Evolution of community outreach and engagement at National Cancer Institute-Designated Cancer Centers, an evolving journey.

Cancer mortality rates have declined during the last 28 years, but that process is not equitably shared. Disparities in cancer outcomes by race, ethnicity, socioeconomic status, sexual orientation and gender identity, and geographic location persist across the cancer care continuum. Consequently, community outreach and engagement (COE) efforts within National Cancer Institute-Designated Cancer Center (NCI-DCC) catchment areas have intensified during the last 10 years as has the emphasis on COE and catchment areas in NCI's Cancer Center Support Grant applications. This review article attempts to provide a historic perspective of COE within NCI-DCCs. Improving COE has long been an important initiative for the NCI, but it was not until 2012 and 2016 that NCI-DCCs were required to define their catchment areas rigorously and to provide specific descriptions of COE interventions, respectively. NCI-DCCs had previously lacked adequate focus on the inclusion of historically marginalized patients in cancer innovation efforts. Integrating COE efforts throughout the research and operational aspects of the cancer centers, at both the patient and community levels, will expand the footprint of COE efforts within NCI-DCCs. Achieving this change requires sustained commitment by the centers to adjust their activities and improve access and outcomes for historically marginalized communities.

Engagement and return of results preferences among a primarily African American genomic sequencing research cohort.

Genomics researchers are increasingly interested in what constitutes effective engagement of individuals from underrepresented groups. This is critical for longitudinal projects needed to inform the implementation of precision medicine. Return of results is one opportunity for engagement. The aims of this study were to determine participant perspectives on optimal engagement strategies and priorities for return of results and the extent to which focus groups were an effective modality for gathering input on these topics. We conducted six professionally moderated focus groups with 49 participants in a genomics research study. Transcripts from audio-recorded sessions were coded by two researchers and themes were discussed with the wider research team. All groups raised the issue of mistrust. Individuals participated nonetheless to contribute their perspectives and benefit their community. Many group members preferred engagement modalities that are offered to all participants and allow them to share the nuances of their perspectives over the use of participant representatives and surveys. All groups created a consensus ranking for result return priorities. Results for life-threatening conditions were the highest priority to return, followed by those related to treatable conditions that affect physical or mental health. We advocate for engagement strategies that reach as many participants as possible and allow them to share their perspectives in detail. Such strategies are valued by participants, can be effective for developing return of results policies, and may help institutions become more trustworthy.

Implementing methods in the ELEGANCE registry to increase diversity in clinical research.

OBJECTIVE: Women and underrepresented minorities (URMs) who are at an increased risk of presenting with severe peripheral artery disease (PAD) and have different responses to treatment compared with non-Hispanic White males yet are underrepresented in PAD research. METHODS: ELEGANCE is a global, prospective, multi-center, post-market registry of PAD patients treated with drug-eluting device that aims to enroll at least 40% women and 40% URMs. The study design incorporates strategies to increase enrollment of women and URMs. Inclusion criteria are age ≥18 years and treatment with any commercially available Boston Scientific Corporation drug-eluting device marketed for peripheral vasculature lesions; exclusion criterion is life expectancy <1 year. RESULTS: Of 750 patients currently enrolled (951 lesions) across 39 sites, 324 (43.2%) are female and 350 (47.3%) are URMs (21.6% Black, 11.2% Asian, 8.5% Hispanic/Latino, and 5.3% other). Rutherford classification is distributed differently between sexes (P = .019). Treatment indication differs among race/ethnicity groups (P = .003). Chronic limb-threatening ischemia was higher for Black (38.3%) and Hispanic/Latino (28.1%) patients compared with non-Hispanic White (21.8%) and Asian patients (21.4%). De-novo stenosis was higher in Asian patients (92.3%) compared with Black, non-Hispanic White, and Hispanic/Latino patients (72.2%, 68.7%, and 77.8%, respectively; P < .001). Mean lesion length was longest for Black patients (162.7 mm), then non-Hispanic White (135.2 mm), Asian (134.8 mm), and Hispanic/Latino patients (128.1 mm; P = .008). CONCLUSIONS: Analyses of data from the ELEGANCE registry show that differences exist in baseline disease characteristics by sex and race/ethnicity; these may be the result of other underlying factors, including time to diagnosis, burden of undermanaged comorbidities, and access to care.

Optimizing Patient Engagement in Treatment for Opioid Use Disorder: Primary Care Team Perspectives on Influencing Factors.

BACKGROUND: Opioid use disorder (OUD) care engagement rates in primary care (PC) settings are often low. Little is known about PC team experiences when delivering OUD treatment and potential factors that influence their capacity to engage patients in treatment. Exploring PC team experiences may inform needed supports that can optimize OUD care delivery and improve outcomes for patients with OUD. OBJECTIVE: We explored multidisciplinary PC team perspectives on barriers and facilitators to engaging patients in OUD treatment. DESIGN: Qualitative study using in-depth interviews. PARTICIPANTS: Primary care clinical teams. APPROACH: We conducted semi-structured interviews (n = 35) with PC team members involved in OUD care delivery, recruited using a combination of criterion and maximal variation sampling. Data collection and analysis were informed by existing theoretical literature about patient engagement, specifically that patient engagement is influenced by factors across individual (patient, provider), interpersonal (patient-provider), and health system domains. Interviews were professionally transcribed and doubled-coded using a coding schema based on the interview guide while allowing for emergent codes. Coding was iteratively reviewed using a constant comparison approach to identify themes and verified with participants and the full study team. KEY RESULTS: Analysis identified five themes that impact PC team ability to engage patients effectively, including limited patient contact (e.g., phone, text) in between visits, varying levels of provider confidence to navigate OUD treatment discussions, structural factors (e.g., schedules, productivity goals) that limited provider time, the role of team-based approaches in lessening discouragement and feelings of burnout, and lack of shared organizational vision for reducing harms from OUD. CONCLUSIONS: While the capacity of PC teams to engage patients in OUD care is influenced across multiple levels, some of the most promising opportunities may involve addressing system-level factors that limit PC team time and collaboration and promoting organizational alignment on goals for OUD treatment.

Improving Veteran Engagement with Virtual Care Technologies: a Veterans Health Administration State of the Art Conference Research Agenda.

Although the availability of virtual care technologies in the Veterans Health Administration (VHA) continues to expand, ensuring engagement with these technologies among Veterans remains a challenge. VHA Health Services Research & Development convened a Virtual Care State of The Art (SOTA) conference in May 2022 to create a research agenda for improving virtual care access, engagement, and outcomes. This article reports findings from the Virtual Care SOTA engagement workgroup, which comprised fourteen VHA subject matter experts representing VHA clinical care, research, administration, and operations. Workgroup members reviewed current evidence on factors and strategies that may affect Veteran engagement with virtual care technologies and generated key questions to address evidence gaps. The workgroup agreed that although extensive literature exists on factors that affect Veteran engagement, more work is needed to identify effective strategies to increase and sustain engagement. Workgroup members identified key priorities for research on Veteran engagement with virtual care technologies through a series of breakout discussion groups and ranking exercises. The top three priorities were to (1) understand the Veteran journey from active service to VHA enrollment and beyond, and when and how virtual care technologies can best be introduced along that journey to maximize engagement and promote seamless care; (2) utilize the meaningful relationships in a Veteran's life, including family, friends, peers, and other informal or formal caregivers, to support Veteran adoption and sustained use of virtual care technologies; and (3) test promising strategies in meaningful combinations to promote Veteran adoption and/or sustained use of virtual care technologies. Research in these priority areas has the potential to help VHA refine strategies to improve virtual care user engagement, and by extension, outcomes.

Integrating the patient's voice into the research agenda for treatment of chemosensory disorders.

World-wide some 658 million people were infected with coronavirus disease 2019 (COVID-19) and millions suffer from chemosensory impairment associated with long COVID. Current treatments for taste and smell disorders are limited. Involving patients has the potential to catalyze the dynamic exchange and development of new ideas and approaches to facilitate biomedical research and therapeutics. We assessed patients' perceptions of the efficacy of treatments for chemosensory impairment using an online questionnaire completed by 5,815 people in the US Logistic regression determined variables predictive of reported treatment efficacy for patients aged 18 to 24, 25 to 39, 40 to 60, and 60+ yrs. who were treated with nasal steroids, oral steroids, zinc, nasal rinse, smell training, theophylline, platelet-rich plasma, and Omega 3. The most consistent predictor was age, with the majority of those 40 to 60 and 60+ reporting that nasal steroids, oral steroids, zinc, nasal rinse, and smell training were only slightly effective or not effective at all. Many of these treatment strategies target regeneration and immune response, processes compromised by age. Only those under 40 reported more than slight efficacy of steroids or smell training. Findings emphasize the need to include patients of all ages in clinical trials. Older adults with olfactory impairment are at increased risk for Alzheimer's disease (AD). We speculate that olfactory impairment associated with long COVID introduces the potential for a significant rise in AD. Long COVID-associated chemosensory impairment increases the urgency for translational and clinical research on novel treatment strategies. Suggestions for high-priority areas for epidemiological, basic, and clinical research on chemosensory impairment follow.

The Effects of Patient-Centered Communication on Patient Engagement, Health-Related Quality of Life, Service Quality Perception and Patient Satisfaction in Patients with Cancer: A Cross-Sectional Study in Türkiye.

INTRODUCTION: Patient-centered communication is a type of communication that takes place between the provider and the patient. OBJECTIVES: It is aimed to reveal the effects of patient-centered communication on patient engagement, health-related quality of life, perception of service quality and patient satisfaction. METHOD: The study was conducted by applying multiple regression analysis to the data obtained from 312 patients with cancer treated in a training and research hospital affiliated to the Ministry of Health in Diyarbakir, Türkiye. RESULTS: More than half of the patients were female and had stage 4 cancer. Different types of cancer were detected (breast cancer, cancer of the digestive organs, lymphatic and hematopoietic cancer, cancer of the genital organs, cancer of the respiratory organs, etc.). It can be stated that the average values obtained by patients from patient-centered communication and its sub-dimensions are high. There are positive, moderate and low and significant relationships between the overall patient-centered communication and patient engagement, patient satisfaction, service quality perception and quality of life. It was statistically revealed that patient-centered communication positively affected patient engagement, health-related quality of life, service quality perception, and patient satisfaction. CONCLUSION: Patient-centered communication positively affects various short and medium-term health outcomes and this study offers suggestions for improving patient-provider communication.

Understanding the Intersection of Identity and Cancer Experience Among Racially, Ethnically, Gender and Sexual Minoritized Adolescents and Young Adults With Cancer.

OBJECTIVES: Adolescents and young adults (AYAs, 18-39 years) with cancer identifying as racially/ethnically minoritized or 2SLGBTQIA+ (Two-Spirit, lesbian, gay, bisexual, transgender, queer, intersex, asexual and "+" referring to other queer identities) have been underrepresented in cancer research. This study explores the aspects of identity that hold significance for these minoritized AYAs and how these facets impact their healthcare experiences. METHODS: Eligible participants comprised English-speaking AYAs who self-identified as racially/ethnically minoritized and/or 2SLGBTQIA+, were diagnosed with cancer between the ages of 15-39, currently aged > 18, and had received or were receiving cancer care within Canadian healthcare system. Additionally, four patient partners meeting the same criteria were recruited as research collaborators. Semi-structured one-on-one virtual interviews guided by an interview script were conducted, and qualitative analysis employed a framework approach. RESULTS: We recruited 23 participants from 4 Canadian provinces (mean age: 28, Range: 20-44); 17 identified as racially/ethnically minoritized, one as sexual/gender minoritized, and five as racially/ethnically and sexually/gender minoritized. Participants emphasized that their culture/ethnicity, religion/spirituality, sexuality, gender, family, career, and being an immigrant are important aspects of their identity, with only one participant recognizing their identity as a "person with cancer". A cancer diagnosis altered the aspects of identity deemed most significant by participants. Both visible and invisible aspects of identity shaped participants' experiences and influenced their level of trust in the healthcare system. CONCLUSION: Racially, ethnically, gender, or sexually minoritized AYAs with cancer place considerable importance on aspects of their identity that are shaped by their respective communities. Recognizing and respecting these identities are paramount for healthcare professionals to deliver safe and inclusive care.

Priorities for HIV and chronic pain research: results from a survey of individuals with lived experience.

The Global Task Force on Chronic Pain in HIV published seven research priorities in the field of HIV-associated chronic pain in 2019: (1) causes; (2) management; (3) treatment individualization and integration with addiction treatment; (4) mental and social health factors; (5) prevalence; (6) treatment cost effectiveness; and (7) prevention. The current study used a web-based survey to determine whether the research topics were aligned with the priorities of adults with lived experiences of HIV and chronic pain. We also collected information about respondents' own pain and treatment experiences. We received 311 survey responses from mostly US-based respondents. Most respondents reported longstanding, moderate to severe, multisite pain, commonly accompanied by symptoms of anxiety and/or depression. The median number of pain treatments tried was 10 (IQR = 8, 13), with medications and exercise being the most common modalities, and opioids being viewed as the most helpful. Over 80% of respondents considered all research topics either "extremely important" or "very important". Research topic #2, which focused on optimizing management of pain in people with HIV, was accorded the greatest importance by respondents. These findings suggest good alignment between the priorities of researchers and US-based people with lived experience of HIV-associated chronic pain.

Evaluating patient and family preferences for acute and preventive pediatric headache treatment.

OBJECTIVE: To describe acute and preventive treatment preferences among youth with migraine and their parents/guardians, and to describe the degree of youth-parent/guardian preference agreement. BACKGROUND: Headache disorders are common in youth, but little is known about patient and family preferences for headache treatments and outcomes. METHODS: In this cross-sectional survey, a headache treatment preferences questionnaire was co-created with stakeholders, piloted, and distributed to consenting youth with migraine aged 9-18 years and parents/guardians at a tertiary care headache clinic in western Canada. Response data were summarized for youth and parents/guardians separately, and agreement rates within a youth-parent/guardian pair were compared to a hypothesized agreement rate of 80% for the primary questionnaire items. RESULTS: Seventy-two youth and n = 94 parents/guardians participated, with n = 63 in youth-parent/guardian pairs. Freedom from pain and rapid relief, and reducing pain severity and headache frequency were top acute and preventive treatment priorities, respectively. More than 90% (69/72) agreed that ≥ 50% reduction in headache frequency was a good target. For both acute and preventive interventions, swallowed pill-based options were most often selected as the preferred first-line treatment, with neuromodulation selected as the preferred second-line treatment. The level of agreement within youth-parent/guardian pairs on preferred treatment modalities was lower than hypothesized for acute (63% [40/63], 95% confidence interval [CI] = 52-75%, χ2 = 10.73, p = 0.001) but not for preventive treatment (73% [46/63], 95% CI = 62-84%, χ2 = 1.92, p = 0.166). Regarding which treatment modalities were perceived as most effective, youth-parent agreement was lower than hypothesized for both acute (48% [30/63], 95% CI = 35-60%, χ2 = 41.29, p < 0.001) and preventive treatment (46% [29/63], 95% CI = 34-58%, χ2 = 45.43, p < 0.001). CONCLUSION: Youth and family preferences aligned qualitatively, but sometimes diverged quantitatively, from typical clinical trial outcomes. The level of agreement within youth-parent/guardian pairs on treatment preferences and perceptions was low. Clinicians should consider both perspectives as they may be divergent.

BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study.

Aims: To characterize Black, Indigenous and People of Color (BIPOC) adolescent and young adult (AYA) cancer patients' experiences of patient engagement in AYA oncology and derive best practices that are co-developed by BIPOC AYAs and oncology professionals. Materials & methods: Following a previous call to action from AYA oncology professionals, a panel of experts composed exclusively of BIPOC AYA cancer patients (n = 32) participated in an electronic Delphi study. Results: Emergent themes described BIPOC AYA cancer patients' direct experiences and consensus opinion on recommendations to advance antiracist patient engagement from BIPOC AYA cancer patients and oncology professionals. Conclusion: The findings reveal high-priority practices across all phases of research and are instructional for advancing health equity.

Patient engagement in designing and publishing research in prostate cancer: a scoping review.

Patients with cancer have the unique ability of being able to offer valuable insights into how cancer therapeutics may impact the overall patient experience and improve clinical outcomes. Patient engagement could therefore contribute to tailoring treatment strategies and research design according to patient needs. This study evaluated patient engagement in prostate cancer research by identifying patient input in the prostate cancer literature. We performed a keyword cluster analysis of articles from multiple databases and congresses in which patients provided input on disease management or were involved in study design, manuscript authorship or presentation of results (patient voice). In total, 112 studies were included. Patients were involved in the design of 11 studies and were credited as authors in four studies. This review suggests a lack of meaningful patient involvement in prostate cancer research and publications.

Patients with cancer have first-hand knowledge of what does and does not work for their care. Therefore, their voice is valuable to help improve treatment and guide research. Our goal was to find prostate cancer articles with patient input. We searched databases using keywords related to patient voice. We looked for articles involving patients in designing, writing or presenting the study. Only four out of the 112 articles we identified were published in journals focused on involving patients. Eleven articles involved patients in designing the study. Four articles involved patients in writing the published work. Overall, we did not find many articles where patients had a meaningful role in the study. Prostate cancer treatment and research will likely benefit from more patient input.

TikTok and pediatric nephrology: content quality assessment of videos related to pediatric kidney disease and kidney transplant.

BACKGROUND: Social media platforms such as TikTok™ are key sources of health information for young patients and caregivers. Misinformation is prevalent on TikTok™ across healthcare fields, which can perpetuate false beliefs about medical care. Limited data exists on the reliability of pediatric nephrology TikTok™ content. This study aimed to describe the quality of medical content of TikTok™ Videos (TTVs), related to pediatric kidney disease and transplant. METHODS: TTVs were selected using specific search terms and categorized into pediatric kidney disease and kidney transplant, excluding duplicate and adult-related content. The top 100 TTVs in each category, based on views, were analyzed. TTV characteristics were stratified by account type (physician, non-physician healthcare professional (HCP), non-HCP) and video aim (personal story, education, entertainment). DISCERN scoring, a validated questionnaire evaluating health information reliability, was conducted by 4 independent raters. Inter-rater reliability was assessed using a 2-way random effects model, and differences between content creator types were evaluated using one-way ANOVA and post-Hoc Tukey test. RESULTS: TTVs had a total of 12.5 million likes and 113.1 million views. Over 70% of videos were created by non-HCPs (n = 147/200). DISCERN scoring revealed low reliability of medical information across content creator types. TTVs created by physicians and non-physician HCPs about kidney disease had significantly higher mean DISCERN scores compared to those created by non-HCPs (2.85, p < 0.001 and 2.48, p = 0.005, respectively). CONCLUSIONS: Educators within the pediatric nephrology community must keep in mind the lack of reliability of medical information available on TikTok™ and coordinate collective efforts to consider utilizing TikTok™ for patient education.

Oncology patients' willingness to report their medication safety concerns from home: a qualitative study.

PURPOSE: Oncology patients often struggle to manage their medications and related adverse events during transitions of care. They are expected to take an active role in self-monitoring and timely reporting of their medication safety events or concerns to clinicians. The purpose of this study was to explore the factors influencing oncology patients' willingness to report adverse events or concerns related to their medication after their transitions back home. METHODS: A qualitative interview study was conducted with adult patients with breast, prostate, lung, or colorectal cancer who experienced care transitions within the previous year. A semi-structured interview guide was developed to understand patients' perceptions of reporting mediation-related safety events or concerns from home. All interviews were conducted via phone calls, recorded, and transcribed for thematic data analysis. RESULTS: A total of 41 individuals participated in the interviews. Three main themes and six subthemes emerged, including patients' perceived relationship with clinicians (the quality of communication and trust in clinicians), perceived severity of adverse medication events (perceived severe vs. non-severe events), and patient activation in self-management (self-efficacy in self-management and engagement in monitoring health outcomes). CONCLUSION: The patient-clinician relationship significantly affects patients' reporting behaviors, which can potentially interact with other factors, including the severity of adverse events. It is important to engage oncology patients in medication safety self-reporting from home by enhancing health communication, understanding patients' perceptions of severe events, and promoting patient activation. By addressing these efforts, healthcare providers should adopt a more patient-centered approach to enhance the overall quality and safety of oncological care.

Patient adherence to patient-reported outcome measure (PROM) completion in clinical care: current understanding and future recommendations.

BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly being used as an assessment and monitoring tool in clinical practice. However, patient adherence to PROMs completions are typically not well documented or explained in published studies and reports. Through a collaboration between the International Society for Quality-of-Life Research (ISOQOL) Patient Engagement and QOL in Clinical Practice Special Interest Groups (SIGs) case studies were collated as a platform to explore how adherence can be evaluated and understood. Case studies were drawn from across a range of clinically and methodologically diverse PROMs activities. RESULTS: The case studies identified that the influences on PROMs adherence vary. Key drivers include PROMs administeration methods within a service and wider system, patient capacity to engage and clinician engagement with PROMs information. It was identified that it is important to  evaluate  PROMs integration and adherence from multiple perspectives. CONCLUSION: PROM completion rates are an important indicator of patient adherence. Future research prioritizing an understanding of PROMs completion rates by patients is needed.

Effectiveness of Virtual Reality-Based Rehabilitation Interventions in Improving Postoperative Outcomes for Orthopedic Surgery Patients.

PURPOSE OF REVIEW: The surge in orthopedic surgeries strains the US healthcare system, necessitating innovative rehabilitation solutions. This review examines the potential of virtual reality (VR)-based interventions for orthopedic rehabilitation. RECENT FINDINGS: The effectiveness of VR-based interventions in orthopedic surgery patients is scrutinized. While some studies suggest better patient-reported outcomes and satisfaction, mixed results emerge from others, demonstrating comparable or varied results compared to traditional rehabilitation. The underlying mechanisms of VR-based rehabilitation are elucidated, showing its positive impact on proprioception, pain management, agency, and balance. Challenges of unfamiliarity, patient engagement, and drop-out rates are identified, emphasizing the need for tailored approaches. VR technology's immersive environments and multisensory experiences offer a novel approach to addressing functional deficits and pain post-surgery. The conclusion drawn is that VR-based rehabilitation complements rather than replaces conventional methods, potentially aiding in pain reduction and functional improvement. VR-based rehabilitation holds promise for enhancing orthopedic surgery outcomes, presenting a dynamic approach to recovery. Its potential to reshape healthcare delivery and reimbursement structures underscores its significance in modern healthcare. Overall, VR-based rehabilitation offers a promising avenue for optimizing postoperative recovery in orthopedic surgery patients.

Patients' perspectives on their motivations for participating in non-clinical medical teaching and what they gain from their experience: a qualitative study informed by critical theory.

In 2019-2021, we engaged in a project aimed at developing, implementing, and evaluating an educational intervention actively involving patient-teachers in undergraduate medical education at Université Laval, Quebec, Canada. Patient-teachers were invited to participate in small group discussion workshops during which medical students deliberate on legal, ethical, and moral issues arising from medical practice. Patients were expected to bring other perspectives, based on their experience with illness and the healthcare system. Little is still known about patients' perspectives on their participation experience in such context. Informed by critical theory, our qualitative study aims to document,: (i) the motivating factors for patients' participation in our intervention; and (ii) what patients gained from the experience. Data collection was based on 10 semi-structured interviews with patient-teachers. A thematic analysis was conducted using NVivo software. Motivators for participation arose from: (i) perceived consistency between patients' individual characteristics and those of the project, and (ii) conceiving the project as a means to reach individual and social goals. What patients gained mainly refers to (1) the appreciation of a positive, enriching, motivating yet uncomfortable and destabilizing experience; (2) a deconstruction of biases against the medical field and critical thinking about their own experience; (3) new knowledge, with a potential impact on their future interactions with the healthcare system. Results reveal patients as non-neutral thinking and knowing subjects, engaged in the participation experience as active teachers and learners. They also highlight the empowering and emancipatory nature of the learning gained through patients' participation experience. These conclusions prompt us to promote transformative interventional approaches that question the pervasive power issues in medical teaching and value patients' specific knowledge in teaching and learning the Art of Medicine.

A systematic review of theories, models and frameworks used for youth engagement in health research.

BACKGROUND: Youth engagement in research, wherein youth are involved in the research beyond mere participation as human subjects, is growing and becoming more popular as an approach to research. However, systematic and deliberate theory-building has been limited. We conducted a systematic review to identify and synthesize theories, models and frameworks that have been applied in the engagement of youth in health research, including mental health. METHODS: Six academic databases (MEDLINE, PsycINFO, Embase, PubMed, Scopus, CINAHL) and the grey literature were searched for relevant studies. Citation tracking was conducted through ancestry and descendancy searches. The final search was completed on 7 February 2023. Findings were summarized in a narrative synthesis informed by principles of hermeneutic analysis and interpretation. Reporting of results is in accordance with the PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) 2020 Statement. RESULTS: Of the 1156 records identified, 16 papers were included, from which we extracted named theories (n = 6), implicit theories (n = 5) and models and frameworks (n = 20) used for youth engagement in health research. We identified theories that were explicitly stated and surfaced theories that were more implicitly suggested. Models and frameworks were organized into four categories based on their principal features: power-focused (n = 8), process-focused (n = 7), impact-focused (n = 3) and equity-focused (n = 2). Few frameworks (n = 5) were empirically tested in health-related research. CONCLUSIONS: The state of theoretical development in youth engagement in research is still evolving. In this systematic review, we identified theories, models and frameworks used for youth engagement in health research. Findings from this systematic review offer a range of resources to those who seek to develop and strengthen youth engagement in their own research. PATIENT OR PUBLIC CONTRIBUTION: Youth engaged as patients in the research were not involved in planning or conducting the systematic review. However, youth researchers in their early to mid-20s led the planning, implementation and interpretation of the review. As part of subsequent work, we formed a youth advisory board to develop a youth-led knowledge mobilization intended for an audience of youth with lived experience of being engaged as patients in research.

'Safety is about partnership': Safety through the lens of patients and caregivers.

INTRODUCTION: Creating safer care is a high priority across healthcare systems. Despite this, most systems tend to focus on mitigating past harm, not creating proactive solutions. Managers and staff identify safety threats often with little input from patients and their caregivers during their health encounters. METHODS: This is a qualitative descriptive study utilizing focus groups and one-to-one interviews with patients and caregivers who were currently using (or had previously used) services in health systems across Canada. Data were analysed via inductive thematic analysis to understand existing and desired strategies to promote safer and better quality care from the perspectives of patients and caregivers. FINDINGS: In our analysis, we identified three key themes (safety strategies) from patients' and caregivers' perspectives and experiences: Using Tools and Approaches for Engaging Patients and Caregivers in their Care; Having Accountability Processes and Mechanisms for Safe Care; and Enabling Patients and Caregivers Access to Information. CONCLUSIONS: Safety is more than the absence of harm. Our findings outline a number of suggestions from patients and caregivers on how to make care safer, ranging from being valued on teams, participating as members of quality improvement tables, having access to health information, having access to an advocate to help make sense of information and having processes in place for disclosure and closure. Future work can further refine, implement and evaluate these strategies in practice. PATIENT OR PUBLIC CONTRIBUTIONS: An advisory group guided the research and was co-chaired by a patient partner. Members of the advisory group spanned patient and caregiver organizations and health sectors across Canada and included three patient partners and leaders who work closely with patients and caregivers in their day-to-day work. In the research itself, we engaged 28 patients and caregivers from across Canada to learn about their safety experiences and learn what safer care looks like from their perspectives.

What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines.

BACKGROUND: An integral aspect of patient engagement in research, also known as patient and public involvement, is appropriately recognising patient partners for their contributions through compensation (e.g., coauthorship, honoraria). Despite known benefits to compensating patient partners, our previous work suggested compensation is rarely reported and researchers perceive a lack of guidance on this issue. To address this gap, we identified and summarised available guidance and policy documents for patient partner compensation. METHODS: We conducted this scoping review in accordance with methods suggested by the JBI. We searched the grey literature (Google, Google Scholar) in March 2022 and Overton (an international database of policy documents) in April 2022. We included articles, guidance or policy documents regarding the compensation of patient partners for their research contributions. Two reviewers independently extracted and synthesised document characteristics and recommendations. RESULTS: We identified 65 guidance or policy documents. Most documents were published in Canada (57%, n = 37) or the United Kingdom (26%, n = 17). The most common recommended methods of nonfinancial compensation were offering training opportunities to patient partners (40%, n = 26) and facilitating patient partner attendance at conferences (38%, n = 25). The majority of guidance documents (95%) suggested financially compensating (i.e., offering something of monetary value) patient partners for their research contributions. Across guidance documents, the recommended monetary value of financial compensation was relatively consistent and associated with the role played by patient partners and/or specific engagement activities. For instance, the median monetary value for obtaining patient partner feedback (i.e., consultation) was $19/h (USD) (range of $12-$50/h). We identified several documents that guide the compensation of specific populations, including youth and Indigenous peoples. CONCLUSION: Multiple publicly available resources exist to guide researchers, patient partners and institutions in developing tailored patient partner compensation strategies. Our findings challenge the perception that a lack of guidance hinders patient partner financial compensation. Future efforts should prioritise the effective implementation of these compensation strategies to ensure that patient partners are appropriately recognised. PATIENT OR PUBLIC CONTRIBUTIONS: The patient partner coauthor informed protocol development, identified data items, and interpreted findings.