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Abstract Background Only 40–60% of patients with generalized anxiety disorder experience long-lasting improvement with gold standard psychosocial interventions. Identifying neurobehavioral factors that predict treatment success might provide specific targets for more individualized interventions, fostering more optimal outcomes and bringing us closer to the goal of “personalized medicine.” Research suggests that reward and threat processing (approach/avoidance behavior) and cognitive control may be important for understanding anxiety and comorbid depressive disorders and may have relevance to treatment outcomes. This study was designed to determine whether approach-avoidance behaviors and associated neural responses moderate treatment response to exposure-based versus behavioral activation therapy for generalized anxiety disorder. Methods/design We are conducting a randomized controlled trial involving two 10-week group-based interventions: exposure-based therapy or behavioral activation therapy. These interventions focus on specific and unique aspects of threat and reward processing, respectively. Prior to and after treatment, participants are interviewed and undergo behavioral, biomarker, and neuroimaging assessments, with a focus on approach and avoidance processing and decision-making. Primary analyses will use mixed models to examine whether hypothesized approach, avoidance, and conflict arbitration behaviors and associated neural responses at baseline moderate symptom change with treatment, as assessed using the Generalized Anxiety Disorder–7 item scale. Exploratory analyses will examine additional potential treatment moderators and use data reduction and machine learning methods. Discussion This protocol provides a framework for how studies may be designed to move the field toward neuroscience-informed and personalized psychosocial treatments. The results of this trial will have implications for approach-avoidance processing in generalized anxiety disorder, relationships between levels of analysis (i.e., behavioral, neural), and predictors of behavioral therapy outcome. Trial registration The study was retrospectively registered within 21 days of first participant enrollment in accordance with FDAAA 801 with ClinicalTrials.gov, NCT02807480. Registered on June 21, 2016, before results.

Introduction: Despite widespread calls to involve patients, families and caregivers (PFCs) as partners at all levels of health system planning and design, there is unevenness in how engagement efforts are supported across these settings. The concept of 'engagement-capable environments' offers a way forward to uncover the key requirements for sustainable, high-quality engagement, but more work is needed to identify the specific competencies required to create these environments. We addressed this gap by developing a capability framework for Ontario Health Teams (OHTs), a newly established structure for planning, designing, organizing and delivering care in Ontario, Canada., Methods: The framework was co-developed by a Working Group of OHT staff and leaders, PFC partners, researchers and government personnel. Project activities occurred over four phases: (1) planning, (2) evidence review and surveying of intended users to identify key competencies, (3) framework design and (4) implementation., Results: An evidence review identified more than 90 potential competencies for this work. These results were contextualized and expanded through a survey of OHT stakeholders to brainstorm potential competencies, supports and enablers for engagement. Surveys were completed by 69 individuals; 689 knowledge and skill competency statements, 462 attitude and behaviour competency statements and 250 supports and enablers were brainstormed. The statements were analysed and organized into initial competency categories, which were reviewed, discussed and iteratively refined by Working Group members and through broader consultations with the OHT community. The final framework includes six competency domains and four support and enabler domains, each with sub-domain elements, mapped across a three-stage maturity model. The framework has been disseminated across OHTs, and its adoption and implementation are now requirements within OHT agreements., Conclusion: The framework combines a strong conceptual foundation with actionable elements informed by the literature and consultations with the intended users of the framework. Although developed for OHTs, the framework should be broadly applicable to other health system organizations seeking similar health system transformation goals., Patient Contribution: Patient, family and caregiver partners were involved at all stages and in all aspects of the work. As end users of the framework, their perspectives, knowledge and opinions were critical., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Trauma leads to mental health problems including posttraumatic stress disorder (PTSD), depression, and anxiety. New treatments are needed for traumatic stress that can overcome barriers to care while targeting underlying biological mechanisms of the pathology. Morning light treatment has potential as a novel intervention for traumatic stress. We conducted a randomized clinical trial testing 3 doses of a 4-week morning light treatment in people with traumatic stress to evaluate brain mechanisms underlying the treatment. Forty-six participants completed a baseline week followed by a 4-week morning light treatment (15, 30 or 60 mins each morning). Functional magnetic resonance imaging was conducted at pre- and post-treatment using an emotional faces task to probe the amygdala, based on prior work showing direct effects of light on the amygdala and the role of amygdala in traumatic stress. Clinician-rated symptoms and self-reported symptoms were also assessed at pre- and post-treatment. No group differences were observed in left amygdala reactivity, but right amygdala reactivity reduced only in the 30 and 60 min groups with medium effect sizes. Clinical symptoms reduced in all groups with medium to large effect sizes. Self-reported depression and anxiety scores reduced more in the 60 min than in the 15 min group (p = .02). The results suggest that 4 weeks of morning light treatment of at least 30 min per day can reduce amygdala reactivity and symptoms of traumatic stress. Morning light treatment should be further explored as a potential treatment for traumatic stress, given it is relatively safe, acceptable, accessible and scalable., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Helen Burgess reports financial support was provided by National Institutes of Health. Helen Burgess reports a relationship with Natrol Inc that includes: consulting or advisory. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Objective: Screening for lung cancer with low dose computed tomography aims to reduce lung cancer mortality, but there is a lack of knowledge about how target populations consider its potential benefits and harms., Methods: We conducted a systematic review of primary empirical studies published in any jurisdiction since 2002 using an integrative meta-synthesis technique. We searched six health and social science databases. Two reviewers independently screened titles, abstracts, and potentially eligible full-text studies. Quantitative assessments and open-ended perspectives on benefits and harms were extracted and convergently integrated at analysis using a narrative approach. Study quality was assessed., Results: The review included 26 quantitative, 18 qualitative, and 5 mixed methods studies. Study quality was acceptable. Lung cancer screening was widely perceived to be personally beneficial for early detection and reassurance. Radiation exposure and screening accuracy were recognised as harms, but these were frequently considered to be justified by early detection of lung cancer. Stigma, anxiety, and fear related to screening procedures and results were pervasive among current smokers. People with low incomes reported not participating in screening because of potential out-of-pocket costs and geographic access., Conclusions: Populations targeted for lung cancer screening tended to consider screening as personally beneficial and rationalised physical, but not psychological, harms. Screening programmes should be clear about benefits, use non-stigmatising design, and consider equity as a guiding principle., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Almost 50,000 people in Canada have had a medically assisted death since federal legislation was passed in 2016. Still, the debate about the permissibility of medical assistance in dying (MAiD) continues to rage. The central role of shared values and ethics in public policy making emphasizes the importance of engaging the public, particularly around heavily value-laden issues such as MAiD. Public deliberation, a mode of engagement that fosters sustained and reasoned discussion between participants, is well-suited to addressing such ethically contentious policy issues. In this paper, we review recent efforts to engage the public on assisted dying within and outside Canada and explain how public deliberation could contribute substantively to MAiD policy making., (Copyright © 2024 Longwoods Publishing.)

Introduction: Public engagement in long-term care policy making in Canada has primarily focused on "intermediary agents" who speak on behalf of long-term care (LTC) residents and their family caregivers. Yet the legitimacy of these intermediaries, as perceived by those they represent, has gone largely unexplored. This study examines LTC resident and family perspectives on who can legitimately represent them in LTC policy making., Methodology: We used an interpretive description design, drawing on semi-structured interviews with LTC residents and family caregivers in Ontario, Canada. Data were analyzed using inductive thematic analysis., Results: Eighteen interviews were conducted with 19 participants. Three key characteristics of legitimate representatives were identified: (1) willingness to act in the best interests of residents and families, (2) having the necessary skills and capacity to participate in LTC policy making and (3) engaging directly with residents and families., Conclusion: Governments and civil society organizations seeking to establish and maintain legitimacy in the eyes of LTC residents and family members can pursue this goal by supporting intermediaries who mirror the identities or experiences of those they represent, who are dedicated to serving their interests and who routinely and directly engage with them to understand the realities of LTC., (Copyright © 2024 Longwoods Publishing.)

Introduction: Canada has a rich history of public engagement in health policy; however, shifts in engagement practices over time have not been critically examined., Methodology: We searched for cases of government-initiated public engagement in Canadian health policy from 2000 to 2021 at the federal, provincial (Ontario, British Columbia, Nova Scotia) and pan-Canadian levels. Government databases, portals and platforms for engagement were searched, followed by academic and grey literature using relevant search terms. A coding scheme was iteratively developed to categorize cases by target population, recruitment method and type of engagement., Results: We identified 132 cases of government-initiated public engagement. We found a predominance of feedback and consultation engagement types and self-selection recruitment, especially at the federal level from 2016 onward. Engagements that targeted multiple populations (patients, public and other stakeholders) were favoured overall and over time. Just over 10% of cases in our survey mentioned efforts to engage with equity-deserving groups., Conclusion: Overall, our results identify a heavy reliance over time on more passive, indirect engagement approaches, which limit opportunities for collaborative problem solving and fail to include equity-deserving populations. Those overseeing the design and implementation of government-initiated public engagement will draw valuable lessons from this review to inform the design of engagement initatives., (Copyright © 2024 Longwoods Publishing.)

Canada has a rich history of public engagement in the health policy sector. However, current political, economic and social challenges call for critical reflection on this history, to assess whether current approaches to engaging Canadian publics are up to the task, and what adaptations or new approaches might be needed. If the persisting inequities in health systems across Canada are going to be addressed, it is imperative that those designing, developing and implementing policies find ways to reflect the needs and preferences of the communities and populations most adversely affected by these inequities in their decisions. The purpose of this special issue is to address this important topic through a series of research papers and commentaries. Our work is targeted to health policy makers across Canada who are seeking to engage with various publics on a wide array of health policy issues. We offer key insights into what more purposeful and equitable public engagement might look like, as well as common pitfalls in public engagement practices and how they can be avoided., (Copyright © 2024 Longwoods Publishing.)

Normative issues associated with the design and implementation of population-based lung cancer screening policies are underexamined. This study was an exposition of the ethical justification for screening and potential ethical issues and their solutions in Canadian jurisdictions. A qualitative description study was conducted. Key informants, defined as policymakers, scientists and clinicians who develop and implement lung cancer screening policies in Canada, were purposively sampled and interviewed using a semi-structured guide informed by population-based disease screening principles and ethical issues in cancer screening. Interview data were analyzed using qualitative content analysis. Fifteen key informants from seven provinces were interviewed. Virtually all justified screening by beneficence, describing that population benefits outweigh individual harms if high-risk people are screened in organized programs according to disease screening principles. Equity of screening access, stigma and lung cancer primary prevention were other ethical issues identified. Key informants prioritized beneficence over concerns for group-level justice issues when making decisions about whether to implement screening policies. This prioritization, though slight, may impede the implementation of screening policies in a way that effectively addresses justice issues, a goal likely to require justice theory and critical interpretation of disease screening principles., (© The Author(s) 2024. Published by Oxford University Press.)

Introduction: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy-making for older adults., Methods: A systematic search of peer-reviewed and grey literature (English only) describing public engagement initiatives in health policy-making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts., Results: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy-making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation-type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives., Conclusion: This review describes how public engagement practices have been conducted to help inform health policy-making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector., Patient or Public Contribution: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Many patients with major depressive disorder (MDD) try multiple antidepressants before finding one that works well and is tolerable. Pharmacogenomic (PGx) testing was developed to facilitate more efficacious prescribing. This technology has not been robustly implemented clinically. Patient perspectives are critical to policy decisions, but the views of patients with MDD about the use of PGx testing to guide antidepressant prescribing have not been extensively examined, particularly in publicly funded healthcare systems. The purpose of this qualitative description study was to produce actionable patient perspectives evidence to inform future technology assessment of PGx testing. We conducted semi-structured interviews with 21 adults with MDD for which antidepressants were indicated in Ontario, Canada, and used the Ontario Decision Determinants Framework to conduct an unconstrained deductive content analysis. Patients expressed views about the overall clinical benefit of PGx testing in depression care, preferences for deployment of testing, perspectives on ethical considerations, opinions about equity and patient care, and beliefs regarding the feasibility of adopting PGx testing into the healthcare system. They also worried about the possibility of conflicts of interest between PGx test manufacturers and pharmaceutical companies. This study provides policymakers with patient priorities to facilitate the development of patient-centred policies. It highlights that formal adoption of PGx testing into the healthcare system requires a focus on equity of access and health outcomes., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Stakeholder participation is a key component of a fair and equitable priority-setting in health. The COVID-19 pandemic highlighted the need for fair and equitable priority setting, and hence, stakeholder participation. To date, there is limited literature on stakeholder participation in the development of the pandemic plans (including the priority setting plans) that were rapidly developed during the pandemic. Drawing on a global study of national COVID-19 preparedness and response plans, we present a secondary analysis of COVID-19 national plans from 70 countries from the six WHO regions, focusing on stakeholder participation. We found that most plans were prepared by the Ministry of Health and acknowledged WHO guidance, however less than half mentioned that additional stakeholders were involved. Few plans described a strategy for stakeholder participation and/or accounted for public participation in the plan preparation. However, diverse stakeholders (including multiple governmental, non-governmental, and international organizations) were proposed to participate in the implementation of the plans. Overall, there was a lack of transparency about who participated in decision-making and limited evidence of meaningful participation of the community, including marginalized groups. The critical relevance of stakeholder participation in priority setting requires that governments develop strategies for meaningful participation of diverse stakeholders during pandemics such as COVID-19, and in routine healthcare priority setting., Competing Interests: Declaration of competing interest We declare no conflict., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Despite the swift governments' response to the COVID-19 pandemic, there remains a paucity of literature assessing the degree to which; priority setting (PS) was included in the pandemic plans and the pandemic plans were publicly accessible. This paper reflects on the methods employed in a global comparative analysis of the degree to which countries integrated PS into their COVID-19 pandemic plans based on Kapiriri & Martin's framework. We also assessed if the accessibility of the plans was related to the country's transparency index., Methods: Through a three stage search strategy, we accessed and reviewed 86 national COVID-19 pandemic plans (and 11 Canadian provinces and territories). Secondary analysis assessed any alignment between the readily accessible plans and the country's transparency index., Results and Conclusion: 71 national plans were readily accessible while 43 were not. There were no systematic differences between the countries whose plans were readily available and those whose plans were 'missing'. However, most of the countries with 'missing' plans tended to have a low transparency index. The framework was adapted to the pandemic context by adding a parameter on the need to plan for continuity of priority routine services. While document review may be the most feasible and appropriate approach to conducting policy analysis during health emergencies, interviews and follow up document review would assess policy implementation., Competing Interests: Declaration of competing interest We declare no conflict., (Copyright © 2024. Published by Elsevier B.V.)

Introduction: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one-time honorarium, salary) and amount. Further, broad-based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation., Methods: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self-identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open-text comments in addition to menu-based and scaled response options. Basic frequencies were performed for all questions and open-text comments were analyzed through inductive qualitative content analysis., Results: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open-text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships., Conclusions: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts., Patient Contribution: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co-authors of this manuscript. The survey was co-designed and pilot tested with patient partners and survey participants were patient partners., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries., Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention., Findings: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI., Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources., Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Increasingly researchers are partnering with citizens and communities in research; less is known about research impacts of this engagement. EMBOLDEN is an evidence-informed, mobility-promoting intervention for older adults co-designed by a 26-person Strategic Guiding Council (SGC) of health/social service providers and older adult citizens. This study evaluated research partners' perceptions of engagement strategies, the engagement context, strengths, areas for improvement, as well as the impacts of the guiding council on older-adult identified priority areas., Methods: This study was guided by developmental evaluation, working in partnership with four older adult SGC members who helped to set evaluation priorities, decide methods, and adapt patient-centred evaluation tools. Data sources included a questionnaire, focus groups and document analysis of meeting notes from 16 SGC meetings that took place between December 2019 and February 2022. A thematic approach to analysis guided the coding of focus group transcripts and SGC meeting notes. Convergent mixed methods guided the integration and presentation of qualitative and quantitative data sources in a joint display of evaluation results., Results: Of 26 SGC members, nine completed the evaluation squestionnaire, and five participated in focus groups. Around two thirds of the SGC commonly attended each meeting. EMBOLDEN's SGC was structured to include a diverse group (across gender, ethnicity and discipline) of older adults and service providers, which was perceived as a strength. Engagement processes were perceived as inclusive and well-facilitated, which stimulated discussion at meetings. Advantages and disadvantages of engaging with the SGC virtually, as compared to in-person (as was the case for the first 3 SGC meetings) were also discussed. Impacts of the SGC were identified across preparatory, execution phase and translational stages of research. Impacts of SGC involvement on members were also described., Conclusion: Older adult research partners played an important role designing, implementing, and evaluating co-design approaches in this study. Older adults and service providers can make important contributions to the design, delivery and sharing results of health research through their lived expertise and connections to community. This project contributes to the growing field of citizen and community engagement in research by offering a participatory approach to engagement evaluation that considers diversity, satisfaction, and impact., (© 2023. The Author(s).)

Background: The Chronic Pain Network (CPN) is a pan-Canadian research network focused on innovating and improving the quality and delivery of pain prevention, assessment, management and research for all Canadians. An important focus of the CPN is to work in collaboration with patient partners. Patient partners, researchers and clinicians work together in all aspects of the research network including on funded research projects and in the governance of the Network. Given this focus, the CPN identified the importance of evaluating their patient engagement work to understand its functioning and impact., Methods: The objective of this exploratory evaluation case study was to understand the impacts of patient engagement on the CPN. The CPN worked with an external evaluation team which established an arms-length approach to the evaluation. Interviews were conducted with CPN members, including patient partners, leadership, funded researchers and committee co-chairs, at three discrete time points to trace the evolution of the patient engagement program within the Network. Key Network documents were also collected and reviewed. Data were analyzed following each set of interviews using content analysis guided by the principles of constant comparison and qualitative description. A final round of analysis was conducted using the Engage with Impact Toolkit, an impact measurement framework, to identify impacts of engagement., Results: Impacts of patient engagement were identified at the individual, network, funded research project and research community levels. These impacts were observed in the following areas: (1) building community; (2) developing knowledge, skills and resources; (3) increasing confidence; (4) influencing priorities and decisions; (5) enabling additional opportunities; (6) promoting culture change; and, (7) coping with experiences of living with chronic pain., Conclusions: While not without challenges, the patient engagement efforts of the CPN demonstrates the impact engaging patient partners can have on a national research network and related policy activities. Understanding the approaches to, and impacts of, patient engagement on health research networks can illuminate the value of having patient partners engaged in all aspects of a research network and should serve as encouragement to others who look to take on similar work., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Introduction: Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit-the Engage with Impact Toolkit., Methods: The measurement framework and toolkit were co-designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberations and (4) toolkit web design., Results: The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu-driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient-centredness; (7) culture change and (8) patient outcomes and experience. Working Group members rated the final list for importance (1-5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web-based toolkit (www.evaluateengagement.ca) hosts the measurement framework and related evaluation supports., Conclusion: The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work., Patient Contribution: Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end-users of the toolkit, their perspectives, knowledge and opinions were critical., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Introduction: The unique evidentiary, economic and ethical challenges associated with health technology assessment (HTA) of precision therapies limit access to novel drugs and therapeutics for children and youth, for whom such challenges are amplified. We elicited citizens' perspectives about values-based criteria relevant to the assessment of paediatric precision therapies to inform the development of a child-tailored HTA framework., Methods: We held four citizen panels virtually in May-June 2021, informed by a plain-language citizen brief summarizing global and local evidence about the challenges, policy and programmatic options and implementation strategies related to enhancing access to precision therapies for Canadian children and youth. Panellists were recruited through a nationally representative database, medical/patient networks and social media. We inductively coded and thematically analysed panel transcripts to generate themes and identify priority values., Results: The perspectives of panellists (n = 45) coalesced into four overlapping themes, with attendant subthemes, relevant to a child-tailored HTA framework: (1) Childhood Distinctions: vulnerability, 'fair innings', future potential, family impacts; (2) Voice: agency of children and youth; lived versus no lived experience; (3) One versus Many: disease severity, rarity, equity, unmet need and (4) Health System Governance: funding, implementation inequities, effectiveness and safety. Participants broadly agreed that childhood distinctions, particularly family impacts, justify child-tailored HTA. Dissent arose over whose voice should inform HTA and how such perspectives are best incorporated., Conclusions: Citizens can offer unique insights into criteria relevant to the development or revision of HTA frameworks to capture holistic, societally responsive dimensions of value attached to unique contexts or populations, including children. Balancing the hopes and expectations of patients and caregivers for access to expensive but potential life-altering therapies against the opportunity costs borne by encompassing health systems is a fundamental challenge that will require rigorous methods to elicit, weigh and reconcile varied views., Patient or Public Contribution: A patient advocate served on the steering committee of this study and co-authored this article. Key informants for the Citizen Brief included patient advocates and caregivers; a separate patient advocate reviewed the Brief before dissemination. Qualitative and quantitative data were collected from the general public and caregivers of children, with written consent., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: With the sharp increase in the involvement of patients (including family and informal caregivers) as active participants, collaborators, advisors and decision-makers in health systems, a new role has emerged: the patient partner. The role of patient partner differs from other forms of patient engagement in its longitudinal and bidirectional nature. This systematic review describes extant work on how patient partners are conceptualized and engaged in health systems. In doing so, it furthers the understanding of the role and activities of patient partners, and best practices for future patient partnership activities., Methods: A systematic review was conducted of peer-reviewed literature published in English or French that describes patient partner roles between 2000 and 2021 in any country or sector of the health system. We used a broad search strategy to capture descriptions of longitudinal patient engagement that may not have used words such as "partner" or "advisor"., Results: A total of 506 eligible papers were identified, representing patient partnership activities in mostly high-income countries. These studies overwhelmingly described patient partnership in health research. We identified clusters of literature about patient partnership in cancer and mental health. The literature is saturated with single-site descriptive studies of patient partnership on individual projects or initiatives. There is a lack of work synthesizing impacts, facilitating factors and outcomes of patient partnership in healthcare., Conclusions: There is not yet a consolidated understanding of the role, activities or impacts of patient partners. Advancement of the literature has been stymied by a lack of consistently used terminology. The literature is ready to move beyond single-site descriptions, and synthesis of existing pockets of high-quality theoretical work will be essential to this evolution., (© 2023. The Author(s).)

Objectives: In this study, we (1) identify the terms used to describe the assisted living sector and the legislation governing operation in all Canadian provinces and territories; (2) identify the cost estimates associated with residency in these homes; and (3) quantify the growth of the sector., Design: Environmental scan., Setting and Participants: Internet searches of Canadian provincial and territorial government websites and professional associations were conducted in 2021 to retrieve publicly accessible sources related to the assisted living sector., Methods: We synthesized data that identified the terms used to describe the sector in all provinces and territories, the legislation governing operation, financing, median fees per month for care, and growth of the sector from 2012 to 2020. Counts and proportions were calculated for some extracted variables. All data were narratively synthesized., Results: The terms used to describe the assisted living sector varied across Canada. The terms "assisted living," "retirement homes," and "supportive living" were prevalent. Ontario was the only province to regulate the sector through an independent, not-for-profit organization. Ontario, British Columbia, and Alberta had some of the highest median fees for room, board, and care per month (range: $1873 to $6726). The licensed assisted living sector in Ontario doubled in size (768 in 2020 vs 383 in 2012), and there was a threefold increase in the number of corporate-owned chain assisted living facilities (465 in 2020 vs 142 in 2012)., Conclusions and Implications: The rapid growth of the assisted living sector that is primarily financed through out-of-pocket payments may indicate a rise in a two-tier system of housing and health care for older adults. Policymakers need better mechanisms, such as standardized reporting systems and assessments, to understand the needs of older adults who reside in assisted living facilities and inform the need for sector regulation and oversight., (Copyright © 2022 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: To examine the sociodemographic characteristics, activities, motivations, experiences, skills and challenges of patient partners working across multiple health system settings in Canada., Design: Online cross-sectional survey of self-identified patient partners., Setting: Patient partners in multiple jurisdictions and health system organisations., Participants: 603 patient partners who had drawn on their experiences with the health system as a patient, family member or informal caregiver to try to improve it in some way, through their involvement in the activities of a group, organisation or government., Results: Survey respondents predominantly identified as female (76.6%), white (84%) and university educated (70.2%) but were a heterogeneous group in the scope (activities and organisations), intensity (number of hours) and longevity (number of years) of their role. Primary motivations for becoming a patient partner were the desire to improve the health system based on either a negative (36.2%) or positive (23.3%) experience. Respondents reported feeling enthusiastic (83.6%), valued (76.9%) and needed (63.3%) always or most of the time; just under half felt they had always or often been adequately compensated in their role. Knowledge of the health system and the organisation they partner with are key skills needed. Two-thirds faced barriers in their role with over half identifying power imbalances. Less than half were able to see how their input was reflected in decisions or changes always or most of the time, and 40.3% had thought about quitting., Conclusions: This survey is the first of its kind to examine at a population level, the characteristics, experiences and dynamics of a large sample of self-identified patient partners. Patient partners in this sample are a sociodemographically homogenous group, yet heterogeneous in the scope, intensity and longevity of roles. Our findings provide key insights at a critical time, to inform the future of patient partnership in health systems., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Policy Points In order to achieve successful operationalization of trauma-informed care (TIC), TIC policies must include conceptual clarity regarding the definition of both trauma and TIC. Furthermore, TIC requires clear and cohesive policies that address operational factors such as clearly delineated roles of service providers, protocol for positive trauma screens, necessary financial infrastructure, and mechanisms of intersectoral collaboration. Additionally, policy procedures need to be considered for how TIC is provided at the program and service level as well as what TIC means at the organizational, system, and intersectoral level., Context: Increased recognition of the epidemiology of trauma and its impact on individuals within and across human service delivery systems has contributed to the development of trauma-informed care (TIC). How TIC can be conceptualized and implemented, however, remains unclear. This study seeks to review and analyze the TIC literature from within and across systems of care and to generate a conceptual framework regarding TIC., Methods: Our study followed a critical interpretive synthesis methodology. We searched multiple databases (Campbell Collaboration, Econlit, Health Systems Evidence, Embase, ERIC, HealthSTAR, IPSA, JSTOR, Medline, PsychINFO, Social Sciences Abstracts, Sociological Abstracts and Web of Science),as well as relevant gray literature and information-rich websites. We used a coding tool, adapted to the TIC literature, for data extraction., Findings: Electronic database searches yielded 2,439 results and after inclusion/exclusion criteria were applied, a purposive sample of 98 information-rich articles was generated. Conceptual clarity and definitional understanding of TIC is lacking in the literature, which has led to poor operationalization of TIC. Additionally, infrastructural and ideological barriers, such as insufficient funding and service provider "buy-in," have hindered TIC implementation. The resulting conceptual framework defines trauma and depicts critical elements of vertical TIC, including the bidirectional relationship between the trauma-affected individual and the system, and horizontal TIC, which requires intersectoral collaboration, an established referral network, and standardized TIC language., Conclusions: Successful operationalization of TIC requires policies that address current gaps in systems arrangements, such as the lack of funding structures for TIC, and political factors, such as the role of policy legacies. The emergent conceptual framework acknowledges critical factors affecting operationalization., (© 2022 Milbank Memorial Fund.)

Background: Decentralization of healthcare decision-making in Uganda led to the promotion of public participation. To facilitate this, participatory structures have been developed at sub-national levels. However, the degree to which the participation structures have contributed to improving the participation of vulnerable populations, specifically vulnerable women, remains unclear. We aim to understand whether and how vulnerable women participate in health-system priority setting; identify any barriers to vulnerable women's participation; and to establish how the barriers to vulnerable women's participation can be addressed., Methods: We used a qualitative description study design involving interviews with district decision-makers (n=12), sub-county leaders (n=10), and vulnerable women (n=35) living in Tororo District, Uganda. Data was collected between May and June 2017. The analysis was conducting using an editing analysis style., Results: The vulnerable women expressed interest in participating in priority setting, believing they would make valuable contributions. However, both decision-makers and vulnerable women reported that vulnerable women did not consistently participate in decision-making, despite participatory structures that were instituted through decentralization. There are financial (transportation and lack of incentives), biomedical (illness/disability and menstruation), knowledge-based (lack of knowledge and/or information about participation), motivational (perceived disinterest, lack of feedback, and competing needs), socio-cultural (lack of decision-making power), and structural (hunger and poverty) barriers which hamper vulnerable women's participation., Conclusion: The identified barriers hinder vulnerable women's participation in health-system priority setting. Some of the barriers could be addressed through the existing decentralization participatory structures. Respondents made both short-term, feasible recommendations and more systemic, ideational recommendations to improve vulnerable women's participation. Integrating the vulnerable women's creative and feasible ideas to enhance their participation in health-system decision-making should be prioritized., (© 2022 The Author(s); Published by Kerman University of Medical Sciences This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.)

Background: Exposure to trauma can result in various mental health disorders including anxiety, depression, and posttraumatic stress disorder (PTSD). Although psychotherapies and pharmacotherapies exist for the treatment of these disorders, many individuals fail to receive treatment and among those who do, many remain symptomatic. Therefore, it is critical to continue developing new interventions for traumatic stress that target underlying mechanisms of pathology and offer a safe and acceptable alternative to current treatments. Morning light treatment has good potential as a novel non-invasive, low risk treatment for traumatic stress. Evidence suggests that morning light may improve traumatic stress by reducing reactivity in the amygdala, a brain region implicated in the pathophysiology of PTSD and anatomically linked to circadian photoreceptors in the eye., Methods: In this study, we aim to establish a significant dose-response relationship between duration of morning light treatment and reduction in amygdala reactivity among individuals with traumatic stress symptoms (NCT# 04117347). Using a transdiagnostic approach, sixty-six individuals with a history of a DSM-5 criterion A trauma and traumatic stress symptoms will be recruited to participate in a 5-week study. Participants will be randomized across three treatment arms based on morning light treatment duration: 15-minutes, 30-minutes, or 60-minutes of light treatment per day for four weeks. To evaluate amygdala activity, participants will undergo fMRI at pre-treatment, mid-treatment, and post-treatment. Participants will also complete clinical assessments and self-report measures of PTSD, depression, and anxiety at pre-treatment, mid-treatment, and post-treatment., Discussion: Morning light therapy may be an acceptable, feasible, and effective treatment for individuals suffering from traumatic stress. Identifying mechanistically relevant targets, and the doses needed to impact them, are critical steps in developing this new treatment approach for the sequelae of traumatic stress., Competing Interests: HJB is a consultant for Natrol, LLC, MovingMindz, Pty Ltd and F. Hoffmann-La Roche Ltd. All other authors report no financial or non-financial interests to disclose.

Objectives: Deliberative processes for health technology assessment (HTA) are intended to facilitate participatory decision making, using discussion and open dialogue between stakeholders. Increasing attention is being given to deliberative processes, but guidance is lacking for those who wish to design or use them. Health Technology Assessment International (HTAi) and ISPOR-The Professional Society for Health Economics and Outcomes Research initiated a joint Task Force to address this gap., Methods: The joint Task Force consisted of fifteen members with different backgrounds, perspectives, and expertise relevant to the field. It developed guidance and a checklist for deliberative processes for HTA. The guidance builds upon the few, existing initiatives in the field, as well as input from the HTA community following an established consultation plan. In addition, the guidance was subject to two rounds of peer review., Results: A deliberative process for HTA consists of procedures, activities, and events that support the informed and critical examination of an issue and the weighing of arguments and evidence to guide a subsequent decision. Guidance and an accompanying checklist are provided for (i) developing the governance and structure of an HTA program and (ii) informing how the various stages of an HTA process might be managed using deliberation., Conclusions: The guidance and the checklist contain a series of questions, grouped by six phases of a model deliberative process. They are offered as practical tools for those wishing to establish or improve deliberative processes for HTA that are fit for local contexts. The tools can also be used for independent scrutiny of deliberative processes.

Objectives: To examine post-traumatic stress disorder (PTSD) among Black adults in younger, middle, and older ages. Methods: Using nationally representative data from the National Survey of American Life, we estimated lifetime and 12-month prevalence of PTSD in Black men and women ages 18-34, 35-49, and 50+. We determined PTSD persistence and severity by age group, then associations of PTSD with socio-economic status, chronic stress, and racial discrimination in middle age. Results: The lifetime prevalence of PTSD was higher in Black women/men ages 18-34 (prevalence=14.0%/6.3%) and 35-49 (12.8%/4.6%) versus 50 and older (8.7%/5.1%). Those ages 35-49 were more likely than younger/older Black adults to have severe interference in work, relationships, and activities domains. In middle age, PTSD was associated with unemployment, lower education, poverty, and stress in Black men, and unemployment, divorce, poverty, stress, and discrimination in Black women. Discussion: Black women experience a disproportionate burden of PTSD in middle age.

Objectives: Chronic stressors are associated with cardiometabolic health conditions and disparities. Mechanisms linking stressors and health remain poorly understood. Methods: Two cohort studies (Cardiac Rehabilitation And The Experience [CREATE] and Tracking Risk Identification for Adult Diabetes [TRIAD]) with harmonized variables were used to examine relationships between six types of chronic stressors in adulthood and Hypothalamic-Pituitary-Adrenal (HPA) axis dysregulation, as indicated by blunted diurnal cortisol slopes, which are stress-sensitive biomarkers implicated in cardiometabolic health (merged N = 213, mean age 61, 18% Black). A secondary aim was to explore whether these chronic stressors accounted for Black-White disparities in HPA axis regulation. Results: Some chronic stressors were linked to HPA axis dysregulation, with recent stressors most salient ( b = 0.00353, SE = 0.00133, p = .008). Black-White disparities in HPA axis regulation persisted after controlling for racial differences in chronic stressors, which reduced the disparity 11.46%. Discussion: Chronic stressors in adulthood may increase risk for HPA axis dysregulation and associated cardiometabolic health outcomes but may not be a key factor in racial disparities.

Objectives: To examine anxiety disorders in aging Black adults. Methods: Using nationally representative data from the National Survey of American Life, we estimated lifetime/12-month prevalence of anxiety disorders in Black men and women, age 50+ ( N = 1561). Disorder-specific persistence and severity, functional impairment, and mental health service utilization were investigated using multivariate regressions. Results: Black men and women who met criteria for anxiety disorders (lifetime prevalence=12.4%/18.3% in men/women) also demonstrated persistent disorders (percent meeting criteria = 40.3%-61.2%). Those with a 12-month anxiety disorder (6.2%/10.5% of men/women) typically reported severe task interference (38.3%-85.7%). Those with any 12-month anxiety disorder, compared to those without, experienced greater impairment in days out of role, work, family burden, cognition and, in women, mobility ( p 's < .05). Only 47.0%/65.2% of Black men/women with any lifetime anxiety disorder used mental health services. Discussion: Despite low prevalence, older Blacks with anxiety disorders experience substantial mental health burden in middle age and later.

Background: Because there are no standardized reporting systems specific to residents of retirement homes in North America, little is known about the health of this distinct population of older adults. We evaluated rates of health services use by residents of retirement homes relative to those of residents of long-term care homes and other populations of older adults., Methods: We conducted a retrospective cohort study using population health administrative data from 2018 on adults 65 years or older in Ontario. We matched the postal codes of individuals to those of licensed retirement homes to identify residents of retirement homes. Outcomes included rates of hospital-based care and physician visits., Results: We identified 54 733 residents of 757 retirement homes (mean age 86.7 years, 69.0% female) and 2 354 385 residents of other settings. Compared to residents of long-term care homes, residents of retirement homes had significantly higher rates per 1000 person months of emergency department visits (10.62 v. 4.48, adjusted relative rate [RR] 2.61, 95% confidence interval [CI] 2.55 to 2.67), hospital admissions (5.42 v. 2.08, adjusted RR 2.77, 95% CI 2.71 to 2.82), alternate level of care (ALC) days (6.01 v. 2.96, adjusted RR 1.51, 95% CI 1.48 to 1.54), and specialist physician visits (6.27 v. 3.21, adjusted RR 1.64, 95% CI 1.61 to 1.68), but a significantly lower rate of primary care visits (16.71 v. 108.47, adjusted RR 0.13, 95% CI 0.13 to 0.14)., Interpretation: Residents of retirement homes are a distinct population with higher rates of hospital-based care. Our findings can help to inform policy debates about the need for more coordinated primary and supportive health care in privately operated congregate care homes., Competing Interests: Competing interests: Andrew Costa holds the Schlegel Chair in Clinical Epidemiology in Aging at McMaster University, which was established by a gift by the Schlegel family (who own and operate Schlegel Villages; a chain of long-term care and retirement homes). Andrew Costa and Susan Bronskill have received honoraria from the Canadian Institutes for Health Research Best Brains Exchange on Retirement Homes. Derek Manis was a member of the Board of Directors of The Justice Emmett Hall Memorial Foundation (2018–2021). Paula Rochon holds the RTOERO Chair in Geriatric Medicine at the University of Toronto. No other competing interests were declared., (© 2022 CMA Impact Inc. or its licensors.)

Introduction: The COVID-19 pandemic has had an impact on all aspects of the health system. Little is known about how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings within the health system, changed due to the substantial health system shifts catalysed by the pandemic. This paper reports on the results of a survey that included questions about this topic., Methods: Canadian patient, family and caregiver partners were invited to participate in an online anonymous survey in the Fall of 2020. A virtual snowballing approach to recruitment was used. Survey invitations were shared on social media and emailed to health system and governmental organizations with the request that they share the survey with patient partners. This paper focuses on responses to two questions related to patient partner experiences during the COVID-19 pandemic., Results: The COVID-19 questions were completed by 533 respondents. Over three quarters of respondents (77.9%, n = 415) indicated their patient engagement activities had been impacted by COVID-19. The majority (62.5%, n = 230) experienced at least a temporary or partial reduction in their patient engagement activities. Some respondents did see increases in their patient engagement activities (11.4%, n = 42). Many respondents provided insights into their experience with virtual platforms for engagement (n = 194), most expressed negative or mixed experiences with this shift., Conclusions: This study provides a snapshot of Canadian patient, family and caregiver partners' perspectives on the impact of COVID-19 on their engagement activities. Understanding how engagement unfolded during a crisis is critical for our future planning if patient engagement is to be fully integrated into the health system. Identifying how patient partners were engaged and not engaged during this time period, as well as the benefits and challenges of virtual engagement opportunities, offers instructive lessons for sustaining patient engagement, including the supports needed to engage with a more diverse set of patient, family and caregiver partners., Patient Contribution: Patient partners were important members of the Canadian Patient Partner Study research team. They were engaged from the outset, participating in all stages of the research project. Additional patient partners were engaged to develop and pilot test the survey, and all survey respondents were patient, family or caregiver partners. The manuscript is coauthored by two patient partners., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)