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Rationale: The Knowledge Translation (KT) Programme of a pan‐Canadian strategic patient‐oriented research network focused on brain‐based developmental disabilities aimed to mobilize knowledge relevant to the network members. The programme also promotes and studies integrated Knowledge Translation (iKT) approaches involving different interested parties, such as researchers, patient‐partners and decision‐makers, in all parts of the knowledge creation process. Aims and Objectives: The objective of this study is to advance research programme evaluation methods through a realist evaluation of the process of implementing iKT activities. Methods: Realist process evaluation included: (1) development of initial programme theories (using the partnership synergy theory); (2) data collection and analysis; (3) synthesis and refinement of theories through engagement with literature; and (4) presentation of findings in context‐mechanism‐outcome (C‐M‐O) configurations. A range of project documentation records were reviewed for analysis, and three co‐leads, a programme coordinator, and a senior research associate were consulted to contextualize the implementation process of relevant KT activities. Results: Based on the developed C‐M‐O configurations, we identified five key mechanisms of generating synergy in the iKT processes: (1) Visible shared leadership that embodies what iKT looks like; (2) Researchers' readiness for iKT; (3) Adaptation and flexible allocation of resources to emerging needs; (4) Power sharing to create practical and creative knowledge; and (5) Collective voice for potential transformative impacts at the policy level. Conclusions: The current realist evaluation demonstrated how partnerships between researchers, patient‐partners and other interested parties can synergistically generate new ways of thinking among all interested parties, actionable strategies to integrate users in research, and solutions to disseminate knowledge. In particular, we identified a pivotal role for patient‐partners to act as equal decision‐maker helps building and maintaining partnerships and consolidating KT strategies. [ABSTRACT FROM AUTHOR]

Background: A growing body of research is addressing the process and science of engaging people with lived experience (PWLE) of mental health challenges and other psychiatric conditions, and family members, in research activities. Objective: This scoping review of reviews synthesizes literature reviews on the engagement of PWLE and family members in research across the field of psychiatry. Method: Systematic searches were conducted in seven bibliographic databases. Records were independently screened first at the title and abstract level, then at the full‐text level. Included were any literature synthesis studies published in English, French, or Spanish in any given year, focusing on the engagement of PWLE and/or family members in research within psychiatry. Twenty records were included. Data were extracted in a spreadsheet and codebook thematic analysis was used across the body of articles to synthesize the findings. Results: Aspects of PWLE engagement have been synthesized in 20 review articles reviewing 376 articles across psychiatry as a whole and several subpopulations, including youth mental health, dementia, neurodevelopmental disorders, people who use drugs, and forensic mental health. Information specific to family engagement is lacking. Barriers, facilitators, and positive impacts of PWLE engagement have been widely reported across domains of research, with a considerable degree of consensus across subpopulations. Some negative impacts and reporting challenges have also been identified. Discussion: This scoping review of reviews provides an overarching understanding of the current state of the science of PWLE and family engagement across psychiatry research. The findings can inform future research practices enriched with a genuine and effective engagement with PWLE and families. Patient or Public Contribution: The authorship team includes members with intersecting lived experience and academic identities. Additional lived experience engagement was not conducted as part of this review. [ABSTRACT FROM AUTHOR]

Background: Indiscriminate use of laboratory blood testing in hospitals contributes to patient discomfort and healthcare waste. Patient engagement in low‐value healthcare can help reduce overuse. Understanding patient experience is necessary to identify opportunities to improve patient engagement with in‐hospital laboratory testing. Objectives: To understand patient experience with the process of in‐hospital laboratory blood testing. Methods: We used a qualitative study design via semistructured interviews conducted online or over the phone. Participants were adult patients or family members/caregivers (≥18 years of age) with a recent (within 12 months of interview) experience of hospitalization in Alberta or British Columbia, Canada. We identified participants through convenience sampling and conducted interviews between May 2021 and June 2022. We analysed transcripts using thematic content analysis. Recruitment was continued until code saturation was reached. Results: We interviewed 16 participants (13 patients, 1 family member and 2 caregivers). We identified four themes from patients' experiences of in‐hospital laboratory blood testing: (i) patients need information from healthcare teams about expected blood testing processes, (ii) blood draw processes should consider patient comfort and preferences, (iii) patients want information from their healthcare teams about the rationale and frequency of blood testing and (iv) patients need information on how their testing results affect their medical care. Conclusion: Current laboratory testing processes in hospitals do not facilitate shared decision‐making and patient engagement. Patient engagement with laboratory testing in hospitals requires an empathetic healthcare team that provides clear communication regarding testing procedures, rationale and results, while considering patient preferences and offering opportunities for involvement. Patient or Public Contribution: We interviewed 16 patients and/or family members/caregivers regarding their in‐hospital laboratory blood testing experiences. Our findings show correlations between patient needs and patient recommendations to make testing processes more patient‐centred. To bring a lived‐experience lens to this study, we formed a Patient Advisory Council with 9–11 patient research partners. Our patient research partners informed the research design, co‐developed participant recruitment strategies, co‐conducted data collection and informed the data analysis. Some of our patient research partners are co‐authors of this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Although youth‐friendly service characteristics have been previously identified, consensus among a representative group of stakeholders about which of these characteristics are truly relevant to the youth‐friendliness of services is currently lacking. In our study, young adults, parents and professionals were consulted on this topic to reveal existing (dis)agreement. In addition, (dis)agreement on feasibility for implementation in clinical practice was also assessed. Methods: A mixed‐method Delphi approach was used with three online questionnaire rounds and a physical meeting. Young adults (18–26 years) and parents were part of a public panel and professionals were allocated to the professional panel. In the rounds, participants were asked to rate the importance and feasibility of each item. Subsequently, the percentage agreement (% of participants giving a score of 7 or above on a 9‐point Likert scale) within and across panels was calculated. Consensus was assumed to have been reached when at least 70% agreement was achieved. A thematic analysis of the qualitative data, obtained in the rounds and the physical meeting, was performed to identify overarching themes and characteristics of relevance to the youth‐friendliness of services. Results: For 65% of the items included in the Delphi questionnaire, consensus on importance was reached within both panels. Participants showed more insecurity about the feasibility of these items, however. Our thematic analysis revealed reasons for disagreement between and within the panels. Conclusions: Our study revealed substantial between‐ and within‐panel agreement on youth‐friendly service characteristics. We recommend that the items for which consensus was reached should be used as a checklist in terms of youth mental health service development, design and delivery. The characteristics for which there was disagreement between and within the panels should inspire an ongoing trialogue between young adults, parents and professionals both on the individual level and the service level. Patient or Public Contribution: In this study, (parents of) young adults with lived experience were included as experts, including one of the coauthors. This coauthor contributed to the manuscript by having a final say about the included quotes. [ABSTRACT FROM AUTHOR]

Background: A large proportion of youth with chronic conditions have mental health comorbidities. However, the effect of these comorbidities on paediatric–adult transition readiness, and the relevance of widely used tools for measuring transition readiness, are unknown. Objective: The objectives of this study were to describe and explore the transition readiness of youth with co‐occurring chronic health and mental health conditions using a combination of quantitative data obtained from participants completing the Transition Readiness Assessment Questionnaire (TRAQ) and qualitative data. Design and Participants: A three‐phase sequential explanatory mixed methods design was employed, with the qualitative strand taking priority. First, the TRAQ scores (range 1–5) of youth with co‐occurring conditions (n = 61) enroled in a multisite randomized controlled trial were measured, followed by qualitative interviews with a sample of youth (n = 9) to explain the quantitative results. Results from both strands were then integrated, yielding comprehensive insights. Results: Median TRAQ scores ranged from 2.86 on the appointment keeping subscale to 5.00 on the talking with providers subscale. The qualitative results uncovered the complexities faced by this group concerning the impact of a mental health comorbidity on transition readiness and self‐management skills across TRAQ domains. The integrated findings identified a diverse and highly individualized set of strengths and challenges amongst this group that did not align with overarching patterns as measured by the TRAQ. Conclusions: This mixed methods study generated novel understandings about how youth with co‐occurring conditions develop competencies related to self‐care, self‐advocacy and self‐management in preparation for paediatric–adult service transitions. Results demonstrated the assessment of transition readiness using a generic scale does not address the nuanced and complex needs of youth with co‐occurring chronic health and mental health conditions. Our findings suggest tailoring transition readiness practices for this group based on youths' own goals, symptoms, coping mechanisms and resources. Patient or Public Involvement: This study was conducted in collaboration with five young adult research partners (YARP) with lived experience transitioning from paediatric to adult health/mental health services. The YARP's contributions across study phases ensured the perspectives of young people were centred throughout data collection, analysis, interpretation and presentation of findings. All five YARP co‐authored this manuscript. [ABSTRACT FROM AUTHOR]

Background: There is growing evidence demonstrating the impact of engaging people with lived experience (PWLE) in health research. However, it remains unclear what evidence is available regarding the impact of engagement specific to mental health and substance use research. Methods: A scoping review of three databases and thematic analysis were conducted. Sixty‐one articles that described the impact of engagement in mental health and substance use research on either individual experiences or the research process were included. Results: Key topics include (a) the impact of engagement on individual experiences; (b) the impact of engagement on the research process; and (c) facilitators and barriers to impactful engagement. Studies largely focused on the perceived positive impact of engagement on PWLE (e.g., personal and professional growth, empowering and rewarding experience, feeling heard and valued), researchers (e.g., rewarding experience, deeper understanding of research topic, changes to practice), and study participants (e.g., added value, fostered a safe space). Engagement activities were perceived to improve facets of the research process, such as improvements to research quality (e.g., rigour, trustworthiness, relevance to the community), research components (e.g., recruitment), and the research environment (e.g., shifted power dynamics). Facilitators and barriers were mapped onto the lived experience, researcher, team, and institutional levels. Commonly used terminologies for engagement and PWLE were discussed. Conclusion: Engaging PWLE—from consultation to co‐creation throughout the research cycle—is perceived as having a positive impact on both the research process and individual experiences. Future research is needed to bring consistency to engagement, leverage the facilitators to engagement, and address the barriers, and in turn generate research findings that have value not only to the scientific community, but also to the people impacted by the science. Patient or Public Contribution: PWLE were engaged throughout the scoping review process, including the screening phase, analysis phase, and write‐up phase. [ABSTRACT FROM AUTHOR]

Introduction: Patient engagement in patient‐oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health research, asks that patients be included as partners early, often and at as many stages of the health research process as possible. The objective of this POR project was to co‐build an interactive, hands‐on training programme that could support PRPs in understanding the processes, logistics and roles of CIHR grant funding applications. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in co‐building the training programme. Methods: This multiphased POR study included a Working Group of seven PRPs with diverse health and health research experiences and two staff members from the Patient Engagement Team. Seven Working Group sessions were held over the 3‐month period from June to August 2021. The Working Group worked synchronously (meeting weekly online via Zoom) as well as asynchronously. A patient engagement evaluation was conducted after the conclusion of the Working Group sessions using a validated survey and semi‐structured interviews. Survey data were analysed descriptively and interview data were analysed thematically. Results: The Working Group co‐built and co‐delivered the training programme about the CIHR grant application process for PRPs and researchers in five webinars and workshops. For the evaluation of patient engagement within the Working Group, five out of seven PRPs completed the survey and four participated in interviews. From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together‐communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group. Conclusion: This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co‐build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application. Patient or Public Contribution: The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co‐build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co‐learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co‐building more PRP‐centred learning programmes and tools going forward. [ABSTRACT FROM AUTHOR]

The article contests the dependence of patient-oriented research (POR) on reductionistic quantitative evidence and argues for the inclusion of wholistic qualitative evidence in POR to deliver quality healthcare and remedy shiny object syndrome in western medicine. It provides information on the history of POR and raises the issue of evidence with respect to POR implementation into clinical practice. It discusses the postmodernist critique and autocratic approach of evidence-based practice.

Introduction: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can‐SOLVE CKD) is a pan‐Canadian health research network that engages patients as partners across 18 unique projects and core infrastructure. In this qualitative study, we explored how research teams integrated patient partners into network research activities to inform our patient engagement approach. Methods: To capture a breadth of perspectives, this qualitative descriptive study purposively sampled researchers and patient partners across 18 network research teams. We conducted 4 focus groups (2 patients and 2 researchers; n = 26) and 28 individual telephone interviews (n = 12 patient partners; n = 16 researchers). Transcripts were coded in duplicate, and themes were developed through an inductive, thematic analysis approach. Results: We included 24 patient partners and 24 researchers from 17 of the 18 projects and all core committees within the network. Overarching concepts relate participants' initial impressions and uncertainty about patient engagement to an evolving appreciation of its value, impact and sustainability. We identified four themes with subthemes that characterized the dynamic nature of patient engagement and how participants integrated patients across network initiatives: (1) Reinforcing a shared purpose (learning together, collective commitment, evolving attitudes); (2) Fostering a culture of responsive and innovative research (accessible supports, strengthened process and product); (3) Aligning priorities, goals and needs (amenability to patient involvement, mutually productive relationships, harmonizing expectations); (4) Building a path to sustainability (value creation, capacity building, sustaining knowledge use). Conclusions: Our findings demonstrate the dynamic and adaptive processes related to patient engagement within a national, patient‐oriented kidney health research network. Optimization of support structures and capacity are key factors to promote sustainability of engagement processes within and beyond the network. Patient or Public Contribution: This project was conceived in collaboration with a Can‐SOLVE CKD patient partner (N. F.), with lived experience of kidney failure. He also co‐designed the study′s protocol, led focus groups and researcher interviews, and contributed to data analysis. L. G. has lived experience as a caregiver for a person with CKD and facilitated patient partner focus groups. The patient partners, both of whom are listed authors, provided important insights that shaped our interpretation and presentation of study findings. [ABSTRACT FROM AUTHOR]

Within the last decade, stakeholder engagement in research has become increasingly popular in childhood disability research; however, literature on the engagement of youth with neurodisabilities and their families in evidence syntheses is underdeveloped. Involving patients as partners in research has the potential to improve applicability and relevance of the research and benefit patient partners (e.g. enhanced self‐esteem, increased research knowledge and skills); however, the methods, challenges, outcomes and recommendations of engaging youth with neurodisabilities and their families in evidence syntheses are unknown. Two parents of youth with complex disability needs were engaged as partners throughout this review. Following methods outlined by Arksey and O'Malley (2005), the primary research question in this scoping review is twofold: (i) what activities have youth with neurodisabilities and their families been engaged in as part of evidence syntheses and (ii) what were the outcomes of that engagement? After full text review of 369 articles, nine articles were included. Youth and families were engaged prior to the evidence synthesis and at every stage in the project, most often during data analysis where they contextualized the findings. Youth and family engagement were not formally evaluated; however, positive outcomes were reported by parents and researchers. Challenges such as increased time, sustaining engagement, and parents' dissatisfaction with their level of involvement were reported. Recommendations centred around providing partners with information, building relationships via social media, and openly communicating about roles, feedback and logistics. Childhood disability researchers should be aware of how they can increase engagement opportunities at all stages of evidence syntheses and how they might improve accessibility for youth with neurodisabilities and their families. Further research is needed to solidify a unified framework for conduct and reporting of youth and family engagement in evidence syntheses. [ABSTRACT FROM AUTHOR]

The authors talk about engaging people with lived experience (PWLE) of mental health challenges in health research. Topics include reason that mental health is a high priority area for engagement, key differences to be noted in engagement across physical health versus mental health, and language choices suggested in engagement activities.

Background: As part of a growing emphasis on engaging people with lived experience of mental health conditions in mental health research, there are increasing calls to consider and embed lived experience throughout academic research institutes. This extends beyond the engagement of lay patients and also considers the potential roles of academic researchers with lived experience. When the lived experience of academic researchers is applied to academic work, there is the potential to improve the relevance of the research, while destigmatizing mental illness within academia. However, there are different and often contrasting perspectives on the way a lived experience academic researcher initiative should be implemented. Objectives: This article describes some of the key issues to be considered when planning an initiative that leverages and values the lived experience of academic researchers, including the advantages and disadvantages of each potential approach. Discussion & Recommendations: Institutions are encouraged to reflect on the ways that they might support and value lived experience among academic researchers. In developing any such initiative, institutions are encouraged to be transparent about their objectives and values, undertake a careful planning process, involve researchers with lived experience from the outset and consistently challenge the stigma experienced by academic researchers with lived experience. Patient or Public Contribution: Multiple authors are academic researchers with lived experience of mental health conditions. [ABSTRACT FROM AUTHOR]

Background: Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. Aim: This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. Methods: Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi‐structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. Results: Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two‐way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. Conclusion: Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. Patient or Public Contribution: Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video. [ABSTRACT FROM AUTHOR]

Introduction: People who experience social disadvantage including homelessness suffer from numerous ill health effects when compared to the general public. Use of patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs) enables collection of information from the point of view of the person receiving care. Involvement in research and health care decision‐making, a process that can be facilitated by the use of PROMs and PREMs, is one way to promote equity in care. Methods: This article reports on a codevelopment and consultation study investigating the use of PROMs and PREMs with people who experience homelessness and chronic illness. Data were analysed according to interpretative phenomenological analysis. Results: Committee members with lived experience identified three themes for the role of PROMs and PREMs in health care measurement: trust and relationship‐building; health and quality of life; and equity, alongside specific recommendations for the design and administration of PROMs and PREMs. The codevelopment process is reported to demonstrate the meaningful investment in time, infrastructure and relationship‐building required for successful partnership between researchers and people with lived experience of homelessness. Conclusion: PROMs and PREMs can be meaningful measurement tools for people who experience social disadvantage, but can be alienating or reproduce inequity if they fail to capture complexity or rely on hidden assumptions of key concepts. Patient or Public Contribution: This study was conducted in active partnership between researchers and people with experience of homelessness and chronic illness, including priority setting for study design, data construction, analysis and coauthorship on this article. [ABSTRACT FROM AUTHOR]

Background: There are growing calls to engage service users in research about issues relevant to them. Youth and family members can make meaningful contributions to research projects, improving quality and relevance. However, more information is needed on the contributions that youth and family members can make to various study designs. Objective: This paper describes the contributions that youth and family members have made to a multi‐site pragmatic randomized‐controlled trial, YouthCan IMPACT, and the way project‐based engagement learnings accelerated change at the institutional level and beyond. Results: Youth and family members were full members of the project team, including the project's core governance and working groups. They contributed to project leadership, as funding co‐applicants and as equal members of the governance team. They were also engaged in study design. Youth defined the primary outcome measure and contributed to decisions on all secondary measures. The service pathway was co‐designed with youth and family members; for example, they guided the inclusion of peer support and a family member intervention as core service components. Study implementation contributions included ensuring a youth‐ and family‐friendly research process and training research staff on working with youth and family members. Knowledge translation activities have included youth and family members as co‐presenters and manuscript co‐authors. The learnings from this trial have been leveraged to expand youth and family engagement at the institution and beyond. Conclusions: Youth and family members make substantial contributions to complex research projects, including randomized‐controlled trials, thereby improving project design, study implementation, associated interventions, and knowledge translation. [ABSTRACT FROM AUTHOR]

Introduction: Engaging with patients about their lived experience of health and illness and their experience within the healthcare system can help inform the provision of care, health policies and health research. In the context of health research, however, operationalizing the levels of patient engagement is not straightforward. We suggest that a key challenge to the routine inclusion of patients as partners in health research is a lack of tangible guidance regarding how this can be accomplished. Methods: In this article, we provide guidance on how to codesign and operationalize a concrete patient engagement plan for any health research project. Results: We illustrate a seven‐step approach using the example of a national clinical trial in Canada and provide a patient engagement planning template for use in any health research project. Conclusion: Such concrete guidance should improve the design and reporting of patient engagement in health research. Patient or Public Contribution: The De‐Implementing Wisely Research group is informed by a national 9‐member patient partner council (PPC). The research team includes three lead patient partners who are coinvestigators on the grant that funds the program of research. Members of the council advise on all aspects of the study design and implementation. The ideas presented in this paper were informed by regular communication and planning with the PPC; specific contributions of lead patient partner authors are outlined as follows: Brian Johnston, Susan Goold and Vanessa Francis are patient partners with a wide breadth of experience in the healthcare system and health research projects. The guidance in this article draws on their lived and professional expertise. All patient partner authors contributed to the planning of the manuscript, participated in meetings to develop content and provided critical manuscript edits and comments on drafts. [ABSTRACT FROM AUTHOR]

Background: Mixed methods research studies continue to pervade the field of health care, where pragmatism as a research paradigm and patient‐oriented research (POR) as an engagement strategy are combined to strengthen the process and outcomes of the research. Pragmatists use the most appropriate research methods to address issues at hand, where complex social problems need multipronged approaches. As an emerging healthcare research strategy, POR actively engages individuals with lived experience across all stages of the research process. While POR continues to garner attention within mixed‐methods research designs, there is a paucity of literature that considers POR in relation to pragmatism. Objective: As POR grows in popularity within the field of health care, there is a need to explore the theoretical and epistemological alignment with pragmatism and the implications to research. Methods: To address this need, we provide a critical review of the literature to examine the synergies between POR and pragmatism, and argue for the adoption of pragmatism as a paradigm for conducting POR. Main Results: This article begins with a discussion of the philosophical underpinnings informing the pragmatic paradigm. It then identifies key alignments between POR and pragmatism across three intersecting concepts: democratic values, collaborative approaches to problem‐solving and the pursuit of social justice. Discussion and Conclusions: Reflecting on our experiences engaging with patient partners in a mixed‐methods POR study titled READY2Exit, we illustrate the relevance of pragmatism to POR by applying these concepts to practice. Implications and considerations for conducting POR within the pragmatic paradigm are also described. Patient or Public Contribution: This paper provides a critical review of the literature and did not directly involve patients or the public. The authors reflected on their experiences collaborating with five young adult patient partners in the READY2Exit study (case exemplar described in this article) to demonstrate the relevance of the pragmatic paradigm to POR. We acknowledge and thank the young adult patient partners for their contributions to the research, for encouraging us to think critically about patient engagement in research, and for sharing their experiences. [ABSTRACT FROM AUTHOR]

Objectives: There is growing policy impetus for including youth voices in health services research and health system reform. This article examines the perspectives of professionals in a mental healthcare organization charged with engaging young people as advisors in service transformation. Methods: An institutional ethnography of a youth mental health services organization in Ontario, Canada, was conducted. Fieldwork consisted of twelve months of observation of meetings, interviews with youth advisors and adult service providers, with subsequent text analysis of engagement training and policy materials. The present article reports data from six adult professionals and related field observations. Results: Service providers' efforts to engage youth were observed in three areas: a) supporting youth's development as advisors, b) retaining and deepening youth participation while waiting for organizational change and c) embedding relationships between youth and adults at various levels within the system of care. This work denotes existing tensions between the values and ideals of youth engagement and the everyday demands of services delivery. Conclusion: In this setting, a fundamental dimension of this work consisted of negotiating tensions between the policy enthusiasm for engagement and its realization in a health services context. In describing these contextual challenges, we outline implications for consideration by other youth mental health services. Engagement efforts that are authentic and sustained require resources and flexibility, and leadership commitment to instil service users' perspectives throughout multiple levels within the organization. [ABSTRACT FROM AUTHOR]

Background: In Canada, as is found globally, women of reproductive age are a growing demographic of persons living with HIV. Combination antiretroviral therapy (cART) treatment enables women living with HIV (WLWH) to become pregnant without perinatal transmission, and they are increasingly planning to become pregnant. Since 2014, Canadian guidelines no longer recommend routine elective cesarean birth (CB) for women who are virally suppressed and receiving cART. It is unknown whether their obstetric care has changed since this update. Our objective was to describe trends in cesarean births among WLWH in Ontario, Canada, over a 12‐year period. Methods: Our research is co‐led and codesigned with WLWH. We conducted a retrospective population‐level cohort study using linked health administrative databases at ICES (formally, the Institute for Clinical and Evaluative Sciences). Participants were all women who gave birth in Ontario, between 2006/07 and 2017/18. We assessed their intrapartum characteristics and used multivariable regression to determine an association between HIV status and CB, controlling for sociodemographic and clinical variables. Results: Since 2014, the overall proportion of CB among WLWH remained stable and was higher than among women without HIV (39.9% vs 29.0%, P < 0.001). In addition, the proportion of primary CB decreased between 2006 and 2010 and between 2014 and 2018 (28.5%‐19.3%), whereas the proportion of repeat CB increased (13.1%‐20.5%, P = 0.013). Conclusions: Because of decreasing HIV‐related indications for CB, more practitioners may be following the guidelines for first‐time mothers. Currently, no guidelines exist for care of WLWH with a previous CB, and opportunities for vaginal birth may be missed in this population. [ABSTRACT FROM AUTHOR]

Background: A growing literature describes promising practices for patient‐oriented research (POR) generally; however, those for systematic reviews are largely derived through the lens of a researcher. This rapid review sought to understand meaningful engagement in synthesis reviews from the patient partner (PP) perspective. Design: The review team comprised PPs, librarians, SCPOR staff and academic faculty. We searched OVID MEDLINE and EMBASE, ProQuest Nursing and Allied Health, and core POR websites. Documents describing PP reflections on their involvement in synthesis reviews were included. Screening and data extraction were conducted by two independent reviewers. Thematic analysis was employed to identify themes in the data regarding PP perceptions of engagement in synthesis reviews. Results: The literature search yielded 1386 citations. Eight journal articles and one blog post were included. Seven studies focused on conducting systematic reviews on a particular health or patient‐related topic to which PP involvement was an important part and two studies focused specifically on the experience of including PP in synthesis reviews. PPs engaged in the review process through a variety of mechanisms, levels and stages of the review process. Three major themes emerged from the data: (1) foster partnerships through team development, (2) provide opportunities for outcomes valued by PP and (3) strengthen the research endeavour. Conclusion: Fostering partnerships through team development is foundational for meaningful engagement in synthesis reviews. It requires sensitively balancing of various needs (eg overburdening with contributions). Meaningful involvement in reviews has both personal and research benefits. Patient Involvement: Patient partners were equal collaborators in all aspects of the review. [ABSTRACT FROM AUTHOR]

Objective: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. Methods: A prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. Results: 119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research. Conclusions: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. Patient or public contribution: A researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up. [ABSTRACT FROM AUTHOR]

Background: Engaging youth in research provides substantial benefits to research about youth‐related needs, concerns and interventions. However, researchers require training and capacity development to work in this manner. Methods: A capacity‐building intervention, INNOVATE Research, was co‐designed with youth and adult researchers and delivered to researchers in three major academic research institutions across Canada. Fifty‐seven attendees participated in this research project evaluating youth engagement practices, attitudes, perceived barriers, and perceived capacity development needs before attending the intervention and six months later. Results: The intervention attracted researchers across various career levels, roles and disciplines. Participants were highly satisfied with the workshop activities. Follow‐up assessments revealed significant increases in self‐efficacy six months after the workshop (P =.035). Among possible barriers to youth engagement, four barriers significantly declined at follow‐up. The barriers that decreased were largely related to practical knowledge about how to engage youth in research. Significantly more participants had integrated youth engagement into their teaching activities six months after the workshop compared to those who were doing so before the workshop (P =.007). A large proportion (71.9%) of participants expressed the need for a strengthened network of youth‐engaged researchers; other future capacity‐building approaches were also endorsed. Conclusions: The INNOVATE Research project provided improvements in youth engagement attitudes and practices among researchers, while lifting barriers. Future capacity‐building work should continue to enhance the capacity of researchers to engage youth in research. Researchers notably pointed to the need to establish a network of youth‐engaged researchers to provide ongoing, sustainable gains in youth engagement. [ABSTRACT FROM AUTHOR]

Objective: While public reporting of hospital‐based performance measurement is commonplace, it has lagged in the primary care sector, especially in Canada. Despite the increasing recognition of patients as active partners in the health‐care system, little is known about what information about primary care performance is relevant to the Canadian public. We explored patient perspectives and priorities for the public reporting of primary care performance measures. Methods: We conducted six deliberative dialogue sessions across three Canadian provinces (British Columbia, Ontario, Nova Scotia). Participants were asked to rank and discuss the importance of collecting and reporting on specific dimensions and indicators of primary care performance. We conducted a thematic analysis of the data. Results: Fifty‐six patients participated in the dialogue sessions. Measures of access to primary care providers, communication with providers and continuity of information across all providers involved in a patient's care were identified as the highest priority indicators of primary care performance from a patient perspective. Several common measures of quality of care, such as rates of cancer screening, were viewed as too patient dependent to be used to evaluate the health system or primary care provider's performance. Conclusions: Our findings suggest that public reporting aimed at patient audiences should focus on a nuanced measure of access, incorporation of context reported alongside measurement that is for public audiences, clear reporting on provider communication and a measure of information continuity. Participants highlighted the importance the public places on their providers staying up to date with advances in care. [ABSTRACT FROM AUTHOR]

Background: We launched a patient engagement strategy to facilitate research involvement of the retinoblastoma (childhood eye cancer) community in Canada. To inform our strategy, we aimed to uncover the experiences with retinoblastoma, knowledge of retinoblastoma and research engagement among retinoblastoma survivors and parents. Methods: Focus groups were held in Toronto and Calgary, including both in‐person and remote participants (via videoconference). Discussions centred on experience with retinoblastoma, knowledge of the disease and engagement with research. Focus group transcripts were evaluated by inductive thematic analysis. Results: Four focus groups (3 in Toronto, 1 in Calgary) were held with a collective total of 34 participants. Retinoblastoma had a substantial impact on the life of participants, but overall, patients reported being able to adapt and persevere. Experiential knowledge of retinoblastoma was identified as distinct from the theoretical knowledge held by their clinicians. Participants indicated they often acted as a knowledge broker, communicating information about the cancer to their social networks. Participants were willing to engage in research as partners, but recognized barriers such as time and appropriate training. Conclusions: Patients view their experiential knowledge of retinoblastoma as valuable to improving care and directing research. There is a unique role for research engagement in meeting the educational needs of patients. [ABSTRACT FROM AUTHOR]

Background: Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental, and psychological factors that are rarely captured by quantitative research alone. This qualitative study sought to explore the lived experience of young people with CP with their physical, mental, and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well‐being. Methods: An integrated research team (including people with CP or other impairments, clinicians, and researchers) was formed to study participant‐identified research needs. A purposive sample of 16 people with CP (seven female), aged 17–29, Gross Motor Function Classification System (GMFCS) levels I–V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology. Results: This study reports the experiences of people with CP across GMFCS levels and identifies some consequences of growing up with the condition: physical and mental health issues, importance of meaningful participation, impact of the environment, and identity formation. Participants shared challenges related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment. Discussion Body structure and function challenges impact participation in activities of daily living, threatening participants' ability to form positive identities and live meaningful lives. People with CP desire to work but may require additional training, accommodation, and support to do so. Environmental conditions, including relationships, supportive people, and accessibility, shape participants' health, well‐being, and social/civic engagement. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services. [ABSTRACT FROM AUTHOR]

Background: Patients and stakeholders are increasingly engaging in health research to help address evidence‐practice gaps and improve health‐care delivery. We previously engaged patients, caregivers, health‐care providers (HCPs) and policymakers in identifying priorities for chronic kidney disease (CKD) research. Objective: We aimed to explore participants' views on the research priorities and prioritization process 2 years after the exercise took place. Design: In this qualitative descriptive study, individual interviews were conducted and analysed using an inductive, thematic analysis approach. Setting/participants: Participants resided across Canada. We purposively sampled across stakeholder groups (CKD patients, caregivers, HCPs and policymakers) and types of engagement (wiki, workshop and/or steering committee) from the previous CKD priority‐setting project. Results: Across 23 interviews, participants discussed their research priorities over time, views on the prioritization process and perceived applicability of the priorities. Even though their individual priorities may have changed, participants remained in agreement overall with the previously identified priorities, and some perceived a distinction between patient and HCP priorities. They tended to balance individual priorities with their broader potential impact and viewed the prioritization process as systematic, collaborative and legitimate. However, participants acknowledged challenges to applying the priorities and emphasized the importance of communicating the project's outcomes upon its completion. Conclusion: Two years after engaging in CKD research prioritization, stakeholder participants remained in agreement with the previously identified priorities, which they felt reflected group deliberation and consensus. Rapport and communication were highlighted as key elements supporting effective engagement in research prioritization. [ABSTRACT FROM AUTHOR]

Abstract: Background: Diabetes is a chronic disease with increasing prevalence worldwide. Although research has improved its treatment and management, little is known about which research topics matter to people living with diabetes, particularly among under‐represented groups. Objectives: To explore the importance of research topics among a diverse range of people living with any type of diabetes or caring for someone living with any type of diabetes. Methods: We used a convergent mixed‐method design with quantitative and qualitative aspects. We surveyed a national sample of people living with diabetes and caregivers of people with diabetes, asking them to rate the importance of 10 predetermined important research topics. We also held three focus groups in two major cities to explore research concerns of people who are under‐represented in research. Results: 469 adults (57% men, 42% women) in Canada completed the online survey, indicating that all 10 areas of research mattered to them, with the highest ratings accorded to preventing and treating kidney, eye and nerve complications. Fourteen individuals participated in three focus groups and similarly noted the importance of research on those three complications. Additionally, focus group participants also noted the importance of research around daily management. No new topics were identified. Conclusions: This study confirmed the importance of research topics among a population of people living with or caring for someone with diabetes. Findings from this study were used to inform the vision for Diabetes Action Canada—a pan‐Canadian Strategy for Patient‐Oriented Research (SPOR) Network on diabetes and its complications. [ABSTRACT FROM AUTHOR]

Background Patient engagement in research ( PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. Objective To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective. Methods We conducted a qualitative secondary analysis of in-depth interviews with 18 patient research partners from a research centre-affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team. Results Participants' experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team. Conclusions The PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient-researcher partnerships are led by researchers with little experience of engaging patients in research. [ABSTRACT FROM AUTHOR]

Arthrogryposis multiplex congenita (AMC) is considered a rare disorder resulting in multiple congenital contractures in two or more areas. Considerable literature is available on managing the contractures during an affected child's development but little information is available to those managing these ongoing issues in adulthood. Due to the heterogeneity etiological factors and presentation of AMC, and the small sample sizes of previous studies, it has been difficult to generalize results to the adult population. This current study presents the several steps taken to create an international AMC database for adults to populate with their own data over time. The methods included a scoping review of the literature for valid and reliable outcome measures used for AMC, a Delphi methodology to create the database with a team of clinicians, researchers and patients, a Beta testing of the database, and a final launch of the Adult AMC Registry. This registry includes 48 nonstandardized questions and 12 standardized questionnaires. It takes 35-45 min for a participant to complete. A shorter version will be created for participants to complete for years 2 and 3, followed by this longer version every 4 years. The protocol for referring English-speaking patients and access to the registry is provided. Data will be reviewed every year to ensure quality. The registry will be maintained for a minimum of 10 years and data will be comprehensively analyzed every 5 years. Our goal is to have 500 adults with AMC from around the world as participants., (© 2019 Wiley Periodicals, Inc.)