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      Examining the ethical and social issues of health technology design through the public appraisal of prospective scenarios: a study protocol describing a multimedia-based deliberative method

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          Abstract

          Background

          The design of health technologies relies on assumptions that affect how they will be implemented, such as intended use, complexity, impact on user autonomy, and appropriateness. Those who design and implement technologies make several ethical and social assumptions on behalf of users and society more broadly, but there are very few tools to examine prospectively whether such assumptions are warranted and how the public define and appraise the desirability of health innovations. This study protocol describes a three-year study that relies on a multimedia-based prospective method to support public deliberations that will enable a critical examination of the social and ethical issues of health technology design.

          Methods

          The first two steps of our mixed-method study were completed: relying on a literature review and the support of our multidisciplinary expert committee, we developed scenarios depicting social and technical changes that could unfold in three thematic areas within a 25-year timeframe; and for each thematic area, we created video clips to illustrate prospective technologies and short stories to describe their associated dilemmas. Using this multimedia material, we will: conduct four face-to-face deliberative workshops with members of the public (n = 40) who will later join additional participants (n = 25) through an asynchronous online forum; and analyze and integrate three data sources: observation, group deliberations, and a self-administered participant survey.

          Discussion

          This study protocol will be of interest to those who design and assess public involvement initiatives and to those who examine the implementation of health innovations. Our premise is that using user-friendly tools in a deliberative context that foster participants’ creativity and reflexivity in pondering potential technoscientific futures will enable our team to analyze a range of normative claims, including some that may prove problematic and others that may shed light over potentially more valuable design options. This research will help fill an important knowledge gap; intervening earlier in technological development could help reduce undesirable effects and inform the design and implementation of more appropriate innovations.

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          Most cited references16

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          Methodological and ethical issues in Internet-mediated research in the field of health: an integrated review of the literature.

          The advantages and disadvantages of using the Internet in both qualitative and quantitative researches in the field of health are readily available in the literature, but little examination has been made of the factors to be considered in developing and running Internet-mediated research. A bibliographic search of English language publications indexed in eight computerized databases (EBSCO, EMBASE, MedLine, PsycInfo, CINAHL, PubMed, Cochrane, and TRIP) was undertaken with no limit set for the data of publication. The keywords Internet, research, quality, credibility, reliability, and validity were used in all possible combinations, and mappings to headings made wherever possible. The search revealed three key areas in setting up and undertaking Internet-mediated research: addressing sampling biases, ensuring ethical practice, and exploring the validity of data collected using an online interface. This paper contributes to the ongoing development of quality standards in the conduct and write-up of Internet-mediated research in the field of health.
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            Focus group research and "the patient's view".

            A clear emphasis on the patient's view is discernible in the health services research literature of the past decades. Such a switch to patients' perspectives has been greatly facilitated by a wider acceptance and use of qualitative methods. In particular, focus groups are often used to uncover the range and depth of experiences of health services users and chronically ill individuals. Although this method contributes to a better understanding of patients' perspectives and practices, a number of analytical considerations have been overlooked. The aim of this paper is to consider how to conceptualise and analyse interactions in focus group research. We argue that focus groups are social spaces in which participants co-construct the "patient's view" by sharing, contesting and acquiring knowledge. Focus groups conducted with home care patients in Quebec, Canada (on antibiotic intravenous therapy, parenteral nutrition, peritoneal dialysis and oxygen therapy) are used to illustrate three interactive processes at work in focus groups: (1) establishing oneself as experienced and knowledgeable; (2) establishing oneself as in search of information and advice; and (3) validating or challenging one another's knowledge claims. We develop an analytical template focused on the subtle dynamics underpinning the various and at times competing claims of patients. This template acknowledges the processes through which participants attribute authority to the claims of others, including the focus group moderator. We find that focus group research does not derive epistemological authority simply from the identity of its participants. Rather, an emerging consensus about what constitutes the patient's view is the result of context-dependent social interactions that need to be scrutinised.
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              What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations.

              This article seeks to establish that the social sciences have an important contribution to make to the study of ethics. The discussion is framed around three questions: (i) what theoretical work can the social sciences contribute to the understanding of ethics? (ii) what empirical work can the social sciences contribute to the understanding of ethics? And (iii) how does this theoretical and empirical work combine, to enhance the understanding of ethics, as a field of analysis and debate, is socially constituted and situated? Through these questions the argument goes beyond the now commonly cited objection to the over-simplistic division between normative and descriptive ethics (that assigns the social sciences the 'handmaiden' role of simply providing the 'facts'). In extending this argument, this article seeks to establish, more firmly and in more detail, that: (a) the social sciences have a longstanding theoretical interest analysing the role that a concern with ethics plays in explanations of social change, social organisation and social action; (b) the explanations that are based on the empirical investigations conducted by social scientists exemplify the interplay of epistemological and methodological analyses so that our understanding of particular substantive issues is extended beyond the conventional questions raised by ethicists, and (c) through this combination of theoretical and empirical work, social scientists go beyond the specific ethical questions of particular practices to enquire further into the social processes that lie behind the very designation of certain matters as being 'ethical issues.'
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                Author and article information

                Contributors
                Journal
                Implement Sci
                Implement Sci
                Implementation Science : IS
                BioMed Central
                1748-5908
                2014
                21 June 2014
                : 9
                : 81
                Affiliations
                [1 ]Department of Health Administration, University of Montreal, Institute of Public Health Research of University of Montreal (IRSPUM), Montreal, Canada
                [2 ]School of Industrial Design, University of Montreal, Montreal, Canada
                [3 ]Department of Social and Preventive Medicine, University of Montreal, IRSPUM, Montreal, Canada
                [4 ]Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada
                [5 ]Biomedical Ethics Unit, Social Studies of Medicine Department, McGill University, Montreal, Canada
                [6 ]IRSPUM, University of Montreal, Montreal, Canada
                Article
                1748-5908-9-81
                10.1186/1748-5908-9-81
                4229879
                24952582
                2d83e283-4c9d-4521-a566-e87620e7e3c0
                Copyright © 2014 Lehoux et al.; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 19 April 2014
                : 18 June 2014
                Categories
                Study Protocol

                Medicine
                health technology,ethics,audiovisual based-elicitation methods,prospective scenarios,deliberative methods,public involvement

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