The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research

Abstract What has been called the “participatory turn” in health and medicine refers to a general shift from paternalistic and hierarchical, to more collaborative and egalitarian relationships between medical experts and patients/research participants; a shift from what the pragmatic sociologists Bo...

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Autores principales:	Lotje E. Siffels, Tamar Sharon, Andrew S. Hoffman
Formato:	article
Lenguaje:	EN
Publicado:	Springer Nature 2021
Materias:	History of scholarship and learning. The humanities AZ20-999 Social Sciences H
Acceso en línea:	https://doaj.org/article/b0bdae463f5c4289ac80af6f65bc1827
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spelling	oai:doaj.org-article:b0bdae463f5c4289ac80af6f65bc18272021-12-05T12:18:46ZThe participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research10.1057/s41599-021-00979-42662-9992https://doaj.org/article/b0bdae463f5c4289ac80af6f65bc18272021-12-01T00:00:00Zhttps://doi.org/10.1057/s41599-021-00979-4https://doaj.org/toc/2662-9992Abstract What has been called the “participatory turn” in health and medicine refers to a general shift from paternalistic and hierarchical, to more collaborative and egalitarian relationships between medical experts and patients/research participants; a shift from what the pragmatic sociologists Boltanski and Thévenot (2006) call a “domestic” to a “civic” order of worth. Critical scholarship on the participatory turn tends to emphasize discrepancies between ideals of equality and empowerment, and practices of increased individual responsibility and disempowerment. In this paper, we depart from this critical literature by suspending evaluation about authentic and inauthentic ideals and practices. Instead, we explore the issues and challenges that arise in the process of ensuring that ideal and practice align in what we call a civic-participatory style of doing medical research. Drawing on interviews and observations carried out with medical researchers, coordinators and assessors in a longitudinal cohort study called the Personalized Parkinson’s Project (PPP), we show that for study staff it is often unclear how they can meet the demands of reciprocity towards research participants that are presupposed by civic-participatory ideals. In particular, in the context of a study whose aim is the creation of a comprehensive dataset comprised of clinical, environmental and lifestyle data that study participants generously “give” over a period of 2 years, we observed a persistent concern on the part of study staff regarding what and how to “give back”. As we show, study staff negotiate and resolve this tension through recourse to creative workarounds and innovative ways of giving back, including frequent project and scientific updates, newsletters, the designation of personal assessors and pampering Event Days. The paper makes a contribution to the critical literature on the participatory turn by showing the utility of the orders of worth framework in probing the challenges and workarounds that emerge in settings where an incumbent style of organizing medical research (here, the 'civic') comes to challenge practices hitherto organized according to a wholly different logic (in this case, the 'domestic')—without making assumptions about the (in)authenticity of such ideals and practices. Moreover, we contend that this framework offers new tools for evaluating participatory research projects in the form of “good” or “successful” civic–domestic compromises.Lotje E. SiffelsTamar SharonAndrew S. HoffmanSpringer NaturearticleHistory of scholarship and learning. The humanitiesAZ20-999Social SciencesHENHumanities & Social Sciences Communications, Vol 8, Iss 1, Pp 1-10 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	History of scholarship and learning. The humanities AZ20-999 Social Sciences H
spellingShingle	History of scholarship and learning. The humanities AZ20-999 Social Sciences H Lotje E. Siffels Tamar Sharon Andrew S. Hoffman The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research
description	Abstract What has been called the “participatory turn” in health and medicine refers to a general shift from paternalistic and hierarchical, to more collaborative and egalitarian relationships between medical experts and patients/research participants; a shift from what the pragmatic sociologists Boltanski and Thévenot (2006) call a “domestic” to a “civic” order of worth. Critical scholarship on the participatory turn tends to emphasize discrepancies between ideals of equality and empowerment, and practices of increased individual responsibility and disempowerment. In this paper, we depart from this critical literature by suspending evaluation about authentic and inauthentic ideals and practices. Instead, we explore the issues and challenges that arise in the process of ensuring that ideal and practice align in what we call a civic-participatory style of doing medical research. Drawing on interviews and observations carried out with medical researchers, coordinators and assessors in a longitudinal cohort study called the Personalized Parkinson’s Project (PPP), we show that for study staff it is often unclear how they can meet the demands of reciprocity towards research participants that are presupposed by civic-participatory ideals. In particular, in the context of a study whose aim is the creation of a comprehensive dataset comprised of clinical, environmental and lifestyle data that study participants generously “give” over a period of 2 years, we observed a persistent concern on the part of study staff regarding what and how to “give back”. As we show, study staff negotiate and resolve this tension through recourse to creative workarounds and innovative ways of giving back, including frequent project and scientific updates, newsletters, the designation of personal assessors and pampering Event Days. The paper makes a contribution to the critical literature on the participatory turn by showing the utility of the orders of worth framework in probing the challenges and workarounds that emerge in settings where an incumbent style of organizing medical research (here, the 'civic') comes to challenge practices hitherto organized according to a wholly different logic (in this case, the 'domestic')—without making assumptions about the (in)authenticity of such ideals and practices. Moreover, we contend that this framework offers new tools for evaluating participatory research projects in the form of “good” or “successful” civic–domestic compromises.
format	article
author	Lotje E. Siffels Tamar Sharon Andrew S. Hoffman
author_facet	Lotje E. Siffels Tamar Sharon Andrew S. Hoffman
author_sort	Lotje E. Siffels
title	The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research
title_short	The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research
title_full	The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research
title_fullStr	The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research
title_full_unstemmed	The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research
title_sort	participatory turn in health and medicine: the rise of the civic and the need to ‘give back’ in data-intensive medical research
publisher	Springer Nature
publishDate	2021
url	https://doaj.org/article/b0bdae463f5c4289ac80af6f65bc1827
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The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research

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