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      Advancing a collective vision for equity‐based cocreation through prototyping at an international forum

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          Abstract

          Background

          Cocreation has the potential to engage people with lived and living experiences in the design and evaluation of health and social services. However, guidance is needed to better include people from equity‐deserving groups (EDGs), who are more likely to face barriers to participation, experience ongoing or historical harm, and benefit from accessible methods of engagement.

          Objective

          The aim of this international forum (CoPro2022) was to advance a collective vision for equity‐based cocreation.

          Design

          A participatory process of engagement in experiential colearning and arts‐based creative and reflective dialogue. Visual prototypes were created and synthesised to generate a collective vision for inclusive equity‐based cocreation.

          Setting and Participants

          The Forum was held at the Gathering Place by the Grand River in Ohsweken, Ontario, Canada. A total of 48 participants attended the forum. They were purposely invited and have intersecting positionalities (21 academic experts, six experience experts, 10 trainees, and 11 members of EDGs) from nine countries (Bangladesh, Botswana, Canada, England, Italy, Norway, Scotland, Singapore, Sweden).

          CoPro2022 Activities

          CoPro2022 was an immersive experience hosted on Indigenous land that encouraged continuous participant reflection on their own worldviews and those of others as participants openly discussed the challenges and opportunities with engaging EDGs in cocreation activities. Visual prototypes and descriptions created in small groups were informed by participants' reflections on the panel presentations at the Forum and their own experiences with equity‐based cocreation. Following the event, the authorship team inductively coded themes from the prototype descriptions and met to discuss the cross‐cutting themes. These informed the design of an illustrated collective vision for Equity Based Co‐Creation (EqCC).

          Results

          Six prototypes were cocreated by each small group to illustrate their vision for EqCC. Within these, four cross‐cutting themes were identified: (i) go to where people are, (ii) nurture relationships and creativity, (iii) reflect, replenish and grow, (iv) and promote thriving and transformation. These four themes are captured in the Collective EqCC Vision to guide a new era of inclusive excellence in cocreation activities.

          Patient or Public Contribution

          Service users, caregivers, and people with lived experience were involved in leading the design of the CoPro2022 and co‐led the event. This included activities at the event such as presenting, facilitating small and large group discussion, leading art‐based activities, and reflecting with the team on the lessons learned. People with lived experience were involved in the analysis and knowledge sharing from this event. Several members of the research team (students and researchers) also identified as members of EDGs and were invited to draw from their personal and academic knowledge.

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          Most cited references25

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          Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups

          Background Conventional systematic review techniques have limitations when the aim of a review is to construct a critical analysis of a complex body of literature. This article offers a reflexive account of an attempt to conduct an interpretive review of the literature on access to healthcare by vulnerable groups in the UK Methods This project involved the development and use of the method of Critical Interpretive Synthesis (CIS). This approach is sensitised to the processes of conventional systematic review methodology and draws on recent advances in methods for interpretive synthesis. Results Many analyses of equity of access have rested on measures of utilisation of health services, but these are problematic both methodologically and conceptually. A more useful means of understanding access is offered by the synthetic construct of candidacy. Candidacy describes how people's eligibility for healthcare is determined between themselves and health services. It is a continually negotiated property of individuals, subject to multiple influences arising both from people and their social contexts and from macro-level influences on allocation of resources and configuration of services. Health services are continually constituting and seeking to define the appropriate objects of medical attention and intervention, while at the same time people are engaged in constituting and defining what they understand to be the appropriate objects of medical attention and intervention. Access represents a dynamic interplay between these simultaneous, iterative and mutually reinforcing processes. By attending to how vulnerabilities arise in relation to candidacy, the phenomenon of access can be better understood, and more appropriate recommendations made for policy, practice and future research. Discussion By innovating with existing methods for interpretive synthesis, it was possible to produce not only new methods for conducting what we have termed critical interpretive synthesis, but also a new theoretical conceptualisation of access to healthcare. This theoretical account of access is distinct from models already extant in the literature, and is the result of combining diverse constructs and evidence into a coherent whole. Both the method and the model should be evaluated in other contexts.
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            The dark side of coproduction: do the costs outweigh the benefits for health research?

            Background Coproduction, a collaborative model of research that includes stakeholders in the research process, has been widely advocated as a means of facilitating research use and impact. We summarise the arguments in favour of coproduction, the different approaches to establishing coproductive work and their costs, and offer some advice as to when and how to consider coproduction. Debate Despite the multiplicity of reasons and incentives to coproduce, there is little consensus about what coproduction is, why we do it, what effects we are trying to achieve, or the best coproduction techniques to achieve policy, practice or population health change. Furthermore, coproduction is not free risk or cost. Tensions can arise throughout coproduced research processes between the different interests involved. We identify five types of costs associated with coproduced research affecting the research itself, the research process, professional risks for researchers and stakeholders, personal risks for researchers and stakeholders, and risks to the wider cause of scholarship. Yet, these costs are rarely referred to in the literature, which generally calls for greater inclusion of stakeholders in research processes, focusing exclusively on potential positives. There are few tools to help researchers avoid or alleviate risks to themselves and their stakeholders. Conclusions First, we recommend identifying specific motivations for coproduction and clarifying exactly which outcomes are required for whom for any particular piece of research. Second, we suggest selecting strategies specifically designed to enable these outcomes to be achieved, and properly evaluated. Finally, in the absence of strong evidence about the impact and process of coproduction, we advise a cautious approach to coproduction. This would involve conscious and reflective research practice, evaluation of how coproduced research practices change outcomes, and exploration of the costs and benefits of coproduction. We propose some preliminary advice to help decide when coproduction is likely to be more or less useful.
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              Research co-design in health: a rapid overview of reviews

              Background Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design – the meaningful involvement of end-users in research – may help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised. Methods Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal Research Involvement and Engagement. Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised. Results A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of ‘research co-design’ and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design. Conclusions Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.
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                Author and article information

                Contributors
                Role: Associate Professorphoenimp@mcmaster.ca
                Role: Professor
                Role: Research Assistant
                Role: PhD Candidate
                Role: Postdoctoral Researcher
                Role: PhD Student
                Role: PhD Student
                Role: PhD Candidate
                Role: Associate Professor
                Role: Associate Professor
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                03 April 2024
                April 2024
                : 27
                : 2 ( doiID: 10.1111/hex.v27.2 )
                : e14041
                Affiliations
                [ 1 ] School of Rehabilitation Sciences, CanChild McMaster University Hamilton Ontario Canada
                [ 2 ] School of Rehabilitation Sciences McMaster University Hamilton Ontario Canada
                [ 3 ] Ahousaht First Nation Ahousat British Colombia Canada
                [ 4 ] Indigenous Project Coordinator, School of Medicine Toronto Metropolitan University Toronto Ontario Canada
                [ 5 ] Health Research Methods, Evidence, and Impact (Health Policy) McMaster University Hamilton Ontario Canada
                [ 6 ] Global Health McMaster University Hamilton Ontario Canada
                [ 7 ] School of Social Work and Indigenous Studies Department McMaster University; Algonquin/Mohawk, Member of the Six Nations of the Grand River Canada
                [ 8 ] Health Policy and Management, DeGroote School of Business McMaster University Hamilton Ontario Canada
                [ 9 ] McMaster University Hamilton Canada
                Author notes
                [*] [* ] Correspondence Michelle Phoenix, PhD, Associate Professor, Institute for Applied Health Sciences, McMaster University, 1400 Main St West, Room 449, Hamilton, ON L8S 1C7, Canada.

                Email: phoenimp@ 123456mcmaster.ca

                Author information
                http://orcid.org/0000-0002-6190-3997
                http://orcid.org/0000-0002-1937-0103
                http://orcid.org/0000-0001-9925-4411
                http://orcid.org/0000-0002-1357-1158
                http://orcid.org/0009-0006-9363-0547
                http://orcid.org/0000-0003-4042-9824
                http://orcid.org/0000-0001-6879-6875
                http://orcid.org/0000-0003-0546-6910
                Article
                HEX14041
                10.1111/hex.14041
                10989061
                38567877
                7ec9a290-fe94-445d-8021-c8e1a820b945
                © 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 26 January 2024
                : 06 December 2023
                : 18 March 2024
                Page count
                Figures: 7, Tables: 0, Pages: 12, Words: 7183
                Funding
                Funded by: Social Sciences and Humanities Research Council
                Award ID: 611‐2021‐0231
                Funded by: Strategic Alignment Fund
                Funded by: Strategic Excellence in Retention and Recruitment Funding from McMaster University
                Categories
                Original Article
                Original Articles
                Custom metadata
                2.0
                April 2024
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.4.0 mode:remove_FC converted:03.04.2024

                Health & Social care
                arts‐based research,caregiver engagement,cocreation,codesign,equity,integration,patient engagement

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