Literature DB >> 22464908

The unbearable lightness of citizens within public deliberation processes.

P Lehoux1, G Daudelin, J Abelson.   

Abstract

There is a growing literature examining the involvement of citizens in health policymaking. While determining what form such involvement should take and who should participate is of particular interest to policymakers and researchers, the current ontological understanding of what a citizen is suffers from "lightness." This essay thus seeks to provide more depth by shedding light on the ways in which individuals define what "being" a citizen means for them and choose to embody or not such a role. Inspired by a four-year ethnographic study of a Canadian science/policy network in genetics, which integrated citizens into its operation, this paper provides four biographical sketches that portray the complexity and richness of what these individuals were "made of." We reflect on how they sought to make sense of their participation in the network by drawing on a repertoire of cultural, relational and cognitive resources and on their lived experience. Their capacity to "be" a participant and to be acknowledged as such by the others was shaped by their values and interests and by the contributions they sought to realise throughout their participation. Our discussion suggests that the quest for the "ordinary" citizen is misleading. Instead, acknowledging the sociological concreteness of citizenship and understanding how it may be embodied and exercised should be a key focus in public involvement theory and practice in health care.
Copyright © 2012 Elsevier Ltd. All rights reserved.

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Year:  2012        PMID: 22464908     DOI: 10.1016/j.socscimed.2012.02.023

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  15 in total

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Authors:  Americo Cicchetti; Alexandra Berrino; Marina Casini; Paola Codella; Giuseppina Facco; Alessandra Fiore; Giuseppe Marano; Marco Marchetti; Emanuela Midolo; Roberta Minacori; Pietro Refolo; Federica Romano; Matteo Ruggeri; Dario Sacchini; Antonio G Spagnolo; Irene Urbina; Stefania Vaglio; Giuliano Grazzini; Giancarlo M Liumbruno
Journal:  Blood Transfus       Date:  2016-07       Impact factor: 3.443

Review 2.  Living laboratory: whole-genome sequencing as a learning healthcare enterprise.

Authors:  M Angrist; L Jamal
Journal:  Clin Genet       Date:  2014-09-06       Impact factor: 4.438

3.  Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.

Authors:  Erika Blacksher; Susan Brown Trinidad; R Brian Woodbury; Scarlett E Hopkins; Erica L Woodahl; Bert B Boyer; Wylie Burke; Vanessa Hiratsuka
Journal:  J Empir Res Hum Res Ethics       Date:  2022-02-28       Impact factor: 1.978

4.  Designing a post-genomics knowledge ecosystem to translate pharmacogenomics into public health action.

Authors:  Edward S Dove; Samer A Faraj; Eugene Kolker; Vural Ozdemir
Journal:  Genome Med       Date:  2012-11-29       Impact factor: 11.117

5.  Public values and plurality in health priority setting: What to do when people disagree and why we should care about reasons as well as choices.

Authors:  Rachel Baker; Helen Mason; Neil McHugh; Cam Donaldson
Journal:  Soc Sci Med       Date:  2021-04-02       Impact factor: 4.634

6.  The relevance of different trust models for representation in patient organizations: conceptual considerations.

Authors:  Helene Gerhards; Karin Jongsma; Silke Schicktanz
Journal:  BMC Health Serv Res       Date:  2017-07-11       Impact factor: 2.655

7.  Involving patients and the public in medical and health care research studies: An exploratory survey on participant recruiting and representativeness from the perspective of study authors.

Authors:  Jonas Lander; Holger Langhof; Marie-Luise Dierks
Journal:  PLoS One       Date:  2019-01-07       Impact factor: 3.240

8.  What are the key ingredients for effective public involvement in health care improvement and policy decisions? A randomized trial process evaluation.

Authors:  Antoine Boivin; Pascale Lehoux; Jako Burgers; Richard Grol
Journal:  Milbank Q       Date:  2014-06       Impact factor: 4.911

Review 9.  Do consumer voices in health-care citizens' juries matter?

Authors:  Rachael Krinks; Elizabeth Kendall; Jennifer A Whitty; Paul A Scuffham
Journal:  Health Expect       Date:  2015-09-28       Impact factor: 3.377

10.  Patient, carer and public involvement in major system change in acute stroke services: The construction of value.

Authors:  Christopher McKevitt; Angus I G Ramsay; Catherine Perry; Simon J Turner; Ruth Boaden; Charles D A Wolfe; Naomi J Fulop
Journal:  Health Expect       Date:  2018-01-18       Impact factor: 3.377

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