Postsurgical Pain Risk Stratification to Enhance Pain Management Workflow in Adult Patients: Design, Implementation, and Pilot Evaluation.

BACKGROUND: Exposure to opioids after surgery is the initial contact for some people who develop chronic opioid use disorder. Hence, effective postoperative pain management, with less reliance on opioids, is critical. The Perioperative Opioid Quality Improvement (POQI) program developed (1) a digital health platform leveraging patient-survey-reported risk factors and (2) a postsurgical pain risk stratification algorithm to personalize perioperative care by integrating several commercially available digital health solutions into a combined platform. Development was reduced in scope by the COVID-19 pandemic. OBJECTIVE: This pilot study aims to assess the screening performance of the risk algorithm, quantify the use of the POQI platform, and evaluate clinicians' and patients' perceptions of its utility and benefit. METHODS: A POQI platform prototype was implemented in a quality improvement initiative at a Canadian tertiary care center and evaluated from January to September 2022. After surgical booking, a preliminary risk stratification algorithm was applied to health history questionnaire responses. The estimated risk guided the patient assignment to a care pathway based on low or high risk for persistent pain and opioid use. Demographic, procedural, and medication administration data were extracted retrospectively from the electronic medical record. Postoperative inpatient opioid use of >90 morphine milligram equivalents per day was the outcome used to assess algorithm performance. Data were summarized and compared between the low- and high-risk groups. POQI use was assessed by completed surveys on postoperative days 7, 14, 30, 60, 90, and 120. Semistructured patient and clinician interviews provided qualitative feedback on the platform. RESULTS: Overall, 276 eligible patients were admitted for colorectal procedures. The risk algorithm stratified 203 (73.6%) as the low-risk group and 73 (26.4%) as the high-risk group. Among the 214 (77.5%) patients with available data, high-risk patients were younger than low-risk patients (age: median 53, IQR 40-65 years, vs median 59, IQR 49-69 years, median difference five years, 95% CI 1-9; P=.02) and were more often female patients (45/73, 62% vs 80/203, 39.4%; odds ratio 2.5, 95% CI 1.4-4.5; P=.002). The risk stratification was reasonably specific (true negative rate=144/200, 72%) but not sensitive (true positive rate=10/31, 32%). Only 39.7% (85/214) patients completed any postoperative quality of recovery questionnaires (only 14, 6.5% patients beyond 60 days after surgery), and 22.9% (49/214) completed a postdischarge medication survey. Interviewed participants welcomed the initiative but noted usability issues and poor platform education. CONCLUSIONS: An initial POQI platform prototype was deployed operationally; the risk algorithm had reasonable specificity but poor sensitivity. There was a significant loss to follow-up in postdischarge survey completion. Clinicians and patients appreciated the potential impact of preemptively addressing opioid exposure but expressed shortcomings in the platform's design and implementation. Iterative platform redesign with additional features and reevaluation are required before broader implementation.

Storytelling of Indigenous patient and family advocates engaged in patient-oriented research initiatives in the field of inflammatory bowel disease.

Background and aim: The history of colonization and its ongoing impact poses significant health disparities among Indigenous communities. We aimed to centre the voices and stories of Indigenous patients and family advocates (IPFAs-Indigenous patients living with inflammatory bowel disease [IBD] and family members of Indigenous individuals with IBD) engaged in patient-oriented research projects and who are part of the IBD among Indigenous Peoples Research Team (IBD-IPRT). Methods: IPFAs and Indigenous and non-Indigenous researchers of the IBD-IPRT followed a storytelling research methodology to let IPFAs share their stories as research team members. Four IPFAs documented their experiences as IBD patients, advocates, and research partners. The stories were analyzed for themes. The identified themes were collaboratively verified with the IPFAs. Results: The full stories shared by the IPFAs were transcribed and presented in this paper. Following a background analysis of themes in the 4 narratives, we were also able to identify 4 key themes that could be relevant to improving patient-oriented research initiatives: (1) health promotion, (2) leadership and voice, (3) community engagement, and (4) disease awareness and access to care. Trust building, strong relationships, and effective partnerships are core components for conducting patient-oriented research with Indigenous community members. Conclusions: Indigenous patient engagement in health research is crucial to ensure that lived experiences, knowledge, and cultural values are adequately adopted to improve research outcomes. Centering IPFAs in IBD research can promote cultural awareness and actionable recommendations to improve health outcomes for individuals with IBD and their families and caregivers.

Key ingredients for successful collaboration in health research: perspectives of patient research partners.

BACKGROUND: There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative research study. MAIN BODY: We were part of a study team that comprised of PRPs, clinicians and academic researchers, and was led by a PRP. The team designed and conducted a qualitative study aimed at understanding how patients make decisions around tapering of biologics for inflammatory bowel disease. The study was conducted online. The PRP lead was trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had received patient-oriented research training and qualitative research training prior to this project. Team members were assigned tasks by our group lead based on member interests and willingness. Some group members were part of the Strategy for Patient-Oriented Research, Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects Network, one of five chronic disease networks in the Strategy for Patient Oriented Research initiative of the Canadian Institutes of Health Research. We describe the five key ingredients to successful collaboration based on our experiences and reflections utilizing the Experience-Reflection-Action Cycle as our framework. The five key ingredients that we identified were: inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead. CONCLUSION: Overall, our experience was positive. With successful collaboration came an increased level of trust, commitment and performance. There is a need for more studies with diverse PRPs in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research.

Realist process evaluation of the knowledge translation programme of a patient-oriented research network.

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.

Primus Inter PARES: First among equals-practical strategies for young adult PAtient RESearch partners (PARES) by young adult PARES.

BACKGROUND: This manuscript is coauthored by 15 young adult Patient RESearch partners (PARES) with lived and living mental health experiences and three institutional researchers across Canada involved in a patient-oriented research (POR) study called the HEARTS Study: Helping Enable Access and Remove Barriers To Support for Young Adults with Mental Health-Related Disabilities. We share our reflections, experiences and lessons learned as we grapple with the field of POR for its lack of clarity, hierarchical structures, internalized ableism, and accessibility challenges, among others. To mitigate the difficulties of POR, we started by laying the groundwork for equality by embracing the principle of Primus Inter Pares: First Among Equals as the foundation of our approach. In this way, we began with what we know for certain: the inherent worth and dignity of young adults as equal partners, recognizing their expertise, worldviews, creativity, and capacity to contribute meaningfully and intentionally to the research that affects their lives and futures. MAIN BODY: The manuscript underscores the need to reconceptualize meaningful engagement in POR, advocating a shift from traditional, biased paradigms that fail to address the complexities faced by young adults with mental illness. It introduces what we have termed Adaptive and Differential Engagement, underscoring the necessity of tailoring participation to individual preferences and circumstances alongside a Tripartite Compensation model that promotes fair and holistic remuneration in research collaborations. Then we discuss the approaches we have conceptualized, such as Equitable Dialogue, Trust Architecture, Community Continuum, Unity in Diversity, Shared Stewardship, and Agile Frameworks that collectively aim to overcome barriers like language intimidation, power imbalances, framework fatigue, consultation burnout, trust deficits, and systemic discrimination and exclusion. The manuscript does not seek to prescribe any universal or standardized solutions; in fact, it seeks the opposite. Instead, it offers a thoughtful and transparent contribution to the POR canon, providing resources for young adults eager to engage in research and institutional researchers aspiring to collaborate with them. CONCLUSION: This manuscript is a product of our collective learning and critical self-evaluation. By integrating theoretical insights with practical strategies, we present a justice-oriented blueprint for an inclusive and egalitarian approach to POR. We advocate for applications of POR that are responsive to the individualized contexts of young adult PARES, ensuring their perspectives are central to the research with the resources to take the lead should they choose.

Together with a graduate student, co-supervisors, and 15 young people from across Canada who have experience with mental health challenges, this paper looks at how research involving young adults as patient research partners can be better. We feel that the types of research that are supposed to include us are often not clear enough and make it hard to join, especially those with unique life situations and health issues. So, in this paper, we suggest a few new ways of doing things where everyone is treated equally. We call it Primus Inter PARES: First Among Equals. This means young people are just as important as anyone else in research.We want to change the old ways that do not consider our unique experiences as young people with mental health issues. We came up with new ideas like 'Equitable Dialogue' and 'Trust Architecture' to ensure everyone understands the research and feels that they can trust the process. We also suggest ways to make sure different voices are heard and that everyone has a fair chance to contribute.We do not just offer a one-size-fits-all solution; instead, we share many ways to improve research to help young adults who want to be part of research and for the researchers who want to work with us. Our paper is about making research fair and including everyone's point of view. We hope this will make the research better for everyone, especially for young adults.

Patshitinikutau Natukunisha Tshishennuat Uitshuau (a place for Elders to spend their last days in life): a qualitative study about Innu perspectives on end-of-life care.

BACKGROUND: Indigenous palliative persons and their families often have different values, spiritual traditions, and practices from Western culture and Canadian health systems. Additionally, many healthcare policies and practices have been established without adequate consultation of the Indigenous populations they are meant to serve. This can result in barriers to Innu receiving culturally safe end-of-life care. Innu community leaders from Sheshatshiu, Labrador, have identified a need for further research in this area. The purpose of this study is to: (1) describe the cultural and spiritual practices related to death and dying of the Innu in Sheshatshiu; (2) identify aspects of current end-of-life care delivery that serve and/or fail to meet the cultural and spiritual needs of the Innu in Sheshatshiu; and (3) explore ways to integrate current end-of-life care delivery practices with Innu cultural and spiritual practices to achieve culturally safer care delivery for the Innu. METHODS: This qualitative patient-oriented research study was co-led by Innu investigators and an Innu advisory committee to conduct semi-structured interviews of 5 healthcare providers and 6 decision-makers serving the community of Sheshatshiu and a focus group of 5 Innu Elders in Sheshatshiu. Data was analyzed thematically from verbatim transcripts. The codebook, preliminary themes, and final themes were all reviewed by Innu community members, and any further input from them was then incorporated. Quotations in this article are attributed to Innu Elders by name at the Elders' request. RESULTS: The findings are described using eight themes, which describe the following: relationships and visitation support a "peaceful death"; traditional locations of death and dying; the important role of friends and community in providing care; flexibility and communication regarding cultural practices; adequate and appropriate supports and services; culturally-informed policies and leadership; and Innu care providers and patient navigators. CONCLUSIONS: The Innu in Sheshatshiu have a rich culture that contributes to the health, care, and overall well-being of Innu people approaching end of life. Western medicine is often beneficial in the care that it provides; however, it becomes culturally unsafe when it fails to take Innu cultural and spiritual knowledge and traditions into account.

"Now I Am Walking Toward Health": A Qualitative Study About the Outcomes of Physical Activity Participation That Matter to Older Adults.

BACKGROUND/OBJECTIVES: Randomized controlled trials that deliver physical activity interventions have demonstrated benefits for older adults across numerous health outcomes. However, too little attention has been directed to ensuring that such trials are measuring patient-relevant outcomes. To support outcome selection for future trials, the objective of this study was to understand what outcomes related to their physical activity participation older adults find important. METHODS: We conducted 12 semistructured interviews with adults aged 65 years and older and analyzed interview transcripts with a reflexive thematic analysis. RESULTS: Older adults desired diverse outcomes from their physical activity participation, ranging from generic (e.g., quality of life) to specific (e.g., leg strength). Relevant outcomes were classified under five themes: physical, clinical, social, psychological, and overarching, each with respective subthemes. CONCLUSIONS: The outcomes that older adults found important were plentiful and rooted in a desire to improve their quality of life. Some of the outcome themes have been reported frequently in past trials (e.g., physical), but others have not (e.g., social). Future researchers should be aware of, and responsive to, the priorities of older adults when designing trials and defining outcomes. Significance/Implications: This study will help to improve outcome selection for future trials of physical activity with older adults. In alignment with a patient-oriented research philosophy, this study will also ground future outcome selection in the priorities of older adults.

Lived experience and family engagement in psychiatry research: A scoping review of reviews.

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.

The Promise and Challenges of Practice-Oriented Research: A Commentary on the Special Issue.

At the centre of POR is the concept of collaboration between patients, therapists, agencies, and third-party payers. For this commentary, I review the articles of the special issue with attention to both the opportunities and challenges offered by practice-oriented research (POR). I also reviewed some previous research on practice-research networks and how that research might inform POR. The use of routine outcome monitoring (ROM), artificial intelligence (AI), and program evaluation (PE) models show promise for advancing POR. However, each comes with its challenges. The use of ROM to improve patient outcomes has research support. However, researchers have identified problems with implementing ROM because of low uptake by clinicians and because clinicians may see ROM as a potential intrusion. AI shows promise to improve patient outcomes by potentially providing therapists with immediate and nuanced data to inform interventions and interpersonal stances specific to each patient. However, the scaling up of AI runs the risk of dehumanizing psychological interventions. PE may provide a context for allowing therapists to engage in POR to address real-world processes and outcomes of mental health interventions. However, like ROM PE faces the challenge of trust among clinicians and patients who may be reluctant to participate. Despite these challenges, and because of efforts to nurture and maintain respectful collaborations, articles in this special issue highlight how POR can play a pivotal role in bridging the gap between theory and practice.

Grappling With the Inclusion of Patients and the Public in Consensus Building: A Commentary on Inclusion, Safety, and Accessibility; Comment on "Evaluating Public Participation in a Deliberative Dialogue: A Single Case Study".

Deliberative dialogue (DD) may be relatively new in health research but has a rich history in fostering public engagement in political issues. Dialogic approaches are future-facing, comprising structured discussions and consensus building activities geared to the collective identification of actionable and contextualized solutions. Relying heavily on a need for coproduction and shared leadership, these approaches seek to garner meaningful collaborations between researchers and knowledge users, such as healthcare providers, decision-makers, patients, and the public. In this commentary, we explore some of the challenges, successes, and opportunities arising from public engagement in DD, drawing also upon insights gleaned from our own research, along with the case study presented by Scurr and colleagues. Specifically, we seek to expand discussions related to inclusion, power, and accessibility in DD, highlight the need for scholarship that addresses the epistemic, methodological, and practical aspects of patient and public engagement within dialogic methods, and identify promising practices.

Patient-important upper gastrointestinal bleeding in the ICU: A mixed-methods study of patient and family perspectives.

INTRODUCTION: The objective of this study was to create a definition of patient-important upper gastrointestinal bleeding during critical illness as an outcome for a randomized trial. DESIGN: This was a sequential mixed-methods qualitative-dominant multi-center study with an instrument-building aim. In semi-structured individual interviews or focus groups we elicited views from survivors of critical illness and family members of patients in the intensive care unit (ICU) regarding which features indicate important gastrointestinal bleeding. Quantitative demographic characteristics were collected. We analyzed qualitative data using inductive content analysis to develop a definition for patient-important upper gastrointestinal bleeding. SETTING: Canada and the United States. PARTICIPANTS: 51 ICU survivors and family members of ICU patients. RESULTS: Participants considered gastrointestinal bleeding to be important if it resulted in death, disability, or prolonged hospitalization. The following also signaled patient-important upper gastrointestinal bleeding: blood transfusion, vasopressors, endoscopy, CT-angiography, or surgery. Whether an intervention evinced concern depended on its effectiveness, side-effects, invasiveness and accessibility; contextual influences included participant familiarity and knowledge of interventions and trust in the clinical team. CONCLUSIONS: Survivors of critical illness and family members described patient-important upper gastrointestinal bleeding differently than current definitions of clinically-important upper gastrointestinal bleeding.

Codéveloppement d'un programme d'autogestion de la douleur chronique en ligne: un projet de recherche basé sur la conception et axé sur l'engagement des patients.

Introduction: L'autogestion est une approche privilégiée pour gérer la douleur chronique. Jusqu'à tout récemment, aucun programme d'autogestion en français, en ligne et codéveloppé avec des patients partenaires atteints de douleur n'était accessible gratuitement. Pourtant, la littérature pointe vers l'inclusion de ces partenaires aux équipes de développement, permettant une meilleure considération de leurs besoins et préférences. Objectif: Cette étude visait le codéveloppement d'un tel programme d'autogestion de la douleur chronique, réalisable sans le soutien d'un professionnel de la santé. Méthode: La démarche s'inscrit dans la recherche basée sur la conception et est réalisée dans le cadre d'un partenariat étroit entre chercheurs, partenaires atteints de douleur chronique, professionnels de la santé, étudiants en médecine et graphiste. Nous avons principalement basé le contenu du programme sur une revue systématique de la littérature, des guides de pratique, l'expérience clinique et l'expertise expérientielle des patients. Le codéveloppement a été réalisé en plusieurs cycles itératifs, dont trois mises à l'essai. Résultats: Grâce à l'apport des parties prenantes, nous avons codéveloppé le programme « Agir pour moi ¼. L'identité du programme, son contenu, sa structure et les modalités d'apprentissage proposées soutiennent pas à pas le développement de compétences et l'application de stratégies d'autogestion par soi-même. Ces démarches sont favorisées par l'intégration de témoignages positifs, d'un contenu empreint de bienveillance et d'une utilisation accrue de techniques de changement de comportement. Conclusion: L'approche de recherche choisie a permis de créer un environnement d'apprentissage jugé bienveillant, susceptible de soutenir le sentiment d'auto-efficacité et la motivation.

Satisfaction, engagement, and outcomes in internet-delivered cognitive behaviour therapy adapted for people of diverse ethnocultural groups: an observational trial with benchmarking.

Introduction: Depression and anxiety are the most common mental health disorders worldwide. Internet-Delivered Cognitive Behaviour Therapy (ICBT) can reduce barriers to care to broad cross sections of the population. However, People of Diverse Ethnocultural Backgrounds (PDEGs) other than White/Caucasian underutilize mental health services and are under represented in clinical trials of psychological interventions. Methods: To address this research gap we adapted an evidence-based ICBT program for PDEGs. The current pilot study explores the engagement, satisfaction, and effectiveness in the adapted ICBT program by PDEGs (N=41) when benchmarked against a sample of PDEGs (N=134) who previously completed a non-adapted version of the ICBT program. Results: An intent-to-treat analyses showed that the adapted ICBT program is effective in reducing anxiety and depression symptoms among PDEGs. Large within-group pre-to post-treatment Cohen's effect sizes of d = 1.23, 95% CI [0.68, 1.77] and d = 1.24, 95% CI [0.69, 1.79] were found for depression and anxiety, respectively. Further, 81.8% of the PDEGs who received the adapted ICBT reported overall satisfaction, 90.9% reported increased confidence in managing symptoms, and 70.7% completed majority of the psychoeducational lessons in the ICBT program. Conclusion: No statistically significant differences in the clinical outcomes, engagement, and satisfaction were found between the pilot study and benchmark sample. Future directions for ICBT research with PDEGs are described. Clinical trial registration: https://beta.clinicaltrials.gov/study/NCT05523492, identifier NCT05523492.

Engaging critically: exploring the varying roles of lived experience advisors in an implementation science study on management of opioid prescribing.

Involvement of individuals with lived experience, also called "patient partners", is a key element within implementation science, the study of how to put evidence into practice. While conducting a 4-year implementation study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). LEAs were involved throughout the study, including developing patient-facing recruitment material, informing the analysis of results, and as a regular reminder of the real-world impact of this work. However, through regular critical reflection, we acknowledged that we were still uncertain how to articulate the impact of LEA involvement. As a team, we continually discussed why and how people with lived experience were involved in this study. We probed ill-defined concepts such as "patient perspective", which was particularly complex for a study focused on changing physician behaviour with indirect impact on patients. This critical reflection strengthened trust and rapport between team members (characteristics deemed essential to meaningful patient involvement), while underscoring the value of including concerted time to explore the muddier aspects of engagement. In short, patient engagement did not proceed as smoothly as planned. We advocate that "best practices" in the engagement of people with lived experience include regularly setting aside time outside of practical study tasks to interrogate complex aspects of patient engagement, including reflecting on how and why individuals with lived experience are involved.

Involvement of individuals with lived experience, also called "patient partners", is often a required element of applied research. Although there is a lot of guidance on how to engage individuals with lived experience, there is no single best-practice that always applies. Each team is different and must adapt to meet the needs of their study and team. While conducting a 4-year study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). The LEAs were involved in developing patient-facing recruitment material, informing the analysis of results, and were a regular reminder of the real-world impact of this work. As a team, we continually discussed why and how individuals with lived experience were involved in this study and probed concepts such as "patient perspective", which is complex in a study focused on changing physician behaviour. Setting aside time to not just work on a task but to critically reflect and ask questions led to new insights into why and how we do this work. For example, one of the patient handouts that was co-designed with patients and praised by some physicians we interviewed, was found by LEAs to be objectifying and lacking nuance, which further highlighted how the same material can be received in different ways. Our discussions also helped build trust and rapport, which are characteristics deemed essential to meaningful patient involvement. We advocate for study teams to dedicate time to interrogate the less straightforward aspects of patient engagement. In other words - "embrace the messiness".

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.

BACKGROUND: While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15-17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. MAIN BODY: This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a "critical turning point," that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. CONCLUSIONS: We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.

Women's Self-Management of Dyspareunia Associated With Endometriosis: A Qualitative Study.

Given the limitations of medical treatment for endometriosis, self-management is a critical component of symptom management, and providing patients with information and education is a necessary complement to medical interventions. Though 50 to 70% of people with endometriosis experience dyspareunia (painful sex), there is limited knowledge of self-management specific to painful sex. A comprehensive understanding of the self-management strategies used is foundational to developing supportive care interventions that help ease pain and related psychosocial sequelae. The objective was to describe people's experiences of navigating endometriosis-associated painful sex and developing self-management strategies. We analyzed interview data from 20 women using constant comparative and thematic analysis techniques, guided by qualitative interpretive description methodology. Participants (age range 18-44 years) all identified as women and were predominately Caucasian (90%) and heterosexual (80%). Throughout their lives, the women appeared to gradually develop self-management strategies while navigating painful sexual experiences. This complex journey encompassed four phases: 1) viewing painful sex as normal, 2) experiencing evolving thoughts and emotions, 3) coming to understand painful sex and seeking help, and 4) learning strategies to navigate painful sex, these include preparing mentally and physically for sex and communicating with intimate partner(s). Women in this study developed self-management strategies over time through engagement with others who understood their challenges. Future research is warranted regarding initiatives to counter the normalization of painful sex, develop and disseminate patient-facing information, provide education specific to dyspareunia, improve access to multidisciplinary care, facilitate social connections and support, and enhance communication with intimate partners. PERSPECTIVE: In this paper, we report on the experiences of women with endometriosis-associated painful sex and their self-management strategies. Clinicians may be interested in a qualitative exploration of endometriosis-associated painful sex as they seek to further understand their patient's experiences and what strategies can be implemented to alleviate dyspareunia. DATA AVAILABILITY: The data sets generated during and/or analyzed during the current study are not publicly available as participants did not consent to making their data publicly available but are available from the corresponding author on reasonable request.

Protocol for co-producing a framework and integrated resource platform for engaging patients in laboratory-based research.

BACKGROUND: Patient engagement in research is the meaningful and collaborative interaction between patients and researchers throughout the research process. Patient engagement can help to ensure patient-oriented values and perspectives are incorporated into the development, conduct, and dissemination of research. While patient engagement is increasingly prevalent in clinical research, it remains relatively unrealized in preclinical laboratory research. This may reflect the nature of preclinical research, in which routine interactions or engagement with patients may be less common. Our team of patient partners and researchers has previously identified few published examples of patient engagement in preclinical laboratory research, as well as a paucity of guidance on this topic. Here we propose the development of a process framework to facilitate patient engagement in preclinical laboratory research. METHODS: Our team, inclusive of researchers and patient partners, will develop a comprehensive, empirically-derived, and stakeholder-informed process framework for 'patient engagement in preclinical laboratory research.' First, our team will create a 'deliberative knowledge space' to conduct semi-structured discussions that will inform a draft framework for preclinical patient engagement. Over the course of several sessions, we will identify actions, activities, barriers, and enablers (e.g. considerations and motivations for patient engagement in preclinical laboratory research, define roles of key players). The resulting draft process framework will be further populated with examples and refined through an international consensus-building Delphi survey with patients, researchers, and other collaborator organizations. We will then conduct pilot field tests to evaluate the framework with preclinical laboratory research groups paired with patient partners. These results will be used to create a refined framework enriched with real-world examples and considerations. All resources developed will be made available through an online repository. DISCUSSION: Our proposed process framework will provide guidance, best practices, and standardized procedures to promote patient engagement in preclinical laboratory research. Supporting and facilitating patient engagement in this setting presents an exciting new opportunity to help realize the important impact that patients can make.

Engaging patients as partners or collaborators in clinical research is becoming more common, but it is still new in preclinical research. Preclinical researchers work in laboratories on cell and animal experiments. They traditionally don't have frequent interactions with patients compared to their clinical research colleagues. Integrating patient engagement in preclinical laboratory research may help ensure that patient perspectives and values are considered. To help preclinical laboratory research align with patient-centred priorities we propose the development of a practical framework. This framework will facilitate patient engagement in preclinical laboratory research. To achieve this, we will first hold in-depth discussions with patient partners, researchers, and other collaborators to understand views on patient engagement in preclinical laboratory research. Together, we will identify key considerations to draft a framework, including motivations for patient engagement in preclinical laboratory research, and defining the roles of those who need to be involved. We will refine the framework through an international survey where we will collect feedback from researchers, patient partners, and other collaborators to make further improvements. The framework will then be tested and refined by preclinical laboratory teams inclusive of patient partners. The finalized framework and other resources to facilitate patient engagement in preclinical laboratory research will be hosted in a 'one-stop-shop' of online resources. Ultimately, this framework will enable partnerships between patients and researchers and provide a roadmap for patient engagement in preclinical laboratory research. This presents an exciting new opportunity for patients and researchers to collaborate and potentially improve translation of laboratory-based research.

Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers.

BACKGROUND: Patient engagement in research (also commonly referred to as patient or patient and public involvement in research) strives to transform health research wherein patients (including caregivers and the public) are regularly and actively engaged as multidisciplinary research team members (i.e. patient partners) working jointly towards improved health outcomes and an enhanced healthcare system. To support its mindful evolution into a staple of health research, this participatory study aimed to identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature. METHODS: The study met its aim through a multi-meeting pan-Canadian virtual workshop. Participants (n = 30) included Strategy for Patient-Oriented Research-funded academic researchers and patient partners identified through a publicly available database, personal and professional networks and social media. All spoke English, could access the workshop virtually, and provided written informed consent. The workshop was composed of four, 1.5-3-h virtual meetings wherein participants discussed the current and preferred future states of Canadian patient engagement in research. Workshop discussions (i.e. data) were video and audio recorded. Themes were generated through an iterative process of inductive thematic analysis that occurred concurrently with the multi-week workshop. RESULTS: Our participatory and iterative process identified 10 targetable areas of focus for the future of Canadian patient engagement in research. Five were categorized as system-level (systemic integration; academic culture; engagement networks; funding models; compensation models), one as researcher-level (engagement processes), and four crossed both levels (awareness; diversity and recruitment; training, tools and education; evaluation and impact). System level targetable areas called for reshaping the patient engagement ecosystem to create a legitimized and supportive space for patient engagement to be a staple component of a learning health system. Researcher level targetable areas called for academic researchers and patient partners to collaboratively generate evidence and apply knowledge to inform values and behaviours necessary to foster and sustain supportive health research spaces that are accessible to all. CONCLUSIONS: Future directions for Canadian patient engagement in research span 10 interconnected targetable areas that require strong leadership and joint action between patient partners, academic researchers, and health and research institutions if patient engagement is to become a ubiquitous component of a learning health system.

Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities.

BACKGROUND: Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include them meaningfully and authentically in the work. KNOWLEDGE MOBILIZATION EVENTS: After reviewing the literature on the science of lived experience engagement, we held two knowledge mobilization events to translate the findings to relevant partners and collect their feedback to guide our future research. A total of 55 people attended, bringing the perspective of people with lived experience, family members, research staff, research trainees, and scientists, as well as attendees holding multiple roles. We presented the scoping review findings, then held discussions to solicit feedback and encourage the sharing of perspectives. ATTENDEE PERSPECTIVES: Through small and large group discussion activities, we found that our scoping review findings resonated with the attendees' personal experiences with engagement in mental health and substance use research. Among the gaps highlighted in the discussions, the two that were most emphasized were the critical importance of improving diversity in engagement work in mental health and substance use, and the importance of addressing gaps around communication, relationships, rapport, and power dynamics in engagement spaces. CONCLUSIONS: Diversity, communication, relationships, and power dynamics emerge as key areas of work needed in the near future to advance the science of PWLE engagement in mental health and substance use research. We commit to pursuing the work that is considered of greatest need by a range of partners this research engagement sphere. We call on researchers in this area to continue this line of work, with a focus on the areas of research identified by attendees.

Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves research, but it can be challenging to do it right. We reviewed the scientific research on engaging people with lived experience in this area of research. Next, we held two community events to share our findings and brainstorm on next steps. A total of 55 people attended. They were people with lived experience, family members, research staff, research trainees, and scientists, as well as people coming from multiple perspectives. Through small and large group discussions, attendees talked about the findings and the next steps. As a whole, attendees recognized the importance of this area of work and largely agreed with the findings we presented. Among all of the material discussed, attendees emphasized 1) the importance of improving diversity in PWLE engagement, and 2) the importance of improving communication, relationships, rapport, and power dynamics. These two key issues are considered among the most important areas of work going forward to advance the science of PWLE engagement in mental health and substance use research. We commit to pursuing the work that is considered of greatest need and call on researchers in this area to continue this line of work, with a focus on the areas of research identified by attendees.