Search

Recruitment is a bottleneck for research - especially digital health studies. Studies often focus on those who are easy to reach or already engaged in their health, leaving those who are uninterested or un-engaged, as "un-reached". This contributes to the "digital divide". COVID-19 restrictions made recruitment more difficult. During a virtual workshop of our peers, we discussed recruitment of un-reached groups for digital health studies, especially during COVID-times. All agreed; we need to go where the un-reached are by collaborating with community-based services and organizations.

Competing Interests: Competing interests: Simon Denegri is an employee of the Academy of Medical Sciences and Bella Starling is an employee of Vocal; both of these institutions funded the DIVOC91 comic that involved young people in understanding and communicating COVID-19 research to their age group. Bella Starling heads a team funded by the National Institute for Health Research and Wellcome Trust. She has received consultant fees for development of the International COVID-19 Data Alliance patient and public involvement and engagement strategy. Bella Starling is also the Chair of the Nuffield Council on Bioethics Enquiry into the Future of Ageing and a trustee of the Society for Neuroacanthocytosis. No other competing interests were declared.

Pacific Islanders are the second fastest-growing population in the United States; however, Pacific Islanders, and Marshallese specifically, are underrepresented in health research. A community-based participatory research (CBPR) approach was used to engage Marshallese stakeholders and build an academic-community research collaborative to conduct health disparities research. Our CBPR partnership pilot tested a multicomponent consent process that provides participants the option to control the use of their data. Consent forms used concise plain language to describe study information, including participant requirements, risks, and personal health information protections, and were available in both English and Marshallese. This study demonstrates that when provided a multicomponent consent, the vast majority of consenting study participants (89.6%) agreed to all additional options, and only five (10.4%) provided consent for some but not all options. Our description of the development and implementation of a multicomponent consent using a CBPR approach adds a specific example of community engagement and may be informative for other indigenous populations.

Purpose: This qualitative study examined fiscal and administrative (i.e., pre- and post-award grants process) barriers and facilitators to community-engaged research among stakeholders across 4 Clinical and Translational Science Awards (CTSA) institutions., Method: A purposive sample of 24 key informants from 3 stakeholder groups-community partners, academic researchers, and research administrators-from the CTSA institutions at the University of North Carolina at Chapel Hill, Medical University of South Carolina, Vanderbilt University Medical Center, and Yale University participated. Semistructured interviews were conducted in March-July 2018, including questions about perceived challenges and best practices in fiscal and administrative processes in community-engaged research. Transcribed interviews were independently reviewed and analyzed using the Rapid Assessment Process to facilitate key theme and quote identification., Results: Community partners were predominantly Black, academic researchers and research administrators were predominantly White, and women made up two-thirds of the overall sample. Five key themes were identified: level of partnership equity, partnership collaboration and communication, institutional policies and procedures, level of familiarity with varying fiscal and administrative processes, and financial management expectations. No stakeholders reported best practices for the institutional policies and procedures theme. Cross-cutting challenges included communication gaps between stakeholder groups; lack of or limits in supporting community partners' fiscal capacity; and lack of collective awareness of each stakeholder group's processes, procedures, and needs. Cross-cutting best practices centered on shared decision making and early and timely communication between all stakeholder groups in both pre- and post-award processes., Conclusions: Findings highlight the importance of equitable processes, triangulated communication, transparency, and recognizing and respecting different financial management cultures within community-engaged research. This work can be a springboard used by CTSA institutions to build on available resources that facilitate co-learning and discussions between community partners, academic researchers, and research administrators on fiscal readiness and administrative processes for improved community-engaged research partnerships., (Copyright © 2020 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Association of American Medical Colleges.)

The use of Participatory Epidemiology in veterinary research intends to include livestock keepers and other local stakeholders in research processes and the development of solutions to animal health problems, including potentially zoonotic diseases. It can also be an attempt to bring some of the methods and insights of social science into a discipline largely shaped by natural science methods and ways of seeing the world. The introduction of participatory methodologies to veterinary epidemiology and disease surveillance follows a wider movement in development thinking, questioning the top-down nature of much post-second world war development efforts directed from the Global North towards the Global South. In the best cases, participatory methods can help to empower the poor and marginalised to participate in and have some control over research and interventions which affect them. Compiled from experience in multi-disciplinary One Health projects, this paper briefly traces the rise of participatory epidemiology before examining some of the limitations observed in its implementation and steps that might be taken to alleviate the problems observed. The three areas in which the operationalisation of Participatory Epidemiology in veterinary and One Health research could be improved are identified as: broadening the focus of engagement with communities beyond quantitative data extraction; taking note of the wider power structures in which research takes place, and questioning who speaks for a community when participatory methods are used. In particular, the focus falls on how researchers from different disciplines, including veterinary medicine and the social sciences, can work together to ensure that participatory epidemiology is employed in such a way that it improves the quality of life of both people and animals around the world., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Background: Sleeping habits have been reported to be associated with diabetes mellitus. This study aimed to explore the relationship of sleep efficiency with diabetes mellitus in individuals with or without sleep-disordered breathing based on polysomnography records., Methods: We enrolled participants from the Sleep Heart Health Study. Objective indicators of sleep characteristics including sleep efficiency, sleep latency, slow-wave sleep, wake after sleep onset, and total arousal index were monitored via in-home polysomnography. Sleep efficiency was divided into grade 1 (≥85%), grade 2 (80%-84.9%), and grade 3 (<80%). Multivariate logistic regression models were utilized to investigate the association between sleep quality and diabetes mellitus., Results: The present study comprised 4737 participants with a mean age of 63.6 ± 11.0 years. The prevalence of diabetes mellitus was higher in those with grade 3 sleep efficiency than that in those with grade 1 and grade 2 sleep efficiency in participants with (10.9% vs 8.5% vs 8.3%, respectively; P =.134) or without (9.5% vs 5.6% vs 3.5%, respectively; P <.001) sleep-disordered breathing. After adjusting for potential confounding factors, sleep efficiency <80% was associated with the prevalence of diabetes mellitus only in participants without sleep-disordered breathing (odds ratio, 1.894; 95% confidence interval, 1.187-3.022, P =.007)., Conclusion: Poor sleep efficiency is associated with diabetes mellitus in those without sleep-disordered breathing. Therefore, the relationship between sleep efficiency and diabetes mellitus is worth further investigation., (© 2019 Ruijin Hospital, Shanghai Jiaotong University School of Medicine and John Wiley & Sons Australia, Ltd.)

Background: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas., Methods: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used., Results: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research., Conclusions: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research., (© 2020 American Cancer Society.)

Background: Cervical cancer is one of the common causes of premature death and disability in women worldwide. It is preventable through vaccination, and screening for precancerous lesions and early treatment. However, screening service uptake and treatment for cervical cancer face significant challenges in low-income countries due to poor information systems. The aim of this study was to assess knowledge of cervical cancer and its determinants among women aged 30-49 years living in Jimma Town, Southwest Ethiopia., Methods: A community-based cross-sectional study was undertaken from March 20 to April 15, 2017. The data were collected using a structured interviewer-administered questionnaire and analyzed by SPSS version 21. Multivariable logistic regression anaysis was done and variables with a p-value < 0.05 were considered statistically significant., Results: Of the interviewed women, only 321(43.6%) had adequate knowledge about cervical cancer and screening. Attending secondary school or above (AOR = 2.42, 95% CI: 1.24-4.74), using modern contraceptives (AOR = 6.31, 95% CI: 2.86-13.89), knowing somebody with cervical cancer (AOR = 2.24, 95% CI: 1.35-3.71) and knowing someone screened for cervical cancer (AOR = 2.23, 95% CI: 1.30-3.80) were associated with knowledge of cervical cancer., Conclusion: Knowledge of cervical cancer is low in the current study area even if appropriate knowledge regarding the disease is important in decreasing the incidence and prevalence of cervical cancer through screening and human pappiloma virus vaccination. Increasing awereness regarding the disease and prevention strategies are the key issue.

Community-based organizations (CBOs) are essential partners in community-engaged research, yet little is known about their research capacity. Community experts and organizations bring unique knowledge of the community to research partnerships, but standard validated measures of CBO research capacity do not yet exist. We report here on the refinement through a structured Delphi panel of a previously developed and piloted framework of CBO research capacity and an accompanying instrument, the Community REsearch Activity Assessment Tool (CREAT). A Delphi panel composed of twenty-three experts recruited from community (52%) and academic researchers (48%) from around the USA participated in five rounds of review to establish consensus regarding framework domains, operational definitions, and tool items. Panelists rated the importance of items on a 5-point Likert scale and assessed for the inclusion and language of items. Initial rounds of review began with reviewing the framework and definitions, with subsequent rounds including review of the full instrument. Concluding rounds brought back items that had not yet reached consensus for additional review. Median response values (MRV) and intra-quartile ranges (IQR) were calculated for each Likert item. Items with an MRV > 3.5 were deemed as having reached consensus and were retained. Language changes were made for items with MRV > 2.0 and < 3.5 and an IQR > 1.5. Items with MRV < 2.0 were excluded from the final tool. Panelist response rate was high (> 75%). Consensus was achieved for the inclusion of all domains, subdomains and operational definitions except "evidence-based practices." Extensive changes to the CREAT instrument were made for clarification, to provide additional detail and to ensure applicability for CBOs. The CREAT framework and tool was refined through input from community and academic researchers. Availability of a validated tool to assess research capacity of CBOs will support targeted research capacity building for community organizations and partners, thus strengthening collaborations.

The Yurok Tribe partnered with the University of California Davis (UC Davis) Superfund Research Program to identify and address contaminants in the Klamath watershed that may be impairing human and ecosystem health. We draw on a community-based participatory research approach that begins with community concerns, includes shared duties across the research process, and collaborative interpretation of results. A primary challenge facing University and Tribal researchers on this project is the complexity of the relationship(s) between the identity and concentrations of contaminants and the diversity of illnesses plaguing community members. The framework of bi-directional learning includes Yurok-led river sampling, Yurok traditional ecological knowledge, University lab analysis, and collaborative interpretation of results. Yurok staff and community members share their unique exposure pathways, their knowledge of the landscape, their past scientific studies, and the history of landscape management, and University researchers use both specific and broad scope chemical screening techniques to attempt to identify contaminants and their sources. Both university and tribal knowledge are crucial to understanding the relationship between human and environmental health. This paper examines University and Tribal researchers' shared learning, progress, and challenges at the end of the second year of a five-year Superfund Research Program (SRP) grant to identify and remediate toxins in the lower Klamath River watershed. Our water quality research is framed within a larger question of how to best build university-Tribal collaboration to address contamination and associated human health impacts.

Obesity rates in the United States are trending upward, and disadvantaged populations continue to have disproportionate rates of obesity. In Alabama, the ALProHealth initiative used community-based participatory research to work with community coalitions to implement research-based interventions that addressed issues related to the lack of opportunities for physical activity in 14 counties whose populations are at high risk of obesity. Coalitions developed work plans and timelines for implementing interventions on the basis of issues discussed during focus groups at the beginning of the ALProHealth initiative. These 14 coalitions implemented 101 interventions related to physical activity in 16 communities. In this evaluation, we measured potential reach and improvements in amenities. The largest reach for an intervention was achieved through marketing and communication efforts, while the most popular intervention, undertaken by the largest number of communities, centered on installing or repairing playground equipment at community parks. Community-based participatory research is an effective method for addressing health issues at the local level, as interventions are developed and readily adopted through active partnerships with community leaders and residents.

Background: A community-based research (CBR) approach is critical to redressing the exclusion of women-particularly, traditionally marginalized women including those who use substances-from HIV research participation and benefit. However, few studies have articulated their process of involving and engaging peers, particularly within large-scale cohort studies of women living with HIV where gender, cultural and linguistic diversity, HIV stigma, substance use experience, and power inequities must be navigated., Methods: Through our work on the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), Canada's largest community-collaborative longitudinal cohort of women living with HIV (n = 1422), we developed a comprehensive, regionally tailored approach for hiring, training, and supporting women living with HIV as Peer Research Associates (PRAs). To reflect the diversity of women with HIV in Canada, we initially hired 37 PRAs from British Columbia, Ontario, and Quebec, prioritizing women historically under-represented in research, including women who use or have used illicit drugs, and women living with HIV of other social identities including Indigenous, racialized, LGBTQ2S, and sex work communities, noting important points of intersection between these groups., Results: Building on PRAs' lived experience, research capacity was supported through a comprehensive, multi-phase, and evidence-based experiential training curriculum, with mentorship and support opportunities provided at various stages of the study. Challenges included the following: being responsive to PRAs' diversity; ensuring PRAs' health, well-being, safety, and confidentiality; supporting PRAs to navigate shifting roles in their community; and ensuring sufficient time and resources for the translation of materials between English and French. Opportunities included the following: mutual capacity building of PRAs and researchers; community-informed approaches to study the processes and challenges; enhanced recruitment of harder-to-reach populations; and stronger community partnerships facilitating advocacy and action on findings., Conclusions: Community-collaborative studies are key to increasing the relevance and impact potential of research. For women living with HIV to participate in and benefit from HIV research, studies must foster inclusive, flexible, safe, and reciprocal approaches to PRA engagement, employment, and training tailored to regional contexts and women's lives. Recommendations for best practice are offered.

Objective Continuing education (CE) is essential for a healthcare workforce, but in regional areas of Australia there are challenges to providing and accessing relevant, reliable and low-cost opportunities. The aim of the present study was to collaborate with the local regional healthcare workforce to design, deliver and evaluate an interdisciplinary CE (ICE) program. Methods A participatory action research (PAR) model combined with an appreciative inquiry (AI) framework was used to design, deliver and evaluate an ICE program. A focus group of 11 health professionals developed an initial program. Evaluation data from 410 program participants were analysed using AI. Results The ICE program addressed the CE barriers for the regional healthcare workforce because the locally derived content was delivered at a reasonable cost and in a convenient location. Program participants identified that they most valued shared experiences and opportunities enabling them to acquire and confirm relevant knowledge. Conclusion ICE programs enhance interdisciplinary collaboration. However, attendance constraints for regional healthcare workforce include location, cost, workplace and personal factors. Through community engagement, resource sharing and cooperation, a local university and the interdisciplinary focus group members successfully designed and delivered the local education and research nexus program to address a CE problem for a regional healthcare workforce. What is known about the topic? Participation in CE is mandatory for most health professionals. However, various barriers exist for regional health workers to attending CE. Innovative programs, such as webinars and travelling workshops, address some of the issues but create others. Bringing various health workers together for the simultaneous education of multiple disciplines is beneficial. Collectively, this is called ICE. What does this paper add? Using PAR combined with AI to design an ICE program will focus attention on the enablers of the program and meet the diverse educational needs of the healthcare workforce in regional areas. Engaging regional health professionals with a local university to design and deliver CE is one way to increase access to quality, cost-effective education. What are the implications for practitioners? Regional healthcare workers' CE needs are more likely to be met when education programs are designed by them and developed for them. ICE raises awareness of the roles of multiple healthcare disciplines. Learning together strengthens healthcare networks by bolstering relationships through a greater understanding of each other's roles. Enriching communication between local health workers has the potential to enhance patient care.

Aims: To compare the characteristics and outcomes of people with type 2 diabetes recruited to the LEADER trial to those of participants in the contemporaneous community-based Fremantle Diabetes Study Phase II (FDS2) who fulfilled LEADER entry criteria., Methods: Baseline characteristics of LEADER and LEADER-eligible FDS2 participants were compared using bivariate methods. Incidence rates of the primary (nonfatal myocardial infarction, nonfatal stroke, cardiovascular disease (CVD) death) and other outcomes in the LEADER placebo group were compared with those in LEADER-eligible FDS2 participants during 3.8 years after entry, the median LEADER follow-up., Results: Of 1551 FDS2 type 2 participants, 323 (20.8%) were LEADER-eligible. Compared with the LEADER sample, they were an average 6 years older, and were less likely to be male, obese and to have prior CVD. There were 3.9 and 2.9 primary outcomes/100 patient-years in LEADER placebo-treated and FDS2 LEADER-eligible patients, respectively. Incidence rates for first myocardial infarction and stroke were 1.9 and 2.1 events/100 patient-years and 1.1 and 1.0 events/100 patient-years, respectively. FDS2 LEADER-eligible patients had a lower CVD death rate of 0.8 versus 1.6/100 patient-years in the LEADER placebo group, but their non-CVD mortality was greater (2.1 versus 1.0/100 patient-years)., Conclusions: These data suggest recruitment bias in type 2 diabetes CVD outcome trials., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Strategies are needed to prevent and control type 2 diabetes and intermediate hyperglycaemia, which together affect roughly a third of adults in Bangladesh. We aimed to assess the effects of mHealth and community mobilisation on the prevalence of intermediate hyperglycaemia and diabetes among the general adult population in rural Bangladesh, and to assess the effect of these interventions on the incidence of type 2 diabetes among people with intermediate hyperglycaemia within the study population., Methods: DMagic was a three-arm, cluster-randomised trial of participatory community mobilisation, mHealth mobile phone messaging, and usual care (control) in 96 villages (population roughly 125 000) in Bangladesh. Community mobilisation involved 18 monthly group meetings, led by lay facilitators, applying a participatory learning and action (PLA) cycle focused on diabetes prevention and control. mHealth involved twice-weekly voice messages over 14 months promoting behaviour change to reduce diabetes risk. The primary outcomes were the combined prevalence of type 2 diabetes and intermediate hyperglycaemia in the overall population at the end of the intervention implementation period, and 2-year cumulative incidence of type 2 diabetes in a cohort with intermediate hyperglycaemia at baseline. Primary outcomes were assessed through fasting blood glucose concentrations and 2-h oral glucose tolerance tests among a cross-section of adults aged 30 years and older and a cohort of individuals identified with intermediate hyperglycaemia. Prevalence findings are based on a cross-sectional survey at the end of the study; incidence findings are based on 2-year follow-up survey of a cohort of individuals identified with intermediate hyperglycaemia through a cross-sectional survey at baseline. We also assessed the cost-effectiveness of the interventions. This trial is registered with the ISRCTN registry, number ISRCTN41083256, and is completed., Findings: The study took place between June 27, 2015, and June 28, 2018, with the PLA intervention running in 32 villages from June, 2016, to December, 2017, and the mHealth intervention running in 32 villages from Oct 21, 2016, to Dec 24, 2017. End-of study prevalence was assessed in 11 454 individuals and incidence in 2100 individuals. There was a large reduction in the combined prevalence of type 2 diabetes and intermediate hyperglycaemia in the PLA group compared with the control group at the end of the study (adjusted [for stratification, clustering, and wealth] odds ratio [aOR] 0·36 [0·27-0·48]), with an absolute reduction of 20·7% (95% CI 14·6-26·7). Among 2470 adults with intermediate hyperglycaemia at baseline, 2100 (85%) were followed-up at 2 years. The 2-year cumulative incidence of diabetes in this cohort was significantly lower in the PLA group compared with control (aOR 0·39, 0·24-0·65), representing an absolute incidence reduction of 8·7% (3·5-14·0). There was no evidence of effect of mHealth on combined prevalence of intermediate hyperglycaemia and diabetes (aOR 0·93, 0·74-1·16) or the incidence of diabetes (1·02, 0·73-1·43). The incremental cost-effectiveness ratios for PLA were INT$316 per case of intermediate hyperglycaemia or type 2 diabetes prevented and $6518 per case of type 2 diabetes prevented among individuals with intermediate hyperglycaemia., Interpretation: Our data provide strong evidence to support the use of community mobilisation based on PLA to prevent type 2 diabetes in this rural Bangladeshi population. Despite raising knowledge and awareness of diabetes, the mHealth intervention did not change disease outcomes in our population. Replication studies in other populations should be a priority., Funding: UK Medical Research Council., (Copyright © 2019 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Background: Aboriginal women and families are under-represented in Australian research on pregnancy and childbirth. The Aboriginal Families Study aimed to investigate the views and experiences of a representative sample of women giving birth to an Aboriginal baby in South Australia between July 2011 and June 2013, using methods designed to respect Aboriginal culture and communities., Methods: A team of 12 Aboriginal researchers facilitated community engagement and recruitment of Aboriginal and non-Aboriginal mothers of Aboriginal infants in urban, regional and remote areas of South Australia over a two-year period., Results: A total of 344 women took part, around a quarter of all Aboriginal women giving birth in South Australia in the study period (39% urban, 35% regional and 25% from remote areas). Participants were representative in relation to maternal age (mean age of 25 years, range=15-43 years). Over half of women (56%) first heard about the study via a member of the fieldwork team making contact with them through community connections. Other major sources of recruitment were: Aboriginal health services/programs (20%) and public maternity hospitals (16%). Almost all of the women (95%) recruited via community networks of the fieldwork team completed the questionnaire. In contrast, 51% of women recruited via public hospitals completed the questionnaire (odds ratio=0.1, 95% confidence interval 0.0-0.1, p<0.001)., Conclusions: Aboriginal researchers' community knowledge and leadership is critical to the conduct of successful Aboriginal health research. High levels of participation in research by 'harder to reach' populations are achievable when researchers take time to build relationships and work in partnership with communities., (Copyright © 2018 Australian College of Midwives. All rights reserved.)

HIV-related stigma creates barriers to HIV testing, medication adherence, and retention in care. Guided by the principles of community-based participatory research (CBPR) and in collaboration with community health workers (CHWs), the Stigma-reduction through Education, Empowerment, and Research (SEERs) project was developed with and for youth living in Nakuru, Kenya to reduce HIV-related stigma. The purpose of this qualitative study was to examine the experiences of the CHWs serving as SEERs facilitators. To evaluate SEERs, 37 facilitators completed open-ended survey questions to gather their experiences and recommendations for future program implementation and sustainability. Participants' mean age was 30.58 (standard deviation = 9.62), ranging from ages 18 to 53. Thematic content analysis was used to categorize (a) facilitators' experiences and the community impact of the SEERs project, (b) lessons learned, and (c) challenges to sustainability. Recommendations will be used to modify the SEERs project, improve implementation and sustainability strategies, and may provide guidance for similar CBPR projects.

Public engagement in health research has gained popularity because of its potential to co-create knowledge, generate dialogue, and ground research in the priorities and realities of the target groups. However, public engagement that achieves these objectives could still entail unforeseen negative consequences or a wasteful use of resources. Although the evaluation of public engagement has evolved in recent years, we lack consistent evaluation criteria for systematic and transparent assessments of success and failure. This article introduces standard evaluation criteria from the field of development aid evaluation (effectiveness, efficiency, impact, relevance, sustainability) to promote more systematic and comprehensive evaluation practice. I apply these criteria to the public engagement component of a recent research project into antimicrobial resistance, antibiotic use, and health behaviour in Thailand and Laos. Considering village-level engagement workshops, international exhibitions of photo narratives of traditional healing in northern Thailand, and social media communication, I demonstrate that activities that seem to achieve their objectives can still have problematic characteristics in other dimensions. I conclude that these five generic evaluation criteria can broaden our understanding of public engagement. Their more widespread use in evaluations can help build a more comprehensive and balanced evidence base, even if only a sample of public engagement projects and programmes can be evaluated systematically.

Background: In this study, we use community-based participatory processes to engage community and academic partners in a meaningful exchange to identify and pilot test risk communication strategies for Zika virus prevention and control. Methods: Community members were actively involved in planning, developing, and implementing a risk communication initiative. Qualitative and quantitative data gathered through individual interviews, focus groups, and community advisory board input provided information for the identification of relevant risk communication strategies to increase the understanding about Zika virus and to promote behavior change. To examine its impact we obtained baseline and follow-up data from a random sample of 75 community residents. A face-to-face interview was conducted to assess community members' knowledge, attitudes, and behaviors regarding Zika virus infection. Results: Study activities focused on three risk communication strategies: Zika awareness health fair, health education through theater, and community forums and workshops. The risk communication initiative was implemented over a two-month period. Findings from baseline and follow-up data demonstrated significant positive changes in respondents' recognition of personal and community responsibility for the prevention of Zika infection, increased knowledge of prevention strategies, and enhanced engagement in preventive behaviors for mosquito control. Conclusion: Our findings sustain the benefits of community based participatory research for the design and implementation of risk communication strategies that are relevant to enable residents in low-income communities to take informed decisions for the protection against Zika virus and other mosquito-borne diseases.

Background: Liberia is a West African country that needs substantial investment to strengthen its National Malaria Control Programme (NMCP), which was disrupted during the 2014-2016 Ebola epidemic. As elsewhere, Liberian pregnant women are especially vulnerable to malaria. Understanding prevention and treatment-seeking behaviours among the population is crucial to strategize context-specific and women-centred actions, including locally-led malaria research, to improve women's demand, access and use of NMCP strategies against malaria in pregnancy., Methods: In 2016, after the Ebola crisis, a qualitative inquiry was conducted in Monrovia to explore populations' insights on the aetiology, prevention and therapeutics of malaria, as well as the community and health workers' perceptions on the utility of malaria research for pregnant women. In-depth interviews and focus group discussions were conducted among pregnant women, traditional community representatives and hospital staff (n = 38), using a feminist interpretation of grounded theory., Results: The narratives indicate that some Liberians believed in elements other than mosquito bites as causes of malaria; many had a low malaria risk perception and disliked current effective prevention methods, such as insecticide-treated nets; and some would resort to traditional medicine and spiritual care to cure malaria. Access to clinic-based malaria care for pregnant women was reportedly hindered by lack of financial means, by unofficial user fees requested by healthcare workers, and by male partners' preference for traditional medicine. The participants suggested that malaria research in Liberia could help to design evidence-based education to change current malaria prevention, diagnostic and treatment-seeking attitudes, and to develop more acceptable prevention technologies., Conclusion: Poverty, insufficient education on malaria, corruption, and poor trust in healthcare establishment are structural factors that may play a greater role than local traditional beliefs in deterring Liberians from seeking, accessing and using government-endorsed malaria control strategies. To increase access to and uptake of preventive and biomedical care by pregnant women, future malaria research must be informed by people's expressed needs and constructed meanings and values on health, ill health and healthcare.

Objectives: Patient involvement in palliative care research is a desirable if challenging goal. Photovoice is an action research method in which affected communities gather photographs to document and discuss their communities' strengths and concerns. Engagement with policymakers is a separately stated goal. Photovoice is increasingly used in health-related research but has not been widely described in the palliative care literature. We report on experiences and lessons learnt using Photovoice in Blantyre, Malawi to encourage its wider use in research and practice., Methods: Thirteen co-researchers (six patients and seven household carers, mean age 47 years) receiving community-based palliative care, attended nine half-day group sessions over a 4-month period. Co-researchers produced, selected and analysed photographs. On completion of data collection, they conducted an advocacy event, including a photographic exhibition, to which media representatives and community leaders were invited., Results: Procedures to ensure safety of co-researchers and to obtain consent of individuals identified in the photographs were developed during the planning phase. Co-researchers engaged with the Photovoice process with enthusiasm, although frailty and physical disability (poor sight) limited participation for some older adults. Inclusion of palliative care staff within the research team helped to facilitate open dialogue and clinical review where appropriate., Conclusions: In this Photovoice study, patients and family members receiving palliative care engaged in an exploration of household well-being using photography, participatory analysis and an advocacy event. With appropriate planning, Photovoice can be adapted to a range of settings to enhance patient participation., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Background: Over the past several decades, there have been numerous peer-reviewed articles written about people who use drugs (PWUDs) from the Downtown Eastside neighborhood of Vancouver, Canada. While individual researchers have engaged and acknowledged this population as participants and community partners in their work, there has been comparatively little attention given to the role of PWUDs and drug user organizations in directing, influencing, and shaping research agendas., Methods: In this community-driven research, we examine 20 years of peer-reviewed studies, university theses, books, and reports that have been directed, influenced, and shaped by members of the activist organization the Vancouver Area Network of Drug Users (VANDU). In this paper, we have summarized VANDU's work based on different themes from each article., Results: After applying the inclusion criteria to over 400 articles, 59 items containing peer-reviewed studies, books, and reports were included and three themes of topics researched or discussed were identified. Theme 1: 'health needs' of marginalized groups was found in 39% of articles, Theme 2: 'evaluation of projects' related to harm reduction in 19%, and Theme 3: 'activism' related work in 42%. Ninety-four percent of co-authors were from British Columbia and 44% of research was qualitative. Works that have been co-authored by VANDU's members or acknowledged their participations created 628 citations. Moreover, their work has been accessed more than 149,600 times., Conclusions: Peer-based, democratic harm reduction organizations are important partners in facilitating groundbreaking health and social research, and through research can advocate for the improved health and wellbeing of PWUDs and other marginalized groups in their community. This article also recommends that PWUDs should be more respectfully engaged and given appropriate credit for their contributions.

Context: Obesity, diabetes and cardiovascular disease (CVD) have reached epidemic proportions among Native Hawaiians/Pacific Islanders (NHPI). Culturally responsive interventions that account for their interpersonal, sociocultural and socioeconomic realities are a public health priority., Objective: To describe cultural adaptation and culturally grounded approaches to developing health interventions for NHPI and to review the culturally responsive approaches used by, and outcomes from, two long-standing community-based participatory research projects (CBPR) in Hawai'i: PILI 'Ohana and KāHOLO Projects., Methods: A literature review of 14 studies from these two projects was done to exemplify the methods applied to culturally adapting existing evidence-based interventions and to developing novel interventions from the 'ground up' to address health disparities in NHPI. Of the 14 studies reviewed, 11 were studies of the clinical and behavioural outcomes of both types of interventions., Results: Both culturally adapted and culturally grounded approaches using community-based assets and NHPI cultural values/practices led to establishing sustainable and scalable interventions that significantly improved clinical measures of obesity, diabetes and hypertension., Conclusion: Several recommendations are provided based on the lessons learned from the PILI 'Ohana and KāHOLO Projects. Multidisciplinary and transdisciplinary research using CBPR approaches are needed to elucidate how human biology is impacted by societal, environmental and psychological factors that increase the risk for cardiometabolic diseases among NHPI to develop more effective health promotion interventions and public health policies.

The objective was to combine cost analysis and participatory research to identify actionable cost-saving opportunities in public health services for sexually transmitted infections (STI). This study used a mixed-methods approach of analyzing Florida public health data, combined with participatory research approaches to data collection including quantitative web-based surveys, qualitative in-depth interviews, and group discussions. Florida surveillance and administrative data on STIs and county health department (CHD) costs of services for 2012 were analyzed in addition to primary data collected from all Florida CHDs during 2014 and 2015. Variations in STI service delivery practices were the primary variables of concern. Variations in practices, rather than demographic factors such as size of county or STI rates, were associated with variations in cost. Five identified variations in practices were rated for cost savings, no or minimal adverse health impact, and ease of implementation. Following discussion of the ratings by CHDs, texting STI test results was ranked highest for quality improvement implementation initiatives. This study provides a compelling example of how in-depth qualitative and quantitative follow-up research focused on discovery and development with the practice community provides critical insights for interpreting administrative data and drawing accurate reality-based conclusions. The research design was intended to be a highly adaptive research approach that adjusts to the political and technical circumstances of delivering public health services. The extensive stakeholder engagement throughout all phases the study enables this research to address and overcome potential barriers and challenges to actionable findings.

Background: The prevalence of early childhood overweight and obesity in Austria has reached average European levels of 20% in boys and 18% in girls. The rationale and study protocol of SALTO, Salzburg Together against Obesity will be presented, which is aimed to assist adults in increasing the rate of 4- to 6-year-old children with a healthy body weight., Methods: A controlled longitudinal sequential study design consisting of 14 intervention (IK) and 8 control (CK) kindergarten was used to investigate the effect of actions tailored for teachers and parents on BMI among 4- to 6-year-old children. The study launched in November 2014 was approved by the ethics committee of the University of Salzburg., Results: 681 children, 181 parents (119 mothers, 62 fathers) and 30 teachers were investigated until October 2016. Preliminary analyses revealed that more boys (19%) and fathers (60% IK, 43% CK) were overweight and obese than girls (16%) and mothers (19% IK, 20% CK)., Conclusion: The challenges faced by the SALTO staff in the implementation of health-promoting actions in the kindergarten are manifold. The Community-Oriented Core Setting (COCS) intervention approach will show whether the actions will reduce the percentage of obesity and be sustainable in the long term., (© 2018 The Author(s) Published by S. Karger GmbH, Freiburg.)

Purpose: To improve health and reduce health disparities, research partnerships with American Indian and Alaska Native communities should build on existing traditions and strengths. The overall goal of this pilot project was to clarify the needs of tribal community members and determine strengths and resources available to the community., Design: Community-based participatory research was the approach used to obtain community input. Data collection methods included, Photovoice ( n = 16), digital storytelling ( n = 4), and community capacity surveys ( n = 128)., Results: Quantitative and qualitative findings supported the need to (1) address youth suicide and substance abuse on the reservation and (2) use preexisting resources available in the community. The results led to the development of a strengths-based intervention incorporating the Gathering of Native American's curriculum., Conclusion: Integral to the development, implementation, and sustainability of the intervention was the truly reciprocal relationship developed between community and university partners.

Background: The growing interest in community-based research on non-suicidal self-injury (NSSI) reflects the high prevalence rates found among vulnerable adolescents and young adults. A significant concern in research with vulnerable populations, and on sensitive topics, is the development of an ethical framework that protects the needs and rights of the participants while responding to researchers' goals and limitations and the broader clinical and public health concerns., Aim: The aim of the present study was to review the ethical practices followed in community-based research on NSSI., Method: A systematic review of literature was conducted, based on PRISMA guidelines, on community-based surveys in NSSI, published between 1995 and 2016. A total of 93 studies were included in the review., Results: The results examine a range of ethical issues; the procedures for consent and assent for study participation, protection of confidentiality and the limits of confidentiality, assessment of imminent risk of suicide and subsequent processes, and debriefing measures. The interaction between the study characteristics and the reported ethical procedures has been examined, with a focus on participant age, study design (cross-sectional or longitudinal), survey modality (paper-based survey or online survey) and primary variable/s of interest (only NSSI or NSSI and suicidal ideation/behavior) under study. The review describes the typical ethical practices in community-based research on NSSI, identifies the gaps in the existing literature, and has implications for the formulation of best-practice guidelines., (Copyright © 2017 Elsevier B.V. All rights reserved.)

Objective: Community Partners in Care, a community-partnered, cluster-randomized trial with depressed clients from 93 Los Angeles health and community programs, examined the added value of a community coalition approach (Community Engagement and Planning [CEP]) versus individual program technical assistance (Resources for Services [RS]) for implementing depression quality improvement in underserved communities. CEP was more effective than RS in improving mental health-related quality of life, reducing behavioral health hospitalizations, and shifting services toward community-based programs at six months. At 12 months, continued evidence of improvement was found. This study examined three-year outcomes., Methods: Among 1,004 participants with depression who were eligible for three-year follow-up, 600 participants from 89 programs completed surveys. Multiple regression analyses estimated intervention effects on poor mental health-related quality of life and depression, physical health-related quality of life, behavioral health hospital nights, and use of services., Results: At three years, no differences were found in the effects of CEP versus RS on depression or mental health-related quality of life, but CEP had modest effects in improving physical health-related quality of life and reducing behavioral health hospital nights, and CEP participants had more social- and community-sector depression visits and greater use of mood stabilizers. Sensitivity analyses with longitudinal modeling reproduced these findings but found no significant differences between groups in change from baseline to three years., Conclusions: At three years, CEP and RS did not have differential effects on primary mental health outcomes, but CEP participants had modest improvements in physical health and fewer behavioral health hospital nights.

To help community health workers (CHW) meet increased demand for their services, it is essential to have data supported strategies for approaches to their training and capacity development. The objective of this paper is to report on the development, implementation, and evaluation of "Heart 101," a cardiovascular disease (CVD) training program, conducted among CHW in Hawai'i who serve Native Hawaiians and other Pacific Peoples (NHPP). Principles from Community-Based Participatory Research provided a framework to develop and implement the 5-hour training curriculum. Developers incorporated teaching strategies shown to be effective among learners that represent the majority of CHW, and included principles of adult learning theory and culture-based education. Training participants completed pre-, post-, and 6-months post-training knowledge tests, as well as demographic and participant satisfaction surveys. Data analysis based on pre- and post-training knowledge tests (n=30) indicated that Heart 101 significantly increased CVD knowledge by 32% (P < .001, t test). Long-term CVD competency measured at six-months post-training (n = 20) was also shown to be significant (P < .001, t test). Analysis of knowledge by subtopic suggested CHW strengths in clinical aspects of CVD and weaknesses in medical terminology and basic science aspects. These results, along with positive participant satisfaction, suggest that a culturally relevant and interactive course is a strong approach for CVD information dissemination to CHW serving NHPP communities, and provides insight on potential areas for special focus in their training. The demonstrated success of Heart 101 has positive implications for the standardization of CHW education and for their professional development., Competing Interests: None of the authors identify any conflict of interest.

Background: Enhancing the participation of Chinese older women in biobanking efforts is important for precision medicine efforts, as underrepresented groups risk benefiting less than others from medical advancements in individualized therapies. Focusing on a sample of Chinese older women in Chicago's Chinatown, this qualitative study seeks to describe attitudes toward, and barriers and facilitators of, participation in biospecimen research., Method: We conducted six focus groups among Chinese-speaking adult women age 45 and above. Focus groups were transcribed, coded, and analyzed for emergent themes., Results: Forty-seven women participated in focus groups, the majority (66.0%) were age 66 and over and half (50.1%) had less than a high school education. Participants expressed predominantly positive attitudes toward biospecimen research, but also identified multifaceted barriers to participation that included cultural beliefs of the body, perceived physical and privacy risks, as well as perceptions related to aging. Use of minimally invasive biospecimen collection and education to promote awareness of biospecimen research were suggested facilitators to increasing biospecimen research participation., Conclusions: Culturally and linguistically isolated populations like Chinese older women are at risk of exclusion from advancements in precision medicine. Our findings provide cultural insights for tailoring interventions for Chinese older women to increase knowledge, change attitudes, and increase intention and participation in biospecimen research. We also highlight the need for individual, family, and community level interventions to promote healthy aging among Chinese older women., (© The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Few studies have addressed retention of minorities, particularly African Americans, in longitudinal research. Our aim was to determine whether there was differential retention between African Americans and Whites in the ARIC cohort and identify cardiovascular disease (CVD) risk factors and indicators of socioeconomic status (SES) associated with these retention differences., Methods: 15,688 participants, 27% African American and 73% White, were included from baseline, 1987-1989, and classified as having died, lost or withdrew from study contact, or remained active in study calls through 2013. Life tables were created illustrating retention patterns stratified by race, from baseline through visit 5, 2011-2013. Prevalence tables stratified by race, participation status, and center were created to examine CVD risk factors and SES at baseline and visit 5., Results: 54% of African Americans compared with 62% of Whites were still in follow-up by 2013. This difference was due to an 8% higher cumulative incidence of death among African Americans. Those who remained in follow-up had the lowest baseline CVD risk factors and better SES, followed by those who were lost/withdrew, then those who died. Whites had lower levels of most CVD risk factors and higher SES than African Americans overall at baseline and visit 5; though, the magnitude of visit 5 differences was less., Conclusions: In the ARIC cohort, retention differed among African Americans and Whites, but related more to mortality differences than dropping-out. Additional research is needed to better characterize the factors contributing to minority participants' recruitment and retention in longitudinal research., Competing Interests: Conflicts of Interest: None declared.

Background: The prevalence of type 2 diabetes among Malaysian adults has increased by more than two folds over the past two decades. Strategies to collaborate with the existing community partners may become a promising channel for wide-scale dissemination of diabetes prevention in the country. The objectives of this study were to determine the effects of community-based lifestyle interventions delivered to adults with prediabetes and their health-related quality of life as compared to the usual care group., Methods: This was a quasi-experimental study conducted in two sub-urban communities in Seremban, Malaysia. A total of 268 participants with prediabetes aged between 18 to 65 years old were assigned to either the community-based lifestyle intervention (Co-HELP) (n = 122) or the usual care (n = 146) groups. The Co-HELP program was delivered in partnership with the existing community volunteers to incorporate diet, physical activity, and behaviour modification strategies. Participants in the Co-HELP group received twelve group-based sessions and two individual counselling to reinforce behavioural change. Participants in the usual care group received standard health education from primary health providers in the clinic setting. Primary outcomes were fasting blood glucose, 2-hour plasma glucose, and HbA1C. Secondary outcomes included weight, BMI, waist circumference, total cholesterol, triglyceride, LDL cholesterol, HDL cholesterol, systolic and diastolic blood pressure, physical activity, diet, and health-related quality of life (HRQOL)., Results: An intention-to-treat analysis of between-groups at 12-month (mean difference, 95% CI) revealed that the Co-HELP participants' mean fasting plasma glucose reduced by -0.40 mmol/l (-0.51 to -0.28, p<0.001), 2-hour post glucose by -0.58 mmol/l (-0.91 to -0.24, p<0.001), HbA1C by -0.24% (-0.34 to -0.15, p<0.001), diastolic blood pressure by -2.63 mmHg (-3.79 to -1.48, p<0.01), and waist circumference by -2.44 cm (-4.75 to -0.12, p<0.05) whereas HDL cholesterol increased by 0.12 mmol/l (0.05 to 0.13, p<0.01), compared to the usual care group. Significant improvements were also found in HRQOL for both physical component (PCS) by 6.51 points (5.21 to 7.80, p<0.001) and mental component (MCS) by 7.79 points (6.44 to 9.14, p<0.001). Greater proportion of participants from the Co-HELP group met the clinical recommended target of 5% or more weight loss from the initial weight (24.6% vs 3.4%, p<0.001) and physical activity of >600 METS/min/wk (60.7% vs 32.2%, p<0.001) compared to the usual care group., Conclusions: This study provides evidence that a culturally adapted diabetes prevention program can be implemented in the community setting, with reduction of several diabetes risk factors and improvement of HRQOL. Collaboration with existing community partners demonstrated a promising channel for the wide-scale dissemination of diabetes prevention at the community level. Further studies are required to determine whether similar outcomes could be achieved in communities with different socioeconomic backgrounds and geographical areas., Trial Registration: IRCT201104106163N1., Competing Interests: The authors have declared that no competing interests exist.

Background: Effective community-partnered and patient-centered outcomes research needs to address community priorities. However, optimal sampling methods to engage stakeholders from hard-to-reach, vulnerable communities to generate research priorities have not been identified., Methods: In two similar rural, largely Hispanic communities, a community advisory board guided recruitment of stakeholders affected by chronic pain using a different method in each community: 1) snowball sampling, a chain- referral method or 2) purposive sampling to recruit diverse stakeholders. In both communities, three groups of stakeholders attended a series of three facilitated meetings to orient, brainstorm, and prioritize ideas (9 meetings/community). Using mixed methods analysis, we compared stakeholder recruitment and retention as well as priorities from both communities' stakeholders on mean ratings of their ideas based on importance and feasibility for implementation in their community., Results: Of 65 eligible stakeholders in one community recruited by snowball sampling, 55 (85 %) consented, 52 (95 %) attended the first meeting, and 36 (65 %) attended all 3 meetings. In the second community, the purposive sampling method was supplemented by convenience sampling to increase recruitment. Of 69 stakeholders recruited by this combined strategy, 62 (90 %) consented, 36 (58 %) attended the first meeting, and 26 (42 %) attended all 3 meetings. Snowball sampling recruited more Hispanics and disabled persons (all P < 0.05). Despite differing recruitment strategies, stakeholders from the two communities identified largely similar ideas for research, focusing on non-pharmacologic interventions for management of chronic pain. Ratings on importance and feasibility for community implementation differed only on the importance of massage services (P = 0.045) which was higher for the purposive/convenience sampling group and for city improvements/transportation services (P = 0.004) which was higher for the snowball sampling group., Conclusions: In each of the two similar hard-to-reach communities, a community advisory board partnered with researchers to implement a different sampling method to recruit stakeholders. The snowball sampling method achieved greater participation with more Hispanics but also more individuals with disabilities than a purposive-convenience sampling method. However, priorities for research on chronic pain from both stakeholder groups were similar. Although utilizing a snowball sampling method appears to be superior, further research is needed on implementation costs and resources.

This analysis describes the nature of community participation in National Institutes of Health and Centers for Disease Control and Prevention funded community-based participatory research (CBPR) projects, and explores the scientific and social implications of variation in community participation. We conducted in-depth interviews in 2012 with professional and community researchers from 25 CBPR projects in the Southeast US. Interview topics focused on participants' experiences with the nature and conduct of their CBPR project. Projects were rated on community participation in 13 components of research. Projects varied substantially in community participation. Some projects had community participation in only two to three components; others had participation in every component. Some professional researchers were deliberate in their inclusion of community participation in all aspects of research, others had community participation in some aspects, and others were mainly concerned that community members had the opportunity to participate in the study. Findings suggest a need for a standardized rubric for community-based research that facilitates delineation of approaches and procedures that are effective and efficient. Little actual community participation may also result in negative social impacts for communities., (© The Author 2016. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background: Community-based research has gained increasing recognition in health research over the last two decades. Such participatory research approaches are lauded for their ability to anchor research in lived experiences, ensuring cultural appropriateness, accessing local knowledge, reaching marginalized communities, building capacity, and facilitating research-to-action. While having these positive attributes, the community-based health research literature is predominantly composed of small projects, using qualitative methods, and set within geographically limited communities. Its use in larger health studies, including clinical trials and cohorts, is limited. We present the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), a large-scale, multi-site, national, longitudinal quantitative study that has operationalized community-based research in all steps of the research process. Successes, challenges and further considerations are offered., Discussion: Through the integration of community-based research principles, we have been successful in: facilitating a two-year long formative phase for this study; developing a novel survey instrument with national involvement; training 39 Peer Research Associates (PRAs); offering ongoing comprehensive support to PRAs; and engaging in an ongoing iterative community-based research process. Our community-based research approach within CHIWOS demanded that we be cognizant of challenges managing a large national team, inherent power imbalances and challenges with communication, compensation and volunteering considerations, and extensive delays in institutional processes. It is important to consider the iterative nature of community-based research and to work through tensions that emerge given the diverse perspectives of numerous team members., Conclusions: Community-based research, as an approach to large-scale quantitative health research projects, is an increasingly viable methodological option. Community-based research has several advantages that go hand-in-hand with its obstacles. We offer guidance on implementing this approach, such that the process can be better planned and result in success.

Introduction: Cardiovascular disease is the leading cause of death in the United States, and mortality rates are higher among African Americans than among people of other races/ethnicities. We aimed to understand how African American adults and adolescents conceptualize cardiovascular health and perceive related barriers and facilitators., Methods: This qualitative study was conducted as formative research for a larger study, Heart Healthy Lenoir, which aimed to reduce cardiovascular disease disparities among African Americans in eastern North Carolina, part of the widely-known "stroke belt" that runs through the southeastern United States. Using photovoice, a community-based participatory research method, we conducted eight 90-minute photovoice sessions with 6 adults and 9 adolescents in Lenoir County, North Carolina. Topics for each discussion were selected by participants and reflected themes related to cardiovascular health promotion. All sessions were transcribed and coded using a data-driven, inductive approach., Results: Participants conceptualized cardiovascular health to have mental, spiritual, and social health dimensions. Given these broad domains, participants acknowledged many ecological barriers to cardiovascular health; however, they also emphasized the importance of personal responsibility. Facilitators for cardiovascular health included using social health (eg, family/community relationships) and spiritual health dimensions (eg, understanding one's body and purpose) to improve health behaviors., Conclusion: The perspectives of African American adults and adolescents elicited through this formative research provided a strong foundation for Heart Healthy Lenoir's ongoing engagement of community members in Lenoir County and development and implementation of its intervention to prevent cardiovascular disease.

Context: Biobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants' information is managed and shared. Three previous studies of the Canadian public's opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public., Results: Over half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers. Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions. Whereas more respondents indicated a preference for one-time general consent than any other model of consent, they constituted less than half of the total responses, revealing a lack of consensus among survey respondents regarding this question. Respondents identified biobank objectives, governance structure and accountability as the most important information to provide participants. Respondents' concerns about biobanking generally centred around the control and ownership of biological samples and data, especially with respect to potential misuse by insurers, the government and other third parties. Although almost half the respondents suggested that these should be managed by the researchers' institutions, results indicate that the public is interested in being well-informed about these projects and suggest the importance of increased involvement from participants. In conclusion, the study discusses the viability of several proposed models for informed consent, including e-governance, independent trustees and the use of exclusion clauses, in the context of these new findings about the views of the Canadian public.

Background: This exploratory study used participatory methods to identify, characterize, and rank climate-sensitive health priorities in Nunatsiavut, Labrador, Canada., Methods: A mixed method study design was used and involved collecting both qualitative and quantitative data at regional, community, and individual levels. In-depth interviews with regional health representatives were conducted throughout Nunatsiavut (n = 11). In addition, three PhotoVoice workshops were held with Rigolet community members (n = 11), where participants took photos of areas, items, or concepts that expressed how climate change is impacting their health. The workshop groups shared their photographs, discussed the stories and messages behind them, and then grouped photos into re-occurring themes. Two community surveys were administered in Rigolet to capture data on observed climatic and environmental changes in the area, and perceived impacts on health, wellbeing, and lifestyles (n = 187)., Results: Climate-sensitive health pathways were described in terms of inter-relationships between environmental and social determinants of Inuit health. The climate-sensitive health priorities for the region included food security, water security, mental health and wellbeing, new hazards and safety concerns, and health services and delivery., Conclusions: The results highlight several climate-sensitive health priorities that are specific to the Nunatsiavut region, and suggest approaching health research and adaptation planning from an EcoHealth perspective.

Introduction: This article describes the use and effectiveness of the participatory action research (PAR) framework to better understand community members' perceptions and risks of pandemic influenza. In 2009, the H1N1 influenza pandemic affected Indigenous populations more than non-Indigenous populations in Oceania and the Americas. Higher prevalence of comorbidities (diabetes, obesity, asthma and chronic obstructive pulmonary disease) as well as pregnancy in Indigenous communities may have contributed to the higher risks of severe disease. Social disparity, institutionalised racism within health services and differences in access to culturally safe health services have also been reported as contributors to disadvantage and delayed appropriate treatment., Methods: Given these factors and the subsequent impact they had on Australian Aboriginal and Torres Strait Islander communities, the authors set out to ensure that the Australian national, state and territory pandemic plans adequately reflected the risk status of Aboriginal and Torres Strait Islander peoples and promoted meaningful engagement with communities to mitigate this risk. A national study explored the views of Aboriginal and Torres Strait Islander people and their experiences with H1N1 and used a qualitative PAR framework that was effective in gaining deep understandings from participants. Aboriginal and Torres Strait Islander community-controlled organisations and health services were involved in the implementation, interpretation and monitoring of this project., Results: As a result, important features of the implementation of this PAR framework with Aboriginal and Torres Strait Islander communities and organisations emerged. These features included the importance of working in a multidisciplinary team with Aboriginal and Torres Strait Islander researchers; the complexities and importance of obtaining multi-site human research ethics approval processes; the importance and value of building the research capacity of both experienced and novice researchers in PAR; the need to use localised sampling protocols; and the process of undertaking a collective research process and enacting action research and feedback., Conclusions: The most effective responses of this project were embedded in pre-existing relationships with individuals within organisations that had been established over a long period of time between Aboriginal medical services and investigators; however, research relationships established specifically for the purposes of the project were less successful because of changes in personnel and organisational support. The participatory approach used in this study has the potential to be applied to vulnerable populations in other countries.

Objectives: To compare the impact of unconditional and conditional financial incentives on response rates among Australian general practitioners invited by mail to participate in an online survey about cancer care and to investigate possible differential response bias between incentive groups., Study Design and Setting: Australian general practitioners were randomly allocated to unconditional incentive (book voucher mailed with letter of invitation), conditional incentive (book voucher mailed on completion of the online survey), or control (no incentive). Nonresponders were asked to complete a small subset of questions from the online survey., Results: Among 3,334 eligible general practitioners, significantly higher response rates were achieved in the unconditional group (167 of 1,101, 15%) compared with the conditional group (118 of 1,111, 11%) (P = 0.0014), and both were significantly higher than the control group (74 of 1,122, 7%; both P < 0.001). Although more positive opinions about cancer care were expressed by online responders compared with nonresponders, there was no evidence that the magnitude of difference varied by the incentive group. The incremental cost for each additional 1% increase above the control group response rate was substantially higher for the unconditional incentive group compared with the conditional incentive group., Conclusion: Both unconditional and conditional financial incentives significantly increased response with no evidence of differential response bias. Although unconditional incentives had the largest effect, the conditional approach was more cost-effective., (Copyright © 2015 Elsevier Inc. All rights reserved.)

This paper examines the process and outcome of participatory methods for stakeholder identification. We used focus group style participatory methodology to engage local residents in identifying key sub-groups relevant to conservation in Boumba, Niger. We then conducted a quantitative pictorial recognition study to measure the diversity of local useful plant knowledge across groups. The community identified six gender and age-class groupings relevant to the study. The effect of a participant's gender, socially-defined age class or the interaction of the two factors on the number of plants recognized varied by plant use. Medicinal plant knowledge was highest among elders. Food plant knowledge of food plants increased with age for women only. Where as the interaction of age and gender was strongest on fodder plant knowledge, where mid-aged men scored highest. We reflect on the impact that heterogeneity of local botanical knowledge has on our understanding of local natural resource use and the strengths of using a participatory approach to identifying the stakeholder groups which underlie this heterogeneity.

Introduction: With mounting evidence that poor maternal and child health outcomes are related to the social determinants of health, researchers need to engage with vulnerable and isolated communities to gather the evidence that is essential to determine appropriate solutions. Conventional research methods may not ensure the degree and quality of participation that is necessary for meaningful study findings. Participatory methods provide reciprocal opportunities for often excluded communities to both take part in, and guide the conduct of research., Method/design: The Having a baby in a new country research project was undertaken to provide evidence about how women and men of refugee background experience health services at the time of having a baby. This two year, multifaceted proof of concept study comprised: 1) an organisational partnership to oversee the project; 2) a community engagement framework including: female and male Afghan community researchers, community and sector stakeholder advisory groups and community consultation and engagement., Discussion: Inclusive research strategies that address power imbalances in research, and diversity of and within communities, are necessary to obtain the evidence required to address health inequalities in vulnerable populations. Such an approach involves mindfully adapting research processes to ensure that studies have regard for the advice of community members about the issues that affect them. Researchers have much to gain by committing time and resources to engaging communities in reciprocal ways in research processes.

The present study was an evaluation of the effectiveness of Deadly Choices™ community events for improving participants' short-term knowledge of chronic disease and risk factors, and increasing community engagement with local health services. Surveys were completed directly before and after participating in health education activities (pre and post surveys, respectively) assessing knowledge of chronic diseases and risk factors at three Deadly Choices community events and four National Aboriginal and Islander Day Observance Committee (NAIDOC) events in south-east Queensland where Deadly Choices health education activities took place. An audit trail was conducted at two Deadly Choices community events in Brisbane to identify the proportion of participants who undertook a health screen at the event who then followed up for a Medicare-funded health check (MBS item 715) or other appointment at an Aboriginal and Torres Strait Islander clinic in the local area within 2 months. Results were compared with a sample of participants who attended one Deadly Choices community event but did not complete a health screen. There were 472 community members who completed a pre and post survey. All knowledge scores significantly improved between baseline and follow up. Although based on a small sample, the audit trail results suggest individuals who participated in a health screen at the community day were approximately twice as likely to go back to a clinic to receive a full health check or have an alternative appointment compared with attendees who did not participate in a screen. Community events that include opportunities for health education and health screening are an effective strategy to improve chronic disease health literacy skills and appear to have the potential to increase community engagement with local Aboriginal and Torres Strait Islander health services.

Items in clusters, such as patients of the same clinician or teeth within the same patient, tend to be more similar than items from different groups. This within-group similarity, represented by the intraclass correlation coefficient (ICC), reduces precision, yielding less statistical power and wider confidence intervals, compared with non-clustered samples of the same size. This must be considered in the design of studies including clusters. We present ICC estimates from a study of 7,826 restorations placed in previously unrestored tooth surfaces of 4,672 patients by 222 clinicians in the National Dental Practice-Based Research Network, as a resource for sample size planning in restorative studies. Our findings suggest that magnitudes of ICCs in practice-based research can be substantial. These can have large effects on precision and the power to detect treatment effects. Generally, we found relatively large ICCs for characteristics that are influenced by clinician choice (e.g., 0.36 for rubber dam use). ICCs for outcomes within individual patients, such as tooth surfaces affected by a caries lesion, tended to be smaller (from 0.03 to 0.15), but were still sufficiently large to substantially affect statistical power. Clustering should be taken into account in the design of oral health studies and derivation of statistical power estimates for these studies (ClinicalTrials.gov, NCT00847470).

Community-based participatory research (CBPR) has emerged to bridge the gap between research and primary-care practice through community engagement and social action to increase health equity. It is widely acknowledged that access to high-quality primary care services is important to the overall health of a community. Here, CBPR studies in a primary care setting are reviewed to assess the use of CBPR associated with common health problems seen in primary care such as access to care and disparities in chronic disease management across vulnerable populations. CBPR involves building relationships with local communities, determining areas of need and establishing priorities for health concerns. Studies showing improved access to care for a Hispanic population, reduced asthma symptoms and weight loss are highlighted.

Background: Saliva is one of the intraoral host factors that influence caries development. The authors conducted a study to investigate whether salivary characteristics are associated with recent dental caries experience., Methods: Dentist-investigators and dental staff members collected data pertaining to a two-year cumulative incidence of dental caries (previous 24 months) and salivary characteristics during baseline assessment in an ongoing longitudinal study. The systematic random sample consisted of patients (n = 1,763) visiting general dental practices (n = 63) within the Northwest Practice-based REsearch Collaborative in Evidence-based DENTistry (PRECEDENT). The authors estimated adjusted rate ratios (RRs) by using generalized estimating equations log-linear regression to relate salivary characteristics to coronal carious lesions into dentin., Results: Low resting pH (≤ 6.0) in the overall sample and low stimulated salivary flow rate (≤ 0.6 milliliter/minute) in older adults (≥ 65 years old) were associated with increased dental caries (RR, 1.6; 95 percent confidence interval [CI], 1.1-2.2; RR, 2.4; 95 percent CI, 1.5-3.8, respectively). Low buffering capacity was associated with decreased dental caries in children and adolescents (RR, 0.3; 95 percent CI, 0.1-1.0; RR, 0.2; 95 percent CI, 0.1-0.7, respectively). A thick, sticky or frothy salivary consistency also was associated with decreased dental caries in adults (RR, 0.6; 95 percent CI, 0.4-1.0). Associations between other salivary characteristics and dental caries for the overall sample and within each age group were not statistically significant., Conclusions: Salivary characteristics were associated weakly with previous dental caries experience, but the authors did not find consistent trends among the three age groups. Different salivary characteristics were associated with an increased caries experience in older adults and a lowered caries experience in children and adolescents and adults. Practical Implications. Further investigations are needed in this population setting to understand the study's conflicting results. The study findings cannot support the use of salivary tests to determine caries risk in actual clinical settings.

Background: The prevalence of dentin hypersensitivity is uncertain, yet appropriate diagnosis and treatment of dentin hypersensitivity require accurate knowledge regarding its prevalence. The authors conducted a study to estimate the prevalence of dentin hypersensitivity in general dental practices and to investigate associated risk factors., Methods: The authors conducted a cross-sectional survey of 787 adult patients from 37 general dental practices within Northwest Practice-based Research Collaborative in Evidence-based DENTistry (PRECEDENT). Dentin hypersensitivity was diagnosed by means of participants' responses to a question regarding pain in their teeth and gingivae, and practitioner-investigators conducted a clinical examination to rule out alternative causes of pain. Participants recorded their pain level on a visual analog scale and the Seattle Scales in response to a one-second air blast. The authors used generalized estimating equation log-linear models to estimate the prevalence and the prevalence ratios., Results: The prevalence of dentin hypersensitivity was 12.3 percent; patients with hypersensitivity had, on average, 3.5 hypersensitive teeth. The prevalence of dentin hypersensitivity was higher among 18- to 44-year olds than among participants 65 years or older; it also was higher in women than in men, in participants with gingival recession than in those without gingival recession and in participants who underwent at-home tooth whitening than in those who did not. Hypersensitivity was not associated with obvious occlusal trauma, noncarious cervical lesions or aggressive toothbrushing habits., Conclusions: One in eight participants from general practices had dentin hypersensitivity, which was a chronic condition causing intermittent, low-level pain. Patients with hypersensitivity were more likely to be younger, to be female and to have a high prevalence of gingival recession and at-home tooth whitening., Practical Implications: Given dentin hypersensitivity's prevalence, clinicians should diagnose it only after investigating all other possible sources of pain.

Objective: Cervical cancer is a preventable disease which causes significant morbidity and mortality, particularly in developing countries. Although technology for early detection continues to improve, prevention programs suffer from significant barriers. Community-based participatory research is an approach to research which focuses on collaboration with the community to surmount these barriers. The objective of this study was to evaluate the utility of community-based participatory research techniques in a mother-child screen/treat and vaccinate program for cervical cancer prevention in Manchay, Peru., Materials and Methods: Human papillomavirus (HPV) self-sampling and cryotherapy were used for the screen/treat intervention, and the Gardasil vaccine was used for the vaccine intervention. Community health workers from Manchay participated in a 3-day educational course, designed by the research team. The community health workers then decided how to implement the interventions in their community. The success of the program was measured by (1) the ability of the community health workers to determine an implementation plan, (2) the successful use of research forms provided, (3) participation and retention rates, and (4) satisfaction of the participants., Results: (1) The community health workers used a door-to-door approach through which participants were successfully registered and both interventions were successfully carried out; (2) registration forms, consent forms, and result forms were used correctly with minimal error; (3) screen/treat intervention: 97% of registered participants gave an HPV sample, 94% of HPV-positive women were treated, and 90% returned for 6-month follow-up; vaccine intervention: 95% of registered girls received the first vaccine, 97% of those received the second vaccine, and 93% the third; (4) 96% of participants in the screen/treat intervention reported high satisfaction., Conclusions: Community-based participatory research techniques successfully helped to implement a screen/treat and vaccinate cervical cancer prevention program in Manchay, Peru. These techniques may help overcome barriers to large-scale preventive health-care interventions.

Introduction: If climate change is the 21st Century's biggest public health threat, research faces the major challenge of providing adequate evidence for vulnerable communities to adapt to the health effects of climate change. Available information about best practice in climate adaptation suggests it is inclusive of socio-economic disadvantage and local community factors such as access to health services. Since 1995, at least 19 164 papers have been published on climate change in the health sciences and social sciences. This body of literature has not yet been systematically examined for how well it serves rural communities., Methods: The ultimate aim of the study was to contribute to better understandings about what climate adaptation research has been done and is needed for rural communities. The two research questions were: 'What kinds of content define climate change research in disciplines that could potentially contribute to adaptation for health?' and 'How is content about rural and Aboriginal communities and best practice in adaptation related to this content?' A quantitative content analysis was performed using 'computational linguistics' Leximancer software. The analysis included 19 164 health and social sciences abstracts, batched by years, from 1 January 1995 to 31 July 2012. The relative frequency and co-occurrence of 52 concepts in these abstracts were mapped, as well as associations with positive or negative sentiment for selected concepts., Results: Aboriginal' concepts tend to be relatively infrequent (3% and 5% overall likelihood of occurrence, respectively) and are more associated with socio-economic concepts in the social sciences than the health sciences. Multiple concepts in the health sciences literature are typically connected with 'disease' and ultimately 'science' storylines, with a 38% likelihood of paired co-occurrence of 'health' and 'disease' concepts alone. The social sciences appear more focused on the local and particular issues of community in climate change than the health sciences. 'Rural' and 'Aboriginal' concepts have increased by 1% across both discipline areas, since 2011 for the 'rural' concept and since 2004 for the 'Aboriginal' concept. 'Health' concepts in the health sciences and 'economic' concepts in the social sciences, as well as 'urban' concepts, are referred to more positively than either the 'rural' or 'Aboriginal' concepts., Conclusions: While care needs to be taken in interpreting the results of this study too negatively for rural and Aboriginal communities, they suggest that a disease focus dominates climate and health research typically unconnected to wider socio-economic and human system factors. This finding needs to be considered in light of the accumulating evidence of the importance of such contextual systemic factors in understanding climate and health effects and responses. The study adds some support to the view that a key priority is bringing the learnings of applied community-based researchers, from those in rural health to those in the social sciences, to climate research. There is a need to build confidence, including in the rural health sector which has arguably been slow to participate in programs of climate change research, that community-based research could make a difference to rural health in a climate-changing world.

Major types of empirical errors reviewed by a number of leading research textbooks include discussions of Type I and Type II errors. However, applied human service researchers can commit other types of errors that should be avoided. The potential benefits of the applied, collaborative research (in contrast to traditional participatory research) include an assurance that the study begins with the "right" questions that are important for community residents. Such research practice also helps generate useful research findings for decisions regarding redistribution of resources and resolving community issues. The aim of collaborative research is not merely to advance scientific understanding, but also to produce empirical findings that are usable for addressing priority needs and problems of distressed communities. A review of a case example (Garfield Community Assessment Study) illustrates the principles and practices of collaborative research.