Paper at Data Justice 2020 Conference

We are pleased to announce that the PI of the ART/DATA/HEALTH project Aristea Fotopoulou will  be presenting the project at the Data Justice 2020 Conference, held at Cardiff University in Cardiff, UK, hosted by the Data Justice Lab. May 28-29, 2020. Come along to hear more – look out for the paper entitled:

Creating positive impact from data or “feeding the beast”? Opportunities for civic participation and challenges of public engagement with health data through art

Abstract

While the motto “data saves lives” has been guiding research initiatives and approaches to public engagement with health data, there is growing concern about the commercialization of health data, and the impact of automation and AI on health and social care provision. In December 2019, it was announced that Amazon had been given free access to healthcare information collected by the NHS in the UK. Within this context, citizens appear mainly in discussions about trust and public attitudes to health data collection and use. There is less focus on citizens’ active and critical engagement with data around health and wellbeing, while there is huge disparity of skills and access to data between various stakeholders (policy makers, data holders such as citizens and patients, and health professionals).

Data around health and wellbeing could indeed help policy makers and health practitioners take decisions about the allocation of funds for certain public health interventions. However, complex social issues such as health inequality, need rich social data; a grasp of the overlapping barriers to a healthy life for certain marginalised social groups, and an understanding of the experiences of living in areas marked by social deprivation can help introduce alternative types of interventions, such a s social prescribing. At the same time, engaging citizens in creative explorations of data about the health of their communities, and linking personal stories with structural issues, such as poverty, can help communities deal with stigmatisation.

Elaborating on this discussion, this paper presents an ongoing research project that creates a participatory interface between data science and creativity in order to address health inequalities. First we give an overview of the empirical work and present key findings from our community-based fieldwork with three partners: a local charity that helps women affected by domestic abuse; a substance misuse service for women and their children; and a pioneering GP practice in the South East of England. We then examine how civic participation in the datafied society could be understood in relation to critical, creative, health, digital and data literacies, and the opportunities that art offers for gaining voice around issues of health and wellbeing to disadvantaged communities and those working to support them.