Ending "domestic helicopter research".

"Helicopter research" refers to a practice where researchers from wealthier countries conduct studies in lower-income countries with little involvement of local researchers or community members. This practice also occurs domestically. In this Commentary, we outline strategies to curb domestic helicopter research and to foster equity-centered collaborations.

Consumer and community involvement in preventive health: current insights and considerations for future best practice.

Consumer and community involvement (CCI) in preventive research and health initiatives is not only encouraged but is expected within a rapidly evolving landscape across health policy, practice and research. Here, we summarise the fundamental principles of CCI, as well as outline the barriers and current developments in working towards best practices at organisational and systems levels. CCI stands at a critical juncture. Best practice emphasises meaningful partnerships with consumers and communities to deliver impactful research and prevention activities, yet complex challenges and systematic barriers remain. We need further evidence to demonstrate both 'what' and 'how' CCI should be best implemented in these settings. We present key considerations for researchers, organisations and systems to catalyse the transition of CCI from mere recognition of its importance to pragmatic and optimum implementation and, ultimately, to systemic reform. These include changes to capacity building, funding structures, equitable engagement and transparent evaluation. These must be underpinned by evidence-based approaches, partnership, trust and broad consensus processes to achieve meaningful and impactful CCI in research and healthcare improvement through a lens of inclusivity.

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.

Using GPS and Self-Report Data to Examine the Relationship Between Community Mobility and Community Participation Among Autistic Young Adults.

IMPORTANCE: Community participation of autistic adults is important for health and well-being. Many clinical efforts and interventions aim to enhance community participation in this population. OBJECTIVE: To empirically examine the relationship between community participation and community mobility. DESIGN: A randomized controlled trial using data from baseline and 4- to 6-wk follow-up. SETTING: Community organizations serving autistic adults in Philadelphia. PARTICIPANTS: Sixty-three autistic young adults with data on community mobility and participation from a prior study on public transportation use. OUTCOMES AND MEASURES: Participants were tracked with GPS-enabled cell phones over a 2-wk period. A spatiotemporal data mining algorithm was used to compute the total number of destinations, nonhome destinations, unique destinations, percentage of time spent outside the home, and median daily activity space area from the GPS data. The Temple University Community Participation measure was used to collect self-report data in 21 different areas, and total amount, breadth, and sufficiency of participation were calculated. RESULTS: Moderate and statistically significant associations were found between community mobility and participation variables at baseline and follow-up. However, changes in community mobility were not related to changes in community participation. CONCLUSION: Health policymakers and providers should consider community mobility as a factor that can affect community participation in autistic individuals. Plain-Language Summary: Lower levels of community participation among autistic young adults affect health outcomes and overall quality of life. Community mobility is often a barrier to community participation. An understanding of the relationship between community mobility and community participation can lead to occupational therapists tailoring specific interventions and policies that support autistic young adults to engage in important life activities within the community.

Decision analysis of PPP project's parties based on deep consumer participation.

Although PPP(Public-private partnership) mode has been applied for a long time in infrastructural project, the success rate is not very high. The sustainability of PPP projects is still influenced by many factors. In order to examine the evolutionary stable strategies (ESSs) of social capital, government, and paying consumers, a tripartite evolutionary game model is established in this work. In order to further promote consumer participation, it is necessary to make the assumption that customer oversight and review can have an impact on service prices. The results show: i)The strategy choice of consumer depends on the comparison between supervision cost of consumer and price coefficient for consumer to social capital. ii)Consumer supervision can promote the provision of high-quality services by social capital. iii)The difference between high-quality cost and low-quality cost, subsidy coefficient, price coefficient and supervision cost of consumer are critical factors influencing both evolutionary results and trajectories. This paper also puts forward policy implications for the three stakeholders to promote social capital's high-quality strategy so as to maintain the sustainability of PPP projects.

Implementation of a strengths-based approach in a traumatic brain injury community service; perspectives of community workers.

Background The strengths-based approach (SBA) was initially developed for people living with mental health issues but may represent a promising support option for community participation of people living with a traumatic brain injury (TBI). A community-based organisation working with people living with TBI is in the process of adapting this approach to implement it in their organisation. No studies explored an SBA implementation with this population. This study explores the implementation of key components of the SBA in a community-based organisation dedicated to people living with TBI. Methods A qualitative descriptive design using semi-structured interviews (n = 10) with community workers, before and during implementation, was used. Transcripts were analysed inductively and deductively. Deductive coding was informed by the SBA fidelity scale. Results Group supervision and mobilisation of personal strengths are key SBA components that were reported as being integrated within practice. These changes led to improved team communication and cohesiveness in and across services, more structured interventions, and greater engagement of clients. No changes were reported regarding the mobilisation of environmental strengths and the provision of individual supervision. Conclusion The implementation of the SBA had positive impacts on the community-based organisation. This suggests that it is valuable to implement an adaptation of the SBA for people living with TBI.

Prescribed safer supply during dual public health emergencies: a qualitative study examining service providers perspectives on early implementation.

BACKGROUND: Within North America and worldwide, drug related overdoses have increased dramatically over the past decade. COVID-19 escalated the need for a safer supply to replace unregulated substances and to reduce toxicity and overdoses. Service providers play an integral role in the delivery of safer supply but there is little empirical evidence that conceptualizes effective safer supply from their perspectives. This study explored early implementation and impacts of a safer supply program, capturing the perspectives of an interdisciplinary team of service providers on tensions and issues encountered in the development of the SAFER program. METHODS: Using a community-based participatory approach, we conducted individual interviews with program providers (n = 9). The research team was composed of researchers from a local drug user organization, a local harm reduction organization, and academic researchers. The Consolidated Framework for Implementation Research (CFIR) informed the interview guide. Data was analyzed using thematic analysis. RESULTS: There are six themes describing early implementation: (1) risk mitigation prescribing as context for early implementation; (2) developing SAFER specific clinical protocols; (3) accessibility challenges and program innovations; (4) interdisciplinary team and wraparound care; (5) program tensions between addiction medicine and harm reduction; (6) the successes of safer supply and future visions. CONCLUSION: Early implementation issues and tensions included prescriber concerns about safer supply prescribing in a highly politicized environment, accessibility challenges for service users such as stigma, encampment displacement, OAT requirements, program capacity and costs, and tensions between addiction medicine and harm reduction. Navigating these tensions included development of clinical protocols, innovations to reduce accessibility challenges such as outreach, wraparound care, program coverage of medication costs and prescribing safer supply with/without OAT. These findings contribute important insights for the development of prescribed safer supply programs.

"They didn't think we'd do it!": Community gardening as an act of resistance for people with dementia.

People living with dementia commonly report negative experiences such as disempowerment, stigma, and oppression. Community gardening has demonstrated its potential as a forum for the practice of resistance against the oppressions experienced by other marginalised groups; however, this element of the experience of community gardening has yet to be explored in the context of dementia. A collaboratively-designed community gardening project took place over six weeks, involving six people with dementia. The participants selected all activities undertaken in the garden. Data were collected through semi-structured group interviews with the gardeners and researcher observations. Context-setting semi-structured individual interviews were conducted with four day centre staff members, and three key informants who had experienced working with people with dementia in the garden. The garden acted as a platform for the articulation of both verbal and embodied expressions of resistance against the disempowerment and loss of agency experienced by many people with dementia. The participatory design of the gardening sessions enabled the gardeners to assert their autonomy and independence, and defy the negative stereotypes associated with dementia, which some of the group members appeared to have internalised. Community gardening activities may offer a forum for expressions of resistance against the structures oppressing individuals with dementia. However, in order for this potential to be unlocked, such initiatives must be collaboratively designed, following an approach which recognises the strengths and enduring abilities of people living with dementia. Additionally, the empowering impact of community gardening should not be diluted by positioning the activity as a substitute for adequate statutory health and social care provision, thereby individualising responsibility for the wellbeing of people with dementia.

Citizen science and social innovation as citizen empowerment tools to address urban health challenges: The case of the urban health citizen laboratory in Barcelona, Spain.

Urban health faces significant challenges due to the rapid growth of cities and the concentration of population in urban settings that have a strong impact on people's health. The approach to characterize and address these challenges requires increased societal involvement and interdisciplinary solutions to ensure their effectiveness and democratic nature. With this purpose, it is necessary to explore methodologies for citizen participation that foster a critical understanding of the environment and promote their active role in generating scientific knowledge and change. This article describes the creation of a collaborative space for experimentation and learning that, through the intersection of citizen science and social innovation, aims to engage citizens in the research and diagnosis of their local environment, as well as in the design and implementation of local solutions, while raising awareness about the main challenges to urban health. Through a collaborative and participatory framework, the community identified relevant challenges to urban health they wanted to investigate, co-designed and developed the methodology for data collection and analysis, and ultimately, they devised, designed, and implemented innovative solutions based on the scientific evidence obtained. The framework and results of this project hold potential interest for the scientific community, facilities, institutions, and society by offering an innovative and participatory approach to addressing the present and future urban health challenges.

Building citizen science intelligence for outbreak preparedness and response: a mixed-method study in nine countries to assess knowledge, readiness and feasibility.

INTRODUCTION: Citizen science (CS) is an emerging approach in public health to harness the collective intelligence of individuals to augment traditional scientific efforts. However, citizens' viewpoint, especially the hard-to-reach population, is lacking in current outbreak-related literature. We aim to understand the awareness, readiness and feasibility of outbreak-related CS, including digitally enabled CS, in low-income and middle-income countries. METHODS: This mixed-method study was conducted in nine countries between October 2022 and June 2023. Recruitment through civil society targeted the general population, marginalised/indigenous groups, youth and community health workers. Participants (aged ≥18 years) completed a quantitative survey, and a subset participated in focus group discussions (FGDs). RESULTS: 2912 participants completed the survey and 4 FGDs were conducted in each country. Incorporating participants' perspectives, CS is defined as the practice of active public participation, collaboration and communication in all aspects of scientific research to increase public knowledge, create awareness, build trust and facilitate information flow between citizens, governments and scientists. In Bangladesh, Indonesia, the Philippines, Cameroon and Kenya, majority were unaware of outbreak-related CS. In India and Uganda, majority were aware but unengaged, while in Nepal and Zimbabwe, majority participated in CS before. Engagement approaches should consider different social and cultural contexts, while addressing incentivisation, attitudes and practicality factors. Overall, 76.0% expressed interest in digital CS but needed training to build skills and confidence. Digital CS was perceived as convenient, safer for outbreak-related activities and producing better quality and quantity of data. However, there were concerns over non-inclusion of certain groups, data security and unclear communication. CONCLUSION: CS interventions need to be relatable and address context-specific factors influencing CS participation. Digital CS has the potential to facilitate collaboration, but capacity and access issues must be considered to ensure inclusive and sustainable engagement.

Factors influencing public participation behavior relating to government microblogs on COVID-19 updates.

Introduction: During the global COVID-19 pandemic, densely populated megacities engaged in active international exchanges have faced the most severe impacts from both the disease and the associated infodemic. This study examines the factors influencing public participation behavior on government microblogs in these megacities during the pandemic. It guides megacities in disseminating epidemic information, promoting knowledge on epidemic prevention, managing public opinion, and addressing related matters. Methods: Utilizing the elaboration likelihood model's central and peripheral routes, drawing on an empirical analysis of 6,677 epidemic-related microblogs from seven Chinese megacities, this study analyses the influence mechanisms influencing public participation behavior and reveals the regulatory role of confirmed case numbers. Meanwhile,a qualitative comparative analysis examines and discusses diferent confgurations of ixn fuential factors. Results: The study reveals that microblog content richness demonstrates a U-shaped impact on public participation behavior. Conversely, content interaction, content length, and the number of fans positively impact participation, while update frequency has a negative impact. Additionally, the number of new confrmed cases positively regulates the impact of microblog content and publisher characteristics on public participation behavior. Public participation behavior also varies based on publishing time and content semantic features. This study further revealed the different confgurations of influential factors by QCA method. Conclusion: This study reveals the impact mechanism of the microblog content and publisher characteristics on public participation behavior. It also demonstrates the regulatory role of newly confrmed cases in the way content and publishers' characteristics influence public participation behavior. This study is of great significance for the operation of government microblogs, the release of emergency information, and the promotion of public participation.

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.

Parent coaching to enhance community participation in young children with developmental disabilities: A pilot randomized controlled trial.

BACKGROUND: Parent coaching emerges as a preferred approach for enhancing performance and participation of children with developmental disabilities (DD), but limited clinical trials examine its effects on community participation. AIM: To evaluate whether parent coaching, specifically using Occupational Performance Coaching (OPC), enhances community participation among young children with DD. METHOD AND PROCEDURES: A pilot double-blind randomized controlled trial was conducted. Parents of 50 children with DD (31 male, 19 female, mean age 4 years 10 months) were randomly assigned to the OPC group (n = 25) or parent consultation group (n = 25). Each parent received a maximum of eight coaching sessions or consultations. The primary outcome was children's community participation as assessed through parent-report measures at baseline, pre-intervention, post-intervention, and an 8-week follow-up. OUTCOMES AND RESULTS: Both groups showed significant improvements in parent-identified, goal-specific community participation after the intervention (mean difference [MD]=2.26-2.56), and these improvements were sustained during the follow-up. Despite a trend favoring parent coaching, the group difference in the improvements was not evident (MD=0.18-0.28). Both groups displayed positive improvements in children's overall community involvement post-intervention (MD=0.32); however, the time effects were not statistically significant. CONCLUSIONS AND IMPLICATIONS: OPC, by coaching parents, could enhance goal-specific community participation in children with DD, producing effects similar to those achieved through parent consultation.

Mirai Chatterjee: community action for women's health equity.

Mirai Chatterjee talks to Fid Thompson about overcoming inequity and tackling the social determinants of health impacting female informal sector workers through collective action.

Sustainable political commitment is necessary for institutionalizing community participation in health policy-making: Insights from Iran.

BACKGROUND: Community participation is currently utilized as a national strategy to promote public health and mitigate health inequalities across the world. While community participation is acknowledged as a civic right in the Constitution of Iran and other related upstream documents, the government has typically failed in translating, integrating and implementing community participation in health system policy. The present study was conducted to determine the level of public voice consideration within the health policy in Iran and address fundamental interventions required to promote the public voice in the context of Islamic Republic of Iran (IRI). This study has originality because there is no study that addresses the requirements of institutionalizing community participation especially in low-middle-income countries, so Iran's experience can be useful for other countries. METHODS: Methodologically, this study utilized a multi-method and multi-strand sequential research design, including qualitative, comparative and documentary studies. In the first phase, the current level of community participation in the health policy cycle of Iran was identified using the International Association for Public Participation (IAP2) spectrum. In the second phase, a comparative study was designed to identify relevant interventions to promote the community participation level in the selected countries under study. In the third phase, a qualitative study was conducted to address the barriers, facilitators and strategies for improving the level of public participation. Accordingly, appropriate interventions and policy options were recommended. Interventions were reviewed in a policy dialogue with policy-makers and community representatives, and their effectiveness, applicability and practical feasibility were evaluated. RESULTS: Based on the IAP2 spectrum, the level of community participation in the health policy-making process is non-participation, while empowerment is set at the highest level in the upstream documents. Moreover, capacity-building, demand, mobilization of the local population, provision of resources and setting a specific structure were found to be among the key interventions to improve the level of community participation in Iran's health sector. More importantly, "political will for action" was identified as the driving force for implementing the necessary health interventions. CONCLUSIONS: To sum up, a paradigm shift in the governing social, economic and political philosophy; establishing a real-world and moral dialogue and communication between the government and the society; identifying and managing the conflicts of interest in the leading stockholders of the healthcare system; and, more importantly, maintaining a stable political will for action are integral to promote and institutionalize participatory governance in the health sector of Iran. All of the above will lead us to scheme, implement and institutionalize suitable interventions for participatory governance in health and medicine.

Co-construire un projet de recherche en oncologie avec les personnes concernées : retour d'expérience et leçons apprises.

Citizen participation in cancer research is growing intensively. In this context, the IMPAQT research project aims to promote the participation of (former) cancer patients in all stages of research. It was in response to the needs of the patient-researchers of the IMPAQT research group that the Perce-Neige project was developed. Based on the principles of community participation and collaboration, this project has a dual objective: methodological, aimed at understanding collaboration and characterizing the community approach, and empirical, which concerns caregivers’ perceptions of cognitive disorders related to cancer treatments. All the methodological tools aimed at meeting these objectives were co-constructed by the entire IMPAQT group. The research participation of the people concerned enables a novel way of linking expert and experiential knowledge and necessitates specific modes of organization. Also, the co-construction of research and methodological tools requires a regular updating of knowledge, as well as a capacity for reflection and an openness to reconsidering the approach. It also appears that the mobilization of the people concerned, who possess experiential knowledge, raises emotional issues. In conclusion, the participation of the people concerned in research constitutes an essential lever in the identification, elaboration, and social and psychosocial contextualization of health issues in cancerology.

Community engagement approaches for malaria prevention, control and elimination: a scoping review.

INTRODUCTION: Globally malaria programmes have adopted approaches to community engagement (ACE) to design and deliver malaria interventions. This scoping review aimed to understand, map, and synthesise intervention activities guided by ACE and implemented by countries worldwide for the prevention, control and elimination of malaria. METHODS: Three databases (Web of Science, Proquest, and Medline) were searched for peer-reviewed, primary studies, published in English between 1 January 2000 and 31 December 2022. Advanced Google was used to search for grey literature. The five levels of the International Association for Public Participation were used to categorise ACE - (1) Inform, (2) Consult, (3) involve, (4) Collaborate, and (5) Co-lead. Intervention activities were categorised as health education (HE), and/or health services (HS), and/or environmental management (EM). Outcomes were collected as knowledge, attitude, behaviour, help-seeking, health and HS and environment. Enablers and barriers were identified. Malaria intervention phases were categorised as (1) prevention (P), or (2) control (C), or (3) prevention and control (PC) or prevention, control and elimination (PCE). RESULTS: Seventy-five studies were included in the review. Based on ACE levels, most studies were at the inform (n=37) and involve (n=26) level. HE (n=66) and HS (n=43) were the common intervention activities. HE informed communities about malaria, its prevention and vector control. EM activities were effective when complemented by HE. Community-based HS using locally recruited health workers was well-accepted by the community. Involvement of local leaders and collaboration with local stakeholders can be enablers for malaria intervention activities. CONCLUSION: Involving local leaders and community groups in all stages of malaria prevention programmes is vital for successful interventions. Key elements of successful ACE, that is, consult, collaborate, and co-lead were under-represented in the literature and require attention. National programes must consult and collaborate with community stakeholders to develop ownership of the interventions and eventually co-lead them.