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ERC

VITAL Report Summary

Project ID: 639275
Funded under: H2020-EU.1.1.

Periodic Reporting for period 1 - VITAL (The Vitality of Disease - Quality of Life in the Making)

Reporting period: 2015-06-01 to 2016-11-30

Summary of the context and overall objectives of the project

Epidemiological reports from around the world suggest that more people than ever before are living with (especially chronic) diseases. As a consequence, sustained efforts to reduce morbidity and mortality rates have been joined by systematised efforts to improve the lives – the quality of life – of those living with disease in ways that are measurable and auditable.

VITAL will focus on the making of ‘quality of life’. While social studies of medicine have of late been marked by a ‘bio-turn’, it is apparent that within contemporary medicine, life is envisaged as much more than cellular and molecular activity; it is also a social activity and a personal experience. Not only is life sustained, it is also lived. In recent decades, morbid living – living with disease – has come to be the object of novel forms of knowledge, expertise, measurement and management while also generating new medical practices and attendant ways of relating to oneself.

VITAL suggests a shift in attention from the ways in which the social sciences have previously studied morbid living and related issues of quality of life. Rather than continue longstanding efforts to understand how people cope with disease or to refine definitions and instruments for measuring the quality of life of the sick, in VITAL we will empirically study the co-production of ‘quality of life’ within healthcare through four ethnographically-grounded studies of how ‘quality of life’ is assembled, mobilised, negotiated and practiced in concrete medical settings. The four studies will focus on how knowledge about living with disease is assembled and mobilised, on the one hand, and how morbid living is negotiated and practiced on the other.

The key outcomes of VITAL will be theoretical advancement of understandings of vitality in the 21st century beyond molecular biology and methodological innovation to facilitate empirical study of co-production processes that involve social science knowledge and practice.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

The VITAL project has gotten off to a great start. The postdoc “Learning to Live with Disease” was awarded to Dr. Anna Mann (start date 1 May 2016) who holds a PhD from the University of Amsterdam and the postdoc “Standardised Subjects” was awarded to Dr. Arseli Dokumaci (start date 1 June 2016), a postdoc from the Department of Social Studies of Medicine, McGill University. Finally, Dr. Jieun Lee, who holds a PhD from University of California Davis was awarded the postdoc on “Associating Dementia” (start date 1 September 2016). A kick-off meeting was held in June 2016 and weekly project meetings were held from September to December 2016 to further conceptualise and design each of the 4 VITAL ethnographies collectively. A VITAL website has been established and will be updated continuously just as the PI is using academic social media to give updates on the Progress of the project

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

2017 has been designated as an empirical year of data collection, towards the end of which the team will reconvene. The period 1 January 2018 until the end of the project on 31 May 2020 (2½ years) will be dedicated to data analysis, project workshops and conferences, as well as dissemination. The first publication outputs from VITAL will emerge in 2017 and will continue through to the end of the project, just as systematic dissemination activities will begin. The designing of the four VITAL ethnographies with partners in hospitals, Clinics and research institutions has set the terrain for concrete impacts on efforts to improve the lives of those living with disease.
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