Events from the Data Research, Access and Governance Network (DRAGoN)

Seminar Series

The DRAGoN Seminar Series runs bi-weekly during term-time. We aim to bring together international experts from two research strands: data ethics and data governance. Every fortnight, two speakers will deliver brief presentations followed by a Q&A session with the virtual audience. We alternate sessions focusing on the ethical aspects of data access and use, and the other session on governance of data. Everyone is welcome!

If you would like to receive email invites for each seminar session, please sign up to our mailing list using the link provided on this page. 

Governance of confidential research data in low- and middle- income countries – introduction of the project and current progress

• Date: Wednesday 29 November 2023 (rescheduled from 18 October 2023)
• Time: 18:00-19:00
• Venue: Online (MS Teams)

DRAGoN has started a project on the governance of confidential data for research use in low- and middle-income countries (LMICs). This project includes a PhD thesis by Pedro Ferrer Breda, which consists of a case study of Mexico’s INEGI (National Institute of Statistics and Geography) and INSP (National Institute of Public Healthcare) to understand data access decisions in Mexico, supported by Natalia Eugenia Volkow Fernandez, INEGI’s Director of Microdata Access. This talk will describe this project’s current progress and explain future plans for the development of support networks for good governance of data for research use in LMICs. Pedro Ferrer Breda and Natalia Eugenia Volkow Fernandez will host this talk.

Register to attend

Part of the team: Effecting change and sharing power in healthcare settings

Date: Wednesday 6 December 2023
Time: 18:00-19:00
Venue: Online (MS Teams)

Jessie Stanier (UWE Bristol) and Dr Rachel Purtell (University of Exeter) discuss the challenges faced and lessons learned when dealing with patient data for their paper, Part of the team: Effecting change and sharing power in healthcare settings. 

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Past seminar recordings

Watch the YouTube recordings of past DRAGoN talks  below:

• Sphere transgressions: risks and benefits of the digitisation of health - Professor Tamar Sharon (Radboud University) and Angela Daly discuss the ‘Googlization’ of health beyond privacy and market transgressions.

• Virtual patient or health data management? Methods to protect confidentiality of data - Luk Arbuckle and Matthias Braun examine innovative solutions to digital representation and data sharing in health.

• A giant with feet of clay? Concept of personal data as backbone for data governance - Andrea Martani explores if it’s sustainable to keep the personal vs non-personal distinction as the backbone of how data governance is understood.

• Sharing data between institutions - Frédérique Horwood and Olivier Thereaux discuss the risks and challenges associated with this important topic.

• How does society use statistics and understand data? Two short talks Gaby Umbach (EUI, GlobalStat): "The role of data in policy-making and the requirements for data literacy" and Hannah Little (UWE Bristol): "Communicating data rights issues in a complicated world".

• Developing data governance for research in low and middle-income countries - Julie Mytton and Elizabeth Green discuss data governance and management in Nepal and lessons learned from a virtual summer school respectively. 

• Airborne DNA: Technical, practical, and ethical potentialities and challenges - Ben Williams and Francesco Tava discuss the concept and logic of this approach then raise a few ethical considerations arising from it. 

• Managing responsible AI discovery, design and innovation - How can we encourage responsible innovation in AI? David Leslie (The Alan Turing Institute)  and Jim Smith (UWE Bristol) discuss.

• Building trust in research based on restricted data - Sam Smith and Felix Richie tackle the question "How do we build trust in research findings when the data is not available for all to see?"

• Engaging the research community in patient input - Natalie Banner and Amanda White explore good practices when using patient data in research, and the lessons that can be drawn for other fields working with confidential personal data. 

• You can't have AI both ways: Balancing data privacy and access - Stuart McLennan and Marieke Bak explore the different ethical/legal grounds and their advantages and disadvantages in the context of medical AI.