Published on: 8th March 2017
Today, Wednesday 8th March, is International Women’s Day, where people around the world recognise and celebrate the social, economic, political and cultural achievements of women.
Here, we learn more about The Farr Institute’s all-female Public Engagement Team in Scotland. To learn more about our women scientists across the Institution, read our International Women’s Day feature article. In support, The Farr Institute has put the spotlight its on female researchers, who talk about their experiences in using big data in research.
The public engagement team of The Farr Institute’s Scotland Centre consists of three female social scientists with substantial expertise in researching the social and ethical dimensions of medical research and innovation as well as considerable experience of conducting public engagement relating to health and medicine.
Through their work they aim to facilitate public discussions and deliberations about health informatics research and the ways that data is used in research. The group raises awareness through public talks and events including science and comedy festivals. They are also researching public attitudes, preferences and concerns relating to the ways that data is used in research. The group researches and engages using a variety of methods including deliberative workshops, focus groups, a Discrete Choice Experiment and systematic review of the related literature. They are also leading the way in developing best practice in public engagement relating to health informatics research and provide advice to The Farr Institute’s researchers in Scotland on public engagement and the social or ethical dimensions of their work.
Below, this all-female group explain the impact, motivation and inspiration behind their work.
Our research has been published in high impact international journals relating to medical ethics, public health, science and technology studies and sociology.
In addition to making impacts within the academic literature, our work has significantly influenced Scottish Government policy (particularly their data linkage strategy), informed the UK Administrative Data Taskforce, and influenced research and governance practices within the Farr Institute. This work is also shaping emerging good practice and will culminate in an internationally relevant expert position paper on best practice Public Engagement with health informatics research this April.
Our motivation and inspiration
As a team we share a deep commitment to public engagement relating to science, technology and medicine. This is based on our firm belief in the value of public knowledge and insights and the importance of reflecting public interests and preferences in the ways that science, technology and medicine progress.
We build on our substantial previous experience of public engagement in diverse settings to conduct public engagement relating to health informatics research and aspire to The Farr Institute being an international leader in the field of research with and about public engagement.
Our work in this area is timely given the growing commitments to expanding research uses of data in recent years, combined with growing interest in the public acceptability of data sharing and data linkage practices. Recent highly publicised controversies have drawn attention to the importance of ensuring public support for the ways that data are used. Thus, there is increasing attention to public acceptability of secondary uses of data and to ensuring that these uses are understood and supported by the wider public (from whom the data originate). Previous research has also frequently pointed to the importance of public engagement and dialogue to informing public perspectives and ensuring public support for health informatics research.
With ever-increasing amounts of data being collected combined with advances in computer power and data analytics, the way that research is being conducted is changing. Such developments are opening up new possibilities for research whilst simultaneously raising new ethical dilemmas which make public engagement ever more important. Our research responds to this changing landscape by developing best practice in dynamic public engagement to reflect the evolving nature of health informatics research.
Professor Sarah Cunningham-Burley
The team is led by Professor Sarah Cunningham-Burley, Professor of Medical and Family Sociology and Dean of Molecular, Genetic and Population Health Sciences, University of Edinburgh. Sarah’s research spans the study of health and family life and the analysis of social issues in relation to new technologies and health, including developments in genomic medicine. She combines the disciplines of medical sociology and science and technology studies and methodological expertise in qualitative research to examine lay perspectives, understandings and experience, as well as lay/professional relationships particularly in relation to public involvement and engagement in science and medicine, especially related to genetics and genomics. Sarah previously led the public engagement work package of the Wellcome Trust-led Scottish Health Informatics Programme (SHIP) and Generation Scotland (a Scottish family-based biobank).
Sarah was elected to the Academy of Social Sciences in 2012 and the Royal Society of Edinburgh in 2014. She currently holds a Wellcome Trust Senior Investigator Award in Society and Ethics, jointly with Professor Anne Kerr, University of Leeds, to investigate the meanings of patienthood in contemporary cancer research and health care. Sarah also leads the public engagement research programme for the ESRC Administrative Data Research Centre (Scotland).
Dr Mhairi Aitken
Dr Mhairi Aitken is a Research Fellow in The Farr Institute’s Scotland public engagement team. She has a background in Sociology and has been working in the area of public engagement with health informatics research since 2010. In her work she both conducts public engagement and critically examines the processes for doing so.
Before joining The Farr Institute, Mhairi previously worked in the Public Engagement team of the Scottish Health Informatics Programme (SHIP), led by Sarah.
Mhairi’s commitment to innovative PE has taken her well outside her comfort zone, leading her to perform a spoken word show in the Edinburgh Fringe festival, speaking about data-linkage for research within an improvised comedy show and reaching the Scottish final of Famelab (an international science communication competition). Alongside this she has considerable experience of more dialogical methods including deliberative workshops, citizens’ juries, public panels, and science festivals.
Carol Porteous is a Research Fellow working in the public engagement teams of both The Farr Institute Scotland and Administrative Data Research Centre Scotland (ADRC) and has a background in Social Anthropology. Before joining The Farr Institute Scotland, Carol worked in public engagement with The Farr Institute London and has worked in conducting and researching Public Engagement for ten years.
Carol is also currently undertaking a PhD examining patient and public involvement (PPI) in health research and its impacts.
To find out more about The Farr Institute’s UK-wide public engagement work and to contact our regional teams at Farr CIPHER, HeRC, London and Scotland, visit www.farrinstitute.org/public-engagement-involvement