Why the Public Needs a Say in How Patient Data are Used for Covid-19 Responses

1:30pm to 2:30pm GMT (5:30am to 6:30am PST) | All sessions will be delivered live and online via the Gotowebinar system.

This webinar is part of the Power of Population Data Science Series

The global coronavirus pandemic has clearly demonstrated the great urgency to collect and use patient data effectively to understand, track and manage the spread of Covid-19. The value of patient data in this pandemic is undeniable, however considerations around how – and by whom - such data should be collected, accessed and used, and for what purposes, remain to be fully debated and resolved. In this webinar we will discuss the important role of public engagement to shape data practices and governance responses. 

We will reflect on the international consensus statement on public involvement and engagement (PI&E) relating to data-intensive health research published in IJPDS last year. This statement sets out eight principles to underpin best practice in this field and to inform the design, implementation and evaluation of PI&E strategies and activities. The key premise of the consensus statement is that the public should not be characterised as a problem to be overcome, but a key part of the solution towards establishing socially beneficial data-intensive health research for all. In this webinar we will discuss the relevance of this in relation to the pandemic and international responses.

Over the past six months there have been a number of public engagement initiatives relating to Covid-19 and innovative approaches are being developed to engage the public in these discussions during lockdown and beyond. We will discuss some of the work being undertaken in this field and the opportunities and challenges of deliberative public engagement in times of crisis.

Through this discussion we will consider what lessons have been learnt from experiences so far during the pandemic and how these can be applied in relation to future health-related data initiatives.

View original IJPDS article at: https://ijpds.org/article/view/1357

View recorded presentation below.

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Mhairi Aitken Dr Mhairi Aitken is a Senior Research Associate in Newcastle University Business School. She is a Sociologist whose research examines social and ethical dimensions of digital innovation particularly relating to uses of data and AI.

Currently Mhairi works on the EPSRC funded FinTrust project which explores the role of machine learning in banking, particularly in the context of automated lending decisions and whether these lead to bias and financial exclusion: https://www.ncl.ac.uk/press/articles/latest/2018/11/fintrust/

Prior to joining Newcastle University, Mhairi worked as a Research Fellow at the University of Edinburgh where she undertook a programme of research and public engagement to explore social and ethical dimensions of data-intensive health research. She held roles as a Public Engagement Research Fellow in both the Farr Institute of Health Informatics Research and the Scottish Health Informatics Programme (SHIP). Her work in this area has been influential in informing research and governance practices and shaping emerging good practice around public engagement with data-intensive health research.

Mhairi is passionate about public engagement with science and technology and is committed to finding creative ways of engaging members of the public in discussions around the future roles of data and AI in society. She has experience of a range of deliberative engagement methods including citizens' juries, deliberative workshops, focus groups and coordinating a public panel. She is also a regular performer in the Cabaret of Dangerous Ideas at the Edinburgh Festival Fringe and has spoken about her research in shows at the Edinburgh International Science Festival as well as in stand-up comedy clubs.

Stephen ElstubDr Stephen Elstub is a Reader in British Politics at Newcastle University. His main research interests are in the theory and practice of democracy, democratic innovation, political communication, civil society and citizen participation, all viewed through the lens of deliberative democracy.  Stephen has been a POST Academic Fellow at the UK Parliament and an Academic Fellow at the Scottish Parliament, working on how parliamentary committees can be linked with mini-publics. He is currently involved in research on the Climate Assembly UK and the Citizens’ Assembly of Scotland. He is the Co-Editor of the journal Representation: Journal of Representative Democracy, the Handbook of Democratic Innovation and Governance (Edward Elgar 2019), and Deliberative Systems in Theory and Practice (Routledge 2018).

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