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

Chair: David Carr, Wellcome Trust

Kobus Herbst, Africa Centre for Health and Population Studies

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?

Steve Tollman, University of the Witwatersrand, Johannesburg

Catherine Kyobutungi, African Population and Health Research Center
Michele Ramsay, University of the Witwatersrand
Jacintha Toohey, COHRED
Caroline Wilkinson, Ubiquity Press

• – How can we balance the case for sharing data provided by research participants, with the need to safeguard privacy and confidentiality?

• – 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?

• – 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

• – 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?

Myron Gutmann, University of Colorado Boulder

Felix Ritchie, University of the West of England

Lynn Woolfrey, DataFirst, University of Cape Town

Basia Zaba, London School of Hygiene and Tropical Medicine

Karen Barnes, University of Cape Town

Dan Kibuuka, Statistics South Africa

Chair: Steven Kern, Bill & Melinda Gates Foundation