, Africa Centre for Health and Population Studies
 
6:00 p.m. Plenary Discussion: Priority Issues and Challenges
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Suggested Citation: "Appendix A Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2015. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21801.
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MONDAY, MARCH 30, 2015

Session 2: Establishing Equitable Terms for Data Sharing

Chair: Robert Terry, WHO-TDR

  • – How can we ensure that the researchers who collect and share data receive due recognition and reward for their efforts?
  • – How can we build capacity and ways of working to enable datasets to be used to their fullest potential to address health care and societal challenges across Africa?
  • – How should international collaborations and partnerships be structured to ensure equitable sharing of benefits?
 
9:00 a.m. Session Keynote: Establishing Equitable Terms for Data Sharing

Steve Tollman, University of the Witwatersrand, Johannesburg
 
9:30 a.m. Panel Discussion: Presentations (15 min.) and Moderated Discussion (30 min.)

Catherine Kyobutungi, African Population and Health Research Center
Michele Ramsay, University of the Witwatersrand
Jacintha Toohey, COHRED
Caroline Wilkinson, Ubiquity Press
 
11:00 a.m. Break
 
11:15 a.m. Breakout Group Discussion: Defining Fair Access Terms and Establishing Incentives
 
12:15 p.m. Plenary Feedback
 
12:30 p.m. Lunch
 
Session 3: Exploring the “Ethical Imperative” for Data Sharing Chair: Katherine Littler, Wellcome Trust
 
  • – How can we balance the case for sharing data provided by research participants, with the need to safeguard privacy and confidentiality?
Page 83 Cite Bookmark
Suggested Citation: "Appendix A Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2015. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21801.
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  • – How much do we know about the expectations of research participants, ethics committees and other key stakeholders?
  • – How can we build effective governance models to enable data sharing while managing risks and instilling trust?
1:30 p.m. Session Introductory Keynote: The Ethical Imperative for Data Sharing
 
Mike Parker, University of Oxford
 
2:00 p.m. Stakeholder Perspectives on Data Sharing in Low and Middle Income Countries: Findings of a Multi-Site Study
 
  • – Ethical Challenges and Views About Best Practices in Data Sharing: The International Context
        Mike Parker and Susan Bull, University of Oxford
  • – South African Stakeholders’ Perspectives About Ethics and Best Practices in Data Sharing
        Doug Wassenaar and Colleagues, University of KwaZulu Natal
  • – Kenyan Stakeholders’ Perspectives of Ethical Issues and Best Practices in Data Sharing
        Vicki Marsh and colleagues, KEMRI Wellcome Trust Research Programme
  • – Implications of African and Asian Stakeholders’ Perspectives for Ethical Best Practices in Data Sharing
        Susan Bull, University of Oxford
 
3:15 p.m. Questions and Discussion
 
3:30 p.m. Break
 
3:45 p.m. Breakout Group Discussions of Implications and Next Steps
 
5:00 p.m. Feedback and Plenary Discussion: Ethical Best Practices in Data Sharing: Recommendations and Next Steps
 
5:30 p.m. Reflections on the Day’s Discussions
 
6:00 p.m. Close of Session
Page 84 Cite Bookmark
Suggested Citation: "Appendix A Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2015. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21801.
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TUESDAY, MARCH 31, 2015

Session 4: Enabling Data Discoverability, Linkage and Re-Use
 
  • – How can we ensure health research datasets are accessible and useable for researchers and other users?
  • – How can we maximize the potential to link datasets (including those collected for the purposes of research and those collected for other purposes) safely and securely—at a local, regional, and international level?
 
9:00 a.m. Session Keynote: Maximizing Access and Re-Use of Research Data: Lessons About Opportunities and Challenges from the Social Sciences

Myron Gutmann, University of Colorado Boulder
 
9:30 a.m. Enabling Data Linkage to Maximize the Value of Public Health Research Data: Launching a New Forum Report

Felix Ritchie, University of the West of England

Lynn Woolfrey, DataFirst, University of Cape Town
 
10:30 a.m. Break
 
10:45 a.m. Panel Discussion: Building Partnerships for Data Sharing, Linkage and Re-Use

Basia Zaba, London School of Hygiene and Tropical Medicine

Karen Barnes, University of Cape Town

Dan Kibuuka, Statistics South Africa
 
Session 5: Closing Session: Maximizing the Use of Data to Improve Public Health—Ways Forward
 
12:00 p.m. Moderated Plenary Discussion: Summary of Key Points from Across the Two Days and Key Priorities

Chair: Steven Kern, Bill & Melinda Gates Foundation
 
1:00 p.m. Lunch
 
2:00 p.m. Close of Meeting
Page 81 Cite Bookmark
Suggested Citation: "Appendix A Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2015. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21801.
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Page 82 Cite Bookmark
Suggested Citation: "Appendix A Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2015. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21801.
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Page 83 Cite Bookmark
Suggested Citation: "Appendix A Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2015. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21801.
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Page 84 Cite Bookmark
Suggested Citation: "Appendix A Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2015. Sharing Research Data to Improve Public Health in Africa: A Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21801.
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Next Chapter: Appendix B Participants
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