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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
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?
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.
×
  • – 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
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.
×

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
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.
×
Page 81
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.
×
Page 82
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.
×
Page 83
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.
×
Page 84
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Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

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