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      Establishing a peer advisory board in a mental health ethics research group – challenges, benefits, facilitators and lessons learned

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          Abstract

          While participatory methods are regarded as beneficial in many areas of psychiatric research, they are still rarely considered in the field of mental health ethics. Yet, there are several epistemic and ethical reasons why participatory research is particularly important in this field, such as the high relevance of experiential knowledge for ethical analyses. In this article, we report our experiences with establishing a peer advisory board for an existing mental health ethics research group. We demonstrate how a peer advisory board can provide low-threshold opportunities for various forms of participation, which can occur simultaneously within one research project. We first describe how we established the peer advisory board and explain its structure. We then give an overview of several research projects that involved various forms of participation by members of the peer advisory board, such as the development of a template for a psychiatric advance directive, the co-writing of articles, and the organization of scientific events. We discuss the challenges, benefits, and facilitators of a peer advisory board from our different vantage points as service users, relatives, clinicians, and researchers. Challenges included organizational barriers such as time constraints and rigid bureaucratic structures within academic institutions and funding bodies as well as the persistence of power imbalances between members of the research group and the peer advisory board. Benefits included the opportunity for personal development and capacity building among both peer advisory board members and members of the research group, and the multiplication of research results among the relevant communities. Based on a reflection on our own experiences, we argue that participatory research in mental health ethics is not only ethically and epistemically desirable but also practically feasible. We close by formulating several lessons learned from our experiences.

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          A Ladder Of Citizen Participation

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            Patient engagement in research: a systematic review

            Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
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              Principles of Biomedical Ethics

              Principles of Biomedical Ethics provides a highly original, practical, and insightful guide to morality in the health professions. Acclaimed authors Tom L. Beauchamp and James F. Childress thoroughly develop and advocate for four principles that lie at the core of moral reasoning in health care: respect for autonomy, nonmaleficence, beneficence, and justice. Drawing from contemporary research--and integrating detailed case studies and vivid real-life examples and scenarios--they demonstrate how these prima facie principles can be expanded to apply to various conflicts and dilemmas, from how to deliver bad news to whether or not to withhold or withdraw life-sustaining treatments.<br> <br> Ideal for courses in biomedical ethics, bioethics, and health care ethics, the text is enhanced by hundreds of annotated citations and a substantial introduction that clarifies key terms and concepts.<br>
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                Author and article information

                Contributors
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                Journal
                Front Psychiatry
                Front Psychiatry
                Front. Psychiatry
                Frontiers in Psychiatry
                Frontiers Media S.A.
                1664-0640
                28 February 2025
                2025
                : 16
                : 1516996
                Affiliations
                [1] 1 Institute of the History of Medicine and Ethics in Medicine, Charité - Universitätsmedizin Berlin , Berlin, Germany
                [2] 2 Department of Psychiatry, Psychotherapy and Preventive Medicine, LWL University Hospital, Ruhr University Bochum , Bochum, Germany
                [3] 3 Junior Professorship for Medical Ethics with a Focus on Digitization, Faculty of Health Sciences Brandenburg, University of Potsdam , Potsdam, Germany
                [4] 4 Institute for Medical Ethics and History of Medicine, Ruhr University Bochum , Bochum, Germany
                [5] 5 Peer Advisory Board, BMBF Research Group SALUS, Ruhr University Bochum , Bochum, Germany
                [6] 6 Institute for Ethics, History and Theories of Medicine, University Münster , Münster, Germany
                Author notes

                Edited by: Ottar Ness, Norwegian University of Science and Technology, Norway

                Reviewed by: Jack Tomlin, University of Greenwich, United Kingdom

                Kristin Berre Ørjasæter, Nord University, Norway

                *Correspondence: Mirjam Faissner, mirjam.faissner@ 123456charite.de
                Article
                10.3389/fpsyt.2025.1516996
                11907373
                40092462
                991e8af4-b2e6-482f-a1cb-79371792daf4
                Copyright © 2025 Faissner, Braun, Efkemann, Gaillard, Haferkemper, Hempeler, Heuer, Lux, Potthoff, Scholten, Spiegel, Stefaniak, Thesing, Werning and Gather

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 25 October 2024
                : 17 January 2025
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 48, Pages: 10, Words: 6784
                Funding
                Funded by: Bundesministerium für Bildung und Forschung , doi 10.13039/501100002347;
                The author(s) declare financial support was received for the research, authorship, and/or publication of this article. This research is part of the project SALUS (2018-2024) and was supported by a grant from the German Federal Ministry of Education and Research (grant number 01GP1792). EB and MF would like to thank the Brocher Foundation for supporting their work on this paper during a research stay.
                Categories
                Psychiatry
                Hypothesis and Theory
                Custom metadata
                Social Psychiatry and Psychiatric Rehabilitation

                Clinical Psychology & Psychiatry
                participatory research,service user involvement,medical ethics,psychiatry,consumer/survivor/ex-patient movement,experiential knowledge

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