This webinar is part of the Power of Population Data Science Series
Data-intensive health research is a fast moving field in which public involvement and engagement (PI&E) is essential for developing socially acceptable and ethically robust processes and ensuring a social license for research practices. Nevertheless while some consensus is emerging around the importance of PI&E, commitments and practices are varied. In this presentation I will discuss a collaborative process undertaken to establish a set of principles to inform future best practice in PI&E with data-intensive health research and will present the recently published consensus statement which resulted from this.
A one-day consensus workshop was held in Manchester, U.K. in April 2017 and attended by 31 international participants from six countries, with a range of expertise relating to PI&E with data-intensive health research. Participants took part in facilitated discussions to identify key principles and a consensus statement was written to reflect the discussions at the workshop, this developed through iterative drafts on which all workshop participants as well as the four Farr Institute public panels were consulted.
The resulting consensus statement sets out key principles to establish a secure role for PI&E related to data-intensive health research internationally and to ensure best practice in its execution. While methods used may not vary greatly from PI&E with other types of research, or other policy areas, we have identified a number of particular features of data-intensive health research which make PI&E in this area worthy of special consideration. Often using data from multiple sources without explicit consent, PI&E in data-intensive health research is particularly important for raising awareness, for giving people a voice and for enabling people to participate in processes of research and governance. The consensus statement sets out the key principles to guide future best practice in PI&E with data-intensive health research.
The emergence of data intensive health research and the importance of the social contract upon which it relies, demands that we move beyond rhetorical commitments and engage anew with clearly stated principles to build PI\&E into data-intensive health research at all levels. Our key premise is that the public should not be characterised as a problem to be overcome but a key part of the solution to establish socially beneficial data-intensive health research for all.
View original IJPDS article at: https://ijpds.org/article/view/586
Watch recorded presentation below.
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Speakers
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.
Sarah Cunningham-Burley is Professor of Medical and Family Sociology and Dean of Molecular, Genetic and Population Health Sciences: Edinburgh Medical School, University of Edinburgh. She researches and teaches in a multi-disciplinary environment, bringing social scientific perspectives and methods to understanding and practice in medicine, public health and health policy. She is committed to public engagement in science and social science and embeds this in her research. She currently holds a Wellcome Trust Senior Investigator Award, ‘Transformations and Translations in Patienthood: cancer in the post-genomic era’, jointly with Professor Anne Kerr, University of Leeds, and is Director of a new Centre for Biomedicine, Self and Society, which is supported by a Wellcome Trust Discretionary Award. She led the public engagement research strand for both the FARR Institute Scotland and the Administrative Data Research Centre Scotland, focusing on using dialogue and deliberation to understand public perceptions and interest in data intensive health research and using engagement to support good governance. In this capacity she worked closely with Dr Mhairi Aitken and Carol Porteous.
