Profiling the medical, functional, cognitive, and psychosocial care needs of adults assessed for home care in Ontario, Canada: The case for long-term 'life care' at home.

Calls to leverage routinely collected data to inform health system improvements have been made. Misalignment between home care services and client needs can result in poor client, caregiver, and system outcomes. To inform development of an integrated model of community-based home care, grounded in a holistic definition of health, comprehensive clinical profiles were created using Ontario, Canada home care assessment data. Retrospective, cross-sectional analyses of 2017-2018 Resident Assessment Instrument Home Care (RAI-HC) assessments (n = 162,523) were completed to group home care clients by service needs and generate comprehensive profiles of each group's dominant medical, functional, cognitive, and psychosocial care needs. Six unique groups were identified, with care profiles representing home care clients living with Geriatric Syndromes, Medical Complexity, Cognitive Impairment and Behaviours, Caregiver Distress and Social Frailty. Depending on group membership, between 51% and 81% of clients had identified care needs spanning four or more Positive Health dimensions, demonstrating both the heterogeneity and complexity of clients served by home care. Comprehensive clinical profiles, developed from routinely collected assessment data, support a future-focused, evidence-informed, and community-engaged approach to research and practice in integrated home-based health and social care.

Implementation of post-discharge malaria chemoprevention (PDMC) in Benin, Kenya, Malawi, and Uganda: stakeholder engagement meeting report.

A Stakeholder engagement meeting on the implementation of post-discharge malaria chemoprevention (PDMC) in Benin, Kenya, Malawi, and Uganda was held in Nairobi, Kenya, on 27 September 2023. Representatives from the respective National Malaria Control Programmes, the World Health Organization (WHO) Geneva, Africa Regional and Kenya offices, research partners, non-governmental organizations, and the Medicines for Malaria Venture participated. PDMC was recommended by the WHO in June 2022 and involves provision of a full anti-malarial treatment course at regular intervals during the post-discharge period in children hospitalized with severe anaemia in areas of moderate-to-high malaria transmission. The WHO recommendation followed evidence from a meta-analysis of three clinical trials and from acceptability, delivery, cost-effectiveness, and modelling studies. The trials were conducted in The Gambia using monthly sulfadoxine-pyrimethamine during the transmission season, in Malawi using monthly artemether-lumefantrine, and in Kenya and Uganda using monthly dihydroartemisinin-piperaquine, showing a significant reduction in all-cause mortality by 77% (95% CI 30-98) and a 55% (95% CI 44-64) reduction in all-cause hospital readmissions 6 months post-discharge. The recommendation has not yet been implemented in sub-Saharan Africa. There is no established platform for PDMC delivery. The objectives of the meeting were for the participating countries to share country contexts, plans and experiences regarding the adoption and implementation of PDMC and to explore potential delivery platforms in each setting. The meeting served as the beginning of stakeholder engagement within the PDMC Saves Lives project and will be followed by formative and implementation research to evaluate alternative delivery strategies in selected countries. Meeting highlights included country consensus on use of dihydroartemisinin-piperaquine for PDMC and expansion of the target group to "severe anaemia or severe malaria", in addition to identifying country-specific options for PDMC delivery for evaluation in implementation research. Further exploration is needed on whether the age group should be extended to school-age children.

"People want better": a qualitative exploration of stakeholders' views on introducing well-being coordinators in the screen industry.

PURPOSE: There are several factors that negatively impact the well-being of those working in the screen industry. Consequently, the need to introduce Well-being Coordinators has been identified. This study explored the experiences of participants who undertook a Well-being Coordination course tailored for the screen sector. Additionally, it sought to delve into perspectives regarding well-being within the screen industry. METHODS: Semi-structured interviews were conducted. The study was guided by an interpretive descriptive approach. Reflexive thematic analysis was used to analyse data. FINDINGS: Five themes were identified: Opportunities and challenges working in the screen industry, co-existing with harassment, the need for change: importance of wellbeing, becoming a well-being co-ordinator: learning from the course, and the future of the well-being co-ordinator role: opportunities and challenges. The reality that cast and crew co-exist with several forms of harassment within the industry was noted. Despite this, there is hope for the future of the screen sector, particularly the positive impact the role of the Well-being Coordinator could have. CONCLUSIONS: The experiences of professionals across the screen industry vary; however, a pervasive culture of bullying and harassment is commonplace. Through the introduction of Well-being Coordinators, there is the potential to enact positive change.

Principles for Stakeholder Engagement in Observational Health Research.

This Viewpoint advocates for the inclusion of patients and other stakeholders in interpreting data for observational research studies.

Overview of the Engagement Process to Develop the Future of Cancer Impact (FOCI) Report in Alberta: The Power of Collective Action.

This commentary provides a detailed overview of the extensive stakeholder engagement efforts critical to the development of the Future of Cancer Impact (FOCI) in Alberta report. The overarching aim of the FOCI report was to support informed and strategic discussions and actions that will help key stakeholders in the province prepare for a future with increasing cancer incidence and survival. Employing a comprehensive approach and a diverse range of engagement activities, insights from a wide spectrum of stakeholders were gathered and subsequently used to shape the content of the report. This inclusive process ensured broad representation of perspectives, contributing to a deeper understanding of the complexities in cancer care. The outcome is a robust, consensus-driven report with recommendations set to drive significant transformations within the healthcare system. These efforts highlight the critical role of extensive, inclusive, and collaborative engagement in shaping healthcare initiatives and advancing discussions crucial for the future of cancer care in Alberta.

Innovative Model for Promoting Interprofessional Dialogue and Action Across Healthcare Stakeholders: The ASAHP Collaborative Stakeholder Engagement Model.

BACKGROUND: The ASAHP established the Clinical Education Task Force (CETF) in 2017 to identify strategies for clinical education. Implementing the CETF recommendations requires continuous collaboration between healthcare industry and academic partners. AIM: ASAHP Regional Summits were planned and implemented to offer an active learning environment for stakeholders, strengthen translational skills, identify gaps in interprofessional collaborative practice (IPC), and create lasting networking opportunities. METHODS: The Regional Summits were organized in a standard format across three hub sites. During a virtual "Harvest" session all sites were video linked to continue the local dialogue on a national level. Outcomes were analyzed using mixed methods, including pre- and post-session surveys quantitative methods. Notes from table discussions were analyzed using a qualitative approach. RESULTS: Qualitative results offered a rich dataset from the industry and academic perspective to provide a better understanding how the CETF recommendations are being understood. Ideas for future action and partnerships were identified. Various regions contributed insights that reflect unique environments. CONCLUSIONS: The ASAHP Collaborative Stakeholder Engagement Model offers a robust and reproducible active adult learning model for IPC that can lead to change and continued engagement. These findings identify opportunities for deepening the connections made through regional hubs.

A community-engaged approach to translate a Vaccine Hesitancy Scale into Haitian Creole.

OBJECTIVE: Accurately translated health materials are needed to achieve equity in vaccine uptake among U.S. individuals with non-English language preferences. Verbatim translations may not capture the cultural and linguistic vernacular required to understand vaccine hesitancy. We leveraged a community-engaged approach to translate the Vaccine Hesitancy Scale (VHS) into Haitian Creole. METHODS: Following the "WHO Guidelines on Translation and Adaptation of Instruments" and a community-engaged framework, a validated 10-question Vaccine Hesitancy Scale (VHS) underwent forward translation, expert panel review, back translation, and focus group pilot testing. RESULTS: Haitian Creole-speaking translators included two community leaders, one community partner, one study team member, and 13 Haitian, greater Boston-based community members who participated in a focus group to pretest the survey. After four iterations, a linguistic and cultural translation of the VHS was created. CONCLUSION: A community-engaged framework strengthened community partnerships and resulted in a culturally relevant Haitian Creole vaccine hesitancy scale.

Stakeholder participation in the COVID-19 pandemic preparedness and response plans: A synthesis of findings from 70 countries.

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.

Barriers and enablers for implementation of digital-linked diagnostics models at point-of-care in South Africa: stakeholder engagement.

The integration of digital technologies holds significant promise in enhancing accessibility to disease diagnosis and treatment at point-of-care (POC) settings. Effective implementation of such interventions necessitates comprehensive stakeholder engagements. This study presents the outcomes of a workshop conducted with key stakeholders, aiming to discern barriers and enablers in implementing digital-connected POC diagnostic models in South Africa. The workshop, a component of the 2022 REASSURED Diagnostics symposium, employed the nominal group technique (NGT) and comprised two phases: Phase 1 focused on identifying barriers, while Phase 2 centered on enablers for the implementation of digital-linked POC diagnostic models. Stakeholders identified limited connectivity, restricted offline functionality, and challenges related to load shedding or rolling electricity blackouts as primary barriers. Conversely, ease of use, subsidies provided by the National Health Insurance, and 24-h assistance emerged as crucial enablers for the implementation of digital-linked POC diagnostic models. The NGT workshop proved to be an effective platform for elucidating key barriers and enablers in implementing digital-linked POC diagnostic models. Subsequent research endeavors should concentrate on identifying optimal strategies for implementing these advanced diagnostic models in underserved populations.

LGBTQ+ Inclusivity Training and Education: A Toolkit for Skilled Nursing Facilities.

OBJECTIVES: The objective of this study was to develop the LGBTQ+ Inclusivity Training and Education (LITE) toolkit and to examine the usability and acceptability of the LITE toolkit to health care workers and staff who work within skilled nursing facilities (SNFs). DESIGN: A community-engaged approach using human-centered design to develop the LITE toolkit. To test the usability and acceptability of the LITE toolkit, we provided a posttest survey to users after a 9-week period. SETTING AND PARTICIPANTS: The LITE toolkit was distributed to 25 SNFs throughout a 7-county area in North Carolina. METHODS: Development processes included an LGBTQ+ community advisory board, development of resource topics and a list of best practices, and development of a website. The LITE toolkit comprised a website of LGBTQ+ resources, poster of 6 Best Practices to LGBTQ+ Care, rainbow lapel pins, and writing pens with the LITE logo. Online surveys were distributed to SNF administrators to share with health care workers and staff to collect data on the usability and acceptability of the LITE toolkit. Descriptive statistics were used for data analysis. RESULTS: Fifteen participants completed the survey. Answering all survey questions was not a requirement. Seventy-nine percent (n = 14) of SNF health care workers indicated that the LITE toolkit was "easy to understand" and that they were satisfied with the contents. Fifty-three percent (n = 15) responded that the LITE toolkit would improve the way they care for patients. Sixty-six percent (n = 15) of health care workers and staff strongly agreed the LITE toolkit was applicable to their job role. CONCLUSIONS AND IMPLICATIONS: Providing useful and acceptable LGBTQ+-focused training and education for members of the SNF community addresses the need for health care worker and staff training to foster equitable care and inclusive environments for the LGBTQ+ older adult community. Additional work focused on understanding the facilitators and barriers to using the LITE toolkit in the SNF setting is needed.

Digital health integration for noncommunicable diseases: Comprehensive process mapping for full-life-cycle management.

AIM: To create a systematic digital health process mapping framework for full-life-cycle noncommunicable disease management grounded in key stakeholder engagement. METHODS: A triphasic, qualitative methodology was employed to construct a process mapping framework for digital noncommunicable disease management in Shanghai, China. The first phase involved desk research to examine current guidance and practices. In the second phase, pivotal stakeholders participated in focus group discussions to identify prevalent digital touchpoints across lifetime noncommunicable disease management. In the final phase, the Delphi technique was used to refine the framework based on expert insights and obtain consensus. RESULTS: We identified 60 digital touchpoints across five essential stages of full-life-cycle noncommunicable disease management. Most experts acknowledged the rationality and feasibility of these touchpoints. CONCLUSIONS: This study led to the creation of a comprehensive digital health process mapping framework that encompasses the entire life cycle of noncommunicable disease management. The insights gained emphasize the importance of a systemic strategic, person-centered approach over a fragmented, purely technocentric approach. We recommend that healthcare professionals use this framework as a linchpin for efficient disease management and seamless technology incorporation in clinical practice.

Place branding: Religion in shaping the three-dimensional essence of a city brand through stakeholder engagement.

This study explores the role of religion in engaging stakeholders in branding a place on social media and unmasks what implications this has for (re)constructing the three-dimensional meanings of a place brand. Using the content analysis method to examine the case of Saudi Arabia, it probes how the key stakeholder groups of the government and the residents structure and interact with the narratives of the cities-Jeddah and Riyadh-on Twitter, Facebook, and Instagram. The results show the Islamic religion serves as a powerful tool for motivating the residents to engage in the government-led city branding initiatives at the individual level. However, the strategy of dwelling on religion to mobilize resident engagement at the individual level towards the social level with the aim of growing resources in support of social development should be reassessed within a dynamic social system. Theoretically, the proposed framework of religion city branding expands the scope of stakeholder engagement in place branding research through the integration with the driver of religion, especially unveiling how religious factors shape the personality traits of a place brand. It contributes to the practical sense that religious elements might be deployed by the key stakeholder groups of the government and residents in city branding initiatives, which potentially contributes to their relationship and the engagement of residents in co-creating a place brand with the government. This Saudi-focused study, therefore, possesses significance for place branding practices in Middle Eastern countries and beyond.

Stakeholder Engagement in Type 1 Diabetes Research, Quality Improvement, and Clinical Care.

The integration of stakeholder engagement (SE) in research, quality improvement (QI), and clinical care has gained significant traction. Type 1 diabetes is a chronic disease that requires complex daily management and care from a multidisciplinary team across the lifespan. Inclusion of key stakeholder voices, including patients, caregivers, health care providers and community advocates, in the research process and implementation of clinical care is critical to ensure representation of perspectives that match the values and goals of the patient population. This review describes the current framework for SE and its application to research, QI, and clinical care across the lifespan.

Understanding the Technical Implementation of a Clinical Decision Support SmartApp: A Qualitative Analysis.

CONCERN is a SmartApp that identifies patients at risk for deterioration. This study aimed to understand the technical components and processes that should be included in our Implementation Toolkit. In focus groups with technical experts five themes emerged: 1) implementation challenges, 2) implementation facilitators, 3) project management, 4) stakeholder engagement, and 5) security assessments. Our results may aid other teams in implementing healthcare SmartApps.

Participatory Process Anchored in Systems Thinking for Implementing Ethics in Medical AI: A Qualitative Study.

Implementing ethics is a complex issue and should engage stakeholders. Yet, ensuring a fair, transparent, and meaningful participatory process contributes to the complexity. This qualitative study explores how to engage with stakeholders about a COVID-19 AI app following principles of Critical Systems Thinking. The study is set to explore both process and outcomes of stakeholder engagement and draw recommendations for both.

Racial and ethnic inequities in stillbirth in the US: Looking upstream to close the gap: Seminars in Perinatology.

Though stillbirth rates in the United States improved over the previous decades, inequities in stillbirth by race and ethnicity have persisted nearly unchanged since data collection began. Black and Indigenous pregnant people face a two-fold greater risk of experiencing the devastating consequences of stillbirth compared to their White counterparts. Because race is a social rather than biological construct, inequities in stillbirth rates are a downstream consequence of structural, institutional, and interpersonal racism which shape a landscape of differential access to opportunities for health. These downstream consequences can include differences in the prevalence of chronic health conditions as well as structural differences in the quality of health care or healthy neighborhood conditions, each of which likely plays a role in racial and ethnic inequities in stillbirth. Research and intervention approaches that utilize an equity lens may identify ways to close gaps in stillbirth incidence or in responding to the health and socioemotional consequences of stillbirth. A community-engaged approach that incorporates experiential wisdom will be necessary to create a full picture of the causes and consequences of inequity in stillbirth outcomes. Investigators working in tandem with community partners, utilizing a combination of qualitative, quantitative, and implementation science approaches, may more fully elucidate the underpinnings of racial and ethnic inequities in stillbirth outcomes.

Stakeholder Engagement to Identify Implementation Strategies to Overcome Barriers to Delivering Chronic Pain Treatments: A NIDILRR and VA TBI Model Systems Collaborative Project.

OBJECTIVE: The purpose of this article is to illustrate the process of stakeholder-engaged intervention mapping approach to identify implementation strategies to overcome data-driven prioritized barriers to receiving chronic pain services for persons with traumatic brain injury (TBI). SETTING: Community. PARTICIPANTS: Healthcare providers (n = 63) with 2 or more years' experience treating persons with TBI, interviewed between October 2020 and November 2021 provided data for identification of barriers. TBI, chronic pain, and qualitative research subject matter experts (SMEs) participated in the mapping approach. DESIGN: Participatory-based research design, using descriptive and intervention mapping approaches. RESULTS: Four barriers to accessing chronic pain treatment by persons with TBI which emerged from provider interviews were prioritized for intervention mapping: cognitive deficits of patients (67%); patient comorbidities (63%); mental health and/or substance abuse issues (59%); and patient participation (62%). SMEs used prioritized barriers to develop 4 primary objectives and implementation strategies designed to: (1) engage consumers to validate and identify strategies; (2) tailor pain treatment and delivery to overcome barriers; (3) develop and disseminate guidelines and best practices when delivering care to persons with TBI to support spread; and (4) increase awareness, skills, and readiness of workforce to deliver pain treatment to persons with TBI. SMEs used an evidence-based approach to develop a mapping matrix of the prioritized barriers, implementation objectives, and aligned implementation strategies to impact change. CONCLUSION: Implementation science is needed to facilitate knowledge translation into practice for this complex population to overcome barriers to care. Implementation strategies to address barriers to accessing chronic pain care for individuals with TBI were chosen through a participatory approach to engaging SMEs to support these rehabilitation implementation efforts. Future work includes gathering input from individuals with TBI and chronic pain and to move the intervention (implementation) mapping matrix forward to inform future implementation research, policy, and practice.

A Model of Stakeholder Engagement with American Indians and Alaska Natives from the Native-CHART Study.

American Indian (AI) and Alaska Native (AN) community stakeholder engagement has the power to transform health research. However, the engagement and dissemination process is challenging in AIAN communities due to the historical and current negative experiences of AIAN populations in health research (Dillard et al., 2018). Whereas there is a paucity of recommendations about how to engage stakeholders in health research, from agenda-setting to proposal development, study design, recruitment, data collection, analysis, results, and dissemination (Concannon et al., 2014), there is limited information about how these recommendations are operationalized within the context of AIAN health research and practice (Concannon et al., 2014; Forsythe et al., 2016). For the purposes of this article, stakeholders are individuals, organizations, or communities who have a direct interest in the process and outcomes of a project, research, or policy effort (Boaz et al., 2018). Stakeholder engagement is a systematic process involving stakeholders, which provides opportunities for consultation, input, reviews, reactions, support, and assistance with dissemination. Dissemination focuses on how, when, by whom, and under what circumstances evidence spreads throughout agencies, organizations, states, counties, communities, tribes, researchers, policy makers, and service organizations.

Multistakeholder Perceptions of Additional Value Elements for United States Value Assessment of Health Interventions.

OBJECTIVES: Limitations in conventional cost-effectiveness methods have led to calls for incorporation of additional value elements in assessments of health technologies. However, gaps remain in how additional value elements may inform decision making. This study aimed to prioritize additional value elements from the perspective of healthy individuals without a specific condition or indicated for a specific treatment in the United States among a multistakeholder panel and compare the importance of perspective-specific value elements. METHODS: Additional value elements were prioritized in 2 phases: (1) we identified and categorized additional value elements in a targeted literature review, and (2) we convened a multistakeholder group-based preference elicitation study (N = 28) to evaluate the description of each value element and rank and generate normalized weights of each value element for its significance in value assessment. The importance of additional value elements was also weighted relative to patient-centric value elements. RESULTS: The rank and weight of contextual value elements among 28 stakeholders were "severity of the disease" (26.2%), "disadvantaged and vulnerable target populations highly represented" (21.8%), "broader economic impact" (17.3%), "risk protection" (13.8%), "rarity of the disease" (11.3%), and "novel mechanism of action" (9.7%). Relative weight of the additional value elements versus patient-centric value elements was 52% and 48%, respectively. CONCLUSIONS: Study findings may inform priority setting for value frameworks and emerging US government assessments. The group-based elicitation method is repeatable and useful for structured deliberative processes in value assessment and may help improve the consistency and predictability of what is important to stakeholders.

Successful implementation of a stakeholder engagement program for pharmacoepidemiologic research.

PURPOSE: Rigorously conducted pharmacoepidemiologic research requires methodologically complex study designs and analysis yet evaluates problems of high importance to patients and clinicians. Despite this, participation in and mechanisms for stakeholder engagement in pharmacoepidemiologic research are not well-described. Here, we describe our approach and lessons learned from engaging stakeholders, of varying familiarity with research methods, in a rigorous multi-year pharmacoepidemiologic research program evaluating the comparative effectiveness of diabetes medications. METHODS: We recruited 5 patient and 4 clinician stakeholders; each was compensated for their time. Stakeholders received initial formal training in observational research and pharmacoepidemiologic methods sufficient to enable contribution to the research project. After onboarding, stakeholder engagement meetings were held virtually, in the evening, 2-3 times annually. Each was approximately 90 min and focused on 1-2 specific questions about the project, with preparatory materials sent in advance. RESULTS: Stakeholder meeting attendance was high (89%-100%), and all stakeholders engaged with the research project, both during and between meetings. Stakeholders reported positive experiences with meetings, satisfaction, and interest in the research project and its findings, and dedication to the success of the project's goals. They affirmed the value of receiving materials to review in advance and the effectiveness of a virtual platform. Their contributions included prioritizing and suggesting research questions, optimizing written evidence briefs for a lay audience, and guidance on broader topics such as research audience and methods of dissemination. CONCLUSIONS: Stakeholder engagement in pharmacoepidemiologic research using complex study designs and analysis is feasible, acceptable, and positively impacts the research project.