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      Weaving community-based participatory research and co-design to improve opioid use treatments and services for youth, caregivers, and service providers

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          Abstract

          Integrating the voices of service users and providers in the design and delivery of health services increases the acceptability, relevance, and effectiveness of services. Such efforts are particularly important for youth opioid use treatments and services, which have failed to consider the unique needs of youth and families. Applying community-based participatory research (CBPR) and co-design can facilitate this process by contextualizing service user experiences at individual and community levels and supporting the collaborative design of innovative solutions for improving care. However, few studies demonstrate how to effectively integrate these methods and engage underserved populations in co-design. As such, this manuscript describes how our team wove CBPR and co-design methods to develop solutions for improving youth opioid use treatments and services in Canada. As per CBPR methods, national, provincial, and community partnerships were established to inform and support the project’s activities. These partnerships were integral for recruiting service users (i.e., youth and caregivers) and service providers to co-design prototypes and support local testing and implementation. Co-design methods enabled understanding of the needs and experiences of youth, caregivers, and service providers, resulting in meaningful community-specific innovations. We used several engagement methods during the co-design process, including regular working group meetings, small group discussions, individual interviews and consultations, and feedback grids. Challenges involved the time commitment and resources needed for co-design, which were exacerbated by the COVID-19 pandemic and limited our ability to engage a diverse sample of youth and caregivers in the process. Strengths of the study included youth and caregiver involvement in the co-design process, which centered around their lived experiences; the therapeutic aspect of the process for participants; and the development of innovations that were accepted by design partners.

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          Review of community-based research: assessing partnership approaches to improve public health.

          Community-based research in public health focuses on social, structural, and physical environmental inequities through active involvement of community members, organizational representatives, and researchers in all aspects of the research process. Partners contribute their expertise to enhance understanding of a given phenomenon and to integrate the knowledge gained with action to benefit the community involved. This review provides a synthesis of key principles of community-based research, examines its place within the context of different scientific paradigms, discusses rationales for its use, and explores major challenges and facilitating factors and their implications for conducting effective community-based research aimed at improving the public's health.
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            Co-creation and the new landscapes of design

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              Engaging patients to improve quality of care: a systematic review

              Background To identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services. Methods We searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients’ experiences of being engaged. Results Forty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign—discrete products largely derived from low-level engagement (consultative unidirectional feedback)—whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients’ experiences of the engagement process (n = 12; 25%). While most experiences were positive—increased self-esteem, feeling empowered, or independent—some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made. Conclusions Patient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients’ experiences of the engagement process and whether these outcomes translate into improved quality of care. Registration N/A (data extraction completed prior to registration on PROSPERO). Electronic supplementary material The online version of this article (10.1186/s13012-018-0784-z) contains supplementary material, which is available to authorized users.
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                Author and article information

                Contributors
                Role: Data curationRole: Formal analysisRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: Writing – original draftRole: Writing – review & editing
                Role: Data curationRole: Formal analysisRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: Writing – original draftRole: Writing – review & editing
                Role: MethodologyRole: Project administrationRole: ResourcesRole: Writing – review & editing
                Role: InvestigationRole: MethodologyRole: Project administrationRole: Writing – review & editing
                Role: Data curationRole: Formal analysisRole: ResourcesRole: Writing – review & editing
                Role: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS One
                plos
                PLOS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                18 April 2024
                2024
                : 19
                : 4
                : e0297532
                Affiliations
                [1 ] Foundry, Vancouver, British Columbia, Canada
                [2 ] Providence Health Care, Vancouver, British Columbia, Canada
                [3 ] Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
                [4 ] Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, British Columbia, Canada
                [5 ] Canadian Centre on Substance Use and Addiction, Ottawa, Ontario, Canada
                [6 ] Centre for Advancing Health Outcomes, Vancouver, British Columbia, Canada
                [7 ] Foundry Victoria, Victoria, British Columbia, Canada
                [8 ] Providence Research, Vancouver, British Columbia, Canada
                Universidad Internacional de La Rioja, SPAIN
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Author information
                https://orcid.org/0000-0002-5355-7932
                https://orcid.org/0000-0002-8772-3185
                Article
                PONE-D-23-10966
                10.1371/journal.pone.0297532
                11025903
                38635804
                32d350f9-2c33-4d45-83a4-fe6524fe2f63
                © 2024 Turuba et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 15 May 2023
                : 30 December 2023
                Page count
                Figures: 3, Tables: 3, Pages: 21
                Funding
                Funded by: Health Canada
                Award Recipient :
                Funded by: funder-id http://dx.doi.org/10.13039/501100000245, Michael Smith Health Research BC;
                Award ID: 17696
                Award Recipient :
                Funded by: funder-id http://dx.doi.org/10.13039/501100000245, Michael Smith Health Research BC;
                Award ID: RT-2021-1698
                Award Recipient :
                The Improving Treatment Together Project has been made possible through a financial contribution from Health Canada. The views herein do not necessarily represent the views of Health Canada. KM: Health Research/Centre for Health Evaluation & Outcome Sciences Research Trainee Award [Grant #:RT-2021-1698] Michael Smith Foundation for Health Research https://healthresearchbc.ca/. SB: Scholar Grant [Grant #:17696] Michael Smith Foundation for Health Research https://healthresearchbc.ca/. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Medicine and Health Sciences
                Health Care
                Caregivers
                Medicine and Health Sciences
                Pharmacology
                Drugs
                Analgesics
                Opioids
                Medicine and Health Sciences
                Pain Management
                Analgesics
                Opioids
                Medicine and Health Sciences
                Pharmacology
                Drugs
                Opioids
                Engineering and Technology
                Technology Development
                Prototypes
                Research and Analysis Methods
                Research Design
                Survey Research
                Surveys
                Medicine and Health Sciences
                Medical Conditions
                Infectious Diseases
                Viral Diseases
                Covid 19
                Medicine and Health Sciences
                Health Care
                Health Care Policy
                Treatment Guidelines
                Medicine and Health Sciences
                Epidemiology
                Pandemics
                Social Sciences
                Sociology
                Education
                Workshops
                Custom metadata
                The datasets generated and/or analyzed during the current study are not publicly available due to the potential for identifying participants. Data are available upon request from Julia Langton, Director of Research, Evaluation and Data, Foundry Central Office, via email ( jlangton@ 123456foundrybc.ca ), for researchers who meet the criteria for access to confidential data.

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