Community-driven Research Research Articles

Implementing a Community-Driven Research Partnership: The Backyard Initiative Community Health Survey Methods and Approach.

Background: In community-based participatory research (CBPR), issues such as creating a setting where community members drive decisions and creating culturally relevant processes remain largely underachieved. The Backyard Initiative (BYI) provided the setting for implementing a community-centered collaborative research process. The BYI is a partnership between Allina Health, the Cultural Wellness Center (CWC), and community residents to improve health. Objectives: To describe the unique community-centered method used in the 2013 BYI Community Health Survey (CHS) as a viable approach for collecting meaningful and valid health related data. With this approach, the community operates as the agent of change rather than the target. Methods: At the core was the BYI assessment team, which brought together conventional researchers and community members to collaboratively design, implement, analyze, interpret, and disseminate the CHS results. Focusing on the CHS, this structure and process permitted and facilitated important and difficult discussions about approach, content and outcomes of the research. Results: We held seven sessions (239 participants). Participants were 37% African American/African and 34% Native American, 65% female, and 72% spoke English at home. Achievement of our recruitment goals, participation of groups typically underrepresented in research, and positive community feedback were indications that the BYI approach to survey research was successful. Conclusions: The BYI CHS community-centered methods built trust among research partners and participants, engaged populations often underrepresented in research, and collected meaningful data. Our success indicates that it is possible to co-design and implement a lengthy survey to inform future research and community activities.

Implementing a Community-Driven Research Partnership: The Backyard Initiative Community Health Survey Methods and Approach

In community-based participatory research (CBPR), issues such as creating a setting where community members drive decisions and creating culturally relevant processes remain largely underachieved. The Backyard Initiative (BYI) provided the setting for implementing a community-centered collaborative research process. The BYI is a partnership between Allina Health, the Cultural Wellness Center (CWC), and community residents to improve health. To describe the unique community-centered method used in the 2013 BYI Community Health Survey (CHS) as a viable approach for collecting meaningful and valid health related data. With this approach, the community operates as the agent of change rather than the target. At the core was the BYI assessment team, which brought together conventional researchers and community members to collaboratively design, implement, analyze, interpret, and disseminate the CHS results. Focusing on the CHS, this structure and process permitted and facilitated important and difficult discussions about approach, content and outcomes of the research. We held seven sessions (239 participants). Participants were 37% African American/African and 34% Native American, 65% female, and 72% spoke English at home. Achievement of our recruitment goals, participation of groups typically underrepresented in research, and positive community feedback were indications that the BYI approach to survey research was successful. The BYI CHS community-centered methods built trust among research partners and participants, engaged populations often underrepresented in research, and collected meaningful data. Our success indicates that it is possible to co-design and implement a lengthy survey to inform future research and community activities.

Community-Driven Research Agenda to Reduce Health Disparities.

This paper describes how a new regional campus of an academic health center engaged in a community-based participatory research (CBPR) process to set a community-driven research agenda to address health disparities. The campus is situated among growing Marshallese and Hispanic populations that face significant health disparities. In 2013, with support from the Translational Research Institute, the University of Arkansas for Medical Sciences Northwest began building its research capacity in the region with the goal of developing a community-driven research agenda for the campus. While many researchers engage in some form of community-engaged research, using a CBPR process to set the research agenda for an entire campus is unique. Utilizing multiple levels of engagement, three research areas were chosen by the community: (1) chronic disease management and prevention; (2) obesity and physical activity; and (3) access to culturally appropriate healthcare. In only 18 months, the CBPR collaboration had dramatic results. Ten grants and five scholarly articles were collaboratively written and 25 community publications and presentations were disseminated. Nine research projects and health programs were initiated. In addition, many interprofessional educational and service learning objectives were aligned with the community-driven agenda resulting in practical action to address the needs identified.

Recent Trends in Empirical Finance

Empirical finance is in crisis. The profession’s most important discovery tool is historical simulation; yet, according to the author, most backtests and time series analyses published in journals are flawed. The problem is well known to professional statistics and mathematics organizations, which have publicly criticized the misuse of mathematical tools among finance researchers. In this article, the author points to three problems and proposes four practical solutions. In an attempt to overcome the challenges posed by multiple testing and selection bias, the author emphasizes the need to move from an individual-centric to a community-driven research paradigm. Technologies that derive peer P-values can correct low retraction rates. Stronger theoretical foundations and closer ties with financial firms would help prevent false discoveries.

Growing up in the Kayamandi Township: II. Sport as a setting for the development and transfer of desirable competencies

With calls for increasing accountability in sport programmes, it is critical for researchers to rigorously examine how sport can contribute to the development of young people. This study was designed as an attempt to understand the nature of sport and sport-based youth development in the community of the Kayamandi Township in South Africa. Three topics related to sport-based youth development in a South African Xhosa township were examined: (a) required competencies for young people to develop in order to have a happy and productive life; (b) competencies acquired by young people through sport participation; and (c) transferable competencies from the sport domain into the everyday lives of young people. A phenomenological methodology was used by gathering participants’ perceptions and meanings through semi-structured interviews. Individual interviews were conducted with 10 coaches, 11 community members, and 19 athletes, with the data analysed through independent comprehensive inductive content analysis with constant comparison and critical reflection. The results of this investigation identified specific competencies developed through sport and transferred out of the sport domain, including the southern African philosophy of ubuntu (e.g. respect and caring for others), self-concept, self-discipline, and group skills. These competencies may help young people prepare to overcome the challenges of growing up in this community. The community-driven nature of the study allowed culturally relevant topics to emerge from the data, thus highlighting the need for community-driven research and programmes with widespread community involvement.

Community perspectives on the risk of indoor air pollution arising from contaminated groundwater.

The migration of volatile contaminants into overlying buildings, known as vapor intrusion, is a health concern for people living above contaminated groundwater. As public health and environmental agencies develop protocols to evaluate vapor intrusion exposure, little attention has been paid to the experiences and opinions of communities likely to be affected by vapor intrusion. Using a community-driven research approach and qualitative interviews, we explored community perspectives on the vapor intrusion pathway and the perceived impact on community health and well-being among neighbors living atop a large, shallow-chlorinated solvent plume in San Antonio, TX. Most participants associated vapor intrusion with health risks, expressing concern about the unavoidable and uncontrollable nature of their exposure. Few were satisfied with the responsiveness of public officials. Above all, participants wanted more accurate, transparent information and additional independent scientific investigations.

Vision 2020 measures University of New Mexico's success by health of its state.

The University of New Mexico Health Sciences Center (UNMHSC) adopted a new Vision to work with community partners to help New Mexico make more progress in health and health equity than any other state by 2020. UNMHSC recognized it would be more successful in meeting communities' health priorities if it better aligned its own educational, research, and clinical missions with their needs. National measures that compare states on the basis of health determinants and outcomes were adopted in 2013 as part of Vision 2020 target measures for gauging progress toward improved health and health care in New Mexico. The Vision focused the institution's resources on strengthening community capacity and responding to community priorities via pipeline education, workforce development programs, community-driven and community-focused research, and community-based clinical service innovations, such as telehealth and "health extension." Initiatives with the greatest impact often cut across institutional silos in colleges, departments, and programs, yielding measurable community health benefits. Community leaders also facilitated collaboration by enlisting University of New Mexico educational and clinical resources to better respond to their local priorities. Early progress in New Mexico's health outcomes measures and state health ranking is a promising sign of movement toward Vision 2020.

Community-driven research on environmental sources of H. pylori infection in arctic Canada

The role of environmental reservoirs in H. pylori transmission remains uncertain due to technical difficulties in detecting living organisms in sources outside the stomach. Residents of some Canadian Arctic communities worry that contamination of the natural environment is responsible for the high prevalence of H. pylori infection in the region. This analysis aims to estimate associations between exposure to potential environmental sources of biological contamination and prevalence of H. pylori infection in Arctic Canada.Using data from 3 community-driven H. pylori projects in the Northwest and Yukon Territories, we estimated effects of environmental exposures on H. pylori prevalence, using odds ratios (OR) and 95% confidence intervals (CI) from multilevel logistic regression models to adjust for household and community effects. Investigated exposures include: untreated drinking water; livestock; dogs; cats; mice or mouse droppings in the home; cleaning fish or game.Our analysis did not identify environmental exposures associated clearly with increased H. pylori prevalence, except any exposure to mice or mouse droppings (OR = 4.6, CI = 1.2–18), reported by 11% of participants. Our multilevel models showed H. pylori clustering within households, but environmental exposures accounted for little of this clustering; instead, much of it was accounted for by household composition (especially: having infected household members; number of children).Like the scientific literature on this topic, our results do not clearly implicate or rule out environmental reservoirs of H. pylori; thus, the topic remains a priority for future research. Meanwhile, H. pylori prevention research should seek strategies for reducing direct transmission from person to person.

Engaging a Chemical Disaster Community: Lessons from Graniteville

Community engagement remains a primary objective of public health practice. While this approach has been adopted with success in response to many community health issues, it is rarely adopted in chemical disaster response. Empirical research suggests that management of chemical disasters focuses on the emergency response with almost no community engagement for long-term recovery. Graniteville, an unincorporated and medically underserved community in South Carolina was the site of one of the largest chlorine exposures by a general US population. Following the immediate response, we sought community participation and partnered with community stakeholders and representatives in order to address community-identified health and environmental concerns. Subsequently, we engaged the community through regular town hall meetings, harnessing community capacity, forming coalitions with existing local assets like churches, schools, health centers, and businesses, and hosting community-wide events like health picnics and screenings. Information obtained from these events through discussions, interviews, and surveys facilitated focused public health service which eventually transitioned to community-driven public health research. Specific outcomes of the community engagement efforts and steps taken to ensure sustainability of these efforts and outcomes will be discussed.

1029 Community-Driven Research on Helicobacter pylori Infection in the Canadian Arctic: the Fort Mcpherson H. pylori Project

Background: The Canadian North Helicobacter pylori (CANHelp) Working Group conducts community Helicobacter pylori projects to address public concerns about health risks from this infection in Arctic Canada, where H.pylori prevalence and stomach cancer rates are elevated. At the request of community leaders of Fort McPherson, Northwest Territories (population~800, ~95% Aboriginal), the ongoing Fort McPherson H. pylori Project launched in 2012 to investigate the disease burden related to H.pylori infection and identify strategies for reducing related health risks. Methods: A local planning committee guided the design and implementation of the project, which includes six components: surveys of risk factors, urea breath test (UBT) screening for H. pylori infection, upper gastrointestinal endoscopy with biopsies collected and histopathology, treatment, knowledge exchange, and policy development. During 2012-13, all residents of Fort McPherson were invited to participate in UBT screening and questionnaire-based risk factor interviews; residents ≥15 years of age were invited to undergo endoscopy in temporary endoscopy units in the local health centre. Participants could also enrol in a randomized trial comparing two 10-day H.pylori therapies: sequential therapy (ST) consisted of a proton pump inhibitor (PPI) and amoxicillin for days 1-5, followed by a PPI, clarithromycin, and metronidazole for days 6-10; quadruple therapy (QT) consisted of a PPI, bismuth, metronidazole, and tetracycline for days 1-10. Treatment outcomes were classified by UBT at >=10 weeks after treatment. Results: To date, 226 residents, aged 4-98 years, have consented to participate. Parental consent and child's assent were obtained for residents <17 years of age. Of the 226 project participants, 180 have completed risk factor interviews, 217 had a UBT (positivity=59%), 53 had endoscopy with biopsies collected, 71 consented to treatment and 60 enrolled in the treatment trial, with 24 to date completing a post-treatment UBT. Of the 53 participants who had endoscopy, gastroenterologists identified gastritis in 15%, gastric ulcer in 4%, gastric erosion in 11%, duodenitis in 4%, duodenal erosion in 2%, and esophagitis in 11%. Histopathology (Sydney classification) of gastric biopsies from 53 Fort McPherson H. pylori Project participants is shown in table 1. Preliminary findings from the treatment trial to date are: 86% treatment success for participants randomized to ST (12/14; 95% CI 57%-98%) and 100% treatment success for participants randomized to QT (10/10; 95% CI 74%-100%). Discussion: These results add to evidence that shows Arctic Aboriginal communities to be disproportionately affected by H. pylori infection. The high prevalence of moderate-severe gastritis shows that public concern over risks from H. pylori infection is warranted. Histology Results

Application of a Mixed Methods Approach to Identify Community-Level Solutions to Decrease Racial Disparities in Infant Mortality.

This study aimed to identify community-level actions to decrease racial disparities in infant mortality (IM). Six urban multidisciplinary teams generated ideas for decreasing racial disparities in IM using a mixed methods concept mapping approach. Participants rated each idea as to its necessity and action potential and grouped ideas by theme. A cluster analysis produced a series of visual representations, showing relationships between the identified actions and the clustering of actions into themes. Multidimensional scaling techniques were used to produce analyses describing the necessity of and action potential for implementing the proposed ideas. Participants identified actions communities could take to decrease racial disparities in IM and suggested applications of the knowledge gained from the mapping process. Participants produced a total of 128 actions, within 11 thematic clusters, for decreasing racial disparities in IM. The thematic clusters contained a range of elements designed to promote knowledge and understanding of the relationship between health and racism; improve educational systems and community opportunities; facilitate community-driven health promotion, marketing, and research; improve health services for women; address physical and social environments that impact community health; prioritize resource allocation of community-based services; institutionalize strategies that promote equity across all systems; and create and support legislation and policies that address social determinants of health. Correlation coefficients of the clusters ranged from 0.17 to 0.90. Average necessity ratings ranged from 2.17 to 3.73; average action potential ratings ranged from 1.64 to 3.61. Findings suggest that thematic clusters with high action potential usually represented ongoing community activities or actions communities could easily initiate. Community size, existing programs, partnerships, policies, and influential advocates were among the factors cited affecting feasibility of implementation. Clusters with lower action potential require broader, longer term, policy, institutional or system-wide changes, and significant resources. High necessity clusters often contained actions perceived as essential for change, but sometimes outside of a community's control. Participants identified a number of practical actions that were considered to hold potential for individual, community, and institutional changes which could result in decreasing racial disparities in IM.

Disease manifestations of Helicobacter pylori infection in Arctic Canada: using epidemiology to address community concerns

ObjectivesHelicobacter pylori infection, linked to gastric cancer, is responsible for a large worldwide disease burden. H pylori prevalence and gastric cancer rates are elevated among indigenous Arctic communities, but implementation...

Challenges in conducting community-driven research created by differing ways of talking and thinking about science: a researcher's perspective

Increasingly, health scientists are becoming aware that research collaborations that include community partnerships can be an effective way to broaden the scope and enhance the impact of research aimed at improving public health. Such collaborations extend the reach of academic scientists by integrating a variety of perspectives and thus strengthening the applicability of the research. Communication challenges can arise, however, when attempting to address specific research questions in these collaborations. In particular, inconsistencies can exist between scientists and community members in the use and interpretation of words and other language features, particularly when conducting research with a biomedical component. Additional challenges arise from differing perceptions of the investigative process. There may be divergent perceptions about how research questions should and can be answered, and in expectations about requirements of research institutions and research timelines. From these differences, misunderstandings can occur about how the results will ultimately impact the community. These communication issues are particularly challenging when scientists and community members are from different ethnic and linguistic backgrounds that may widen the gap between ways of talking and thinking about science, further complicating the interactions and exchanges that are essential for effective joint research efforts. Community-driven research that aims to describe the burden of disease associated with Helicobacter pylori infection is currently underway in northern Aboriginal communities located in the Yukon and Northwest Territories, Canada, with the goal of identifying effective public health strategies for reducing health risks from this infection. This research links community representatives, faculty from various disciplines at the University of Alberta, as well as territorial health care practitioners and officials. This highly collaborative work will be used to illustrate, from a researcher's perspective, some of the challenges of conducting public health research in teams comprising members with varying backgrounds. The consequences of these challenges will be outlined, and potential solutions will be offered.

PrimoGENI for hybrid network simulation and emulation experiments in GENI

The Global Environment for Network Innovations (GENI) is a community-driven research and development effort to build a collaborative and exploratory network experimentation platform—a ‘virtual laboratory’ for the design, implementation, and evaluation of future networks. The PrimoGENI project enables real-time network simulation by extending an existing network simulator to become part of the GENI federation to support large-scale experiments involving physical, simulated, and emulated network entities. In this paper, we describe a novel design of PrimoGENI, which aims at supporting realistic, scalable, and flexible network experiments with real-time simulation and emulation capabilities. We present a flexible emulation infrastructure that allows both remote client machines, local cluster nodes running virtual machines, and external networks to seamlessly interoperate with the simulated network running within a designated ‘slice’ of resources. We present the results of our preliminary validation and performance studies to demonstrate the capabilities as well as limitations of our approach.

An i2b2-based, generalizable, open source, self-scaling chronic disease registry

ObjectiveRegistries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software.Materials and methodsFocusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions.ResultsThe 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA.DiscussionWe utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing.ConclusionsThe implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases.

Developing the Community Empowered Research Training Program: Building Research Capacity for Community-Initiated and Community-Driven Research

Health promotion practice research conducted by or in partnership with community-based organizations (CBOs) serving Asian Americans, Native Hawaiians, and Pacific Islanders (AA and NHPI) can address health disparities. Few CBOs have the tools to integrate or initiate research into their programmatic agenda. The New York University (NYU) Center for the Study of Asian American Health (CSAAH) and the Asian & Pacific Islander American Health Forum (APIAHF) created a partnership with the goal to support CBO research infrastructure development by creating the Community Empowered Research Training (CERT) program. A survey was conducted and discussions held with CBO leaders representing AA and NHPI communities to inform the development of the CERT program. The majority of participants are engaged in service-related research and reported interest in building their research capacity. CBOs may require help reframing how data can be collected and used to better inform programmatic activities and to address health disparities facing AA and NHPI communities. CBOs possess both an interest in and access to local knowledge that can inform health priorities. Findings have been applied to the CERT program to build capacity to support community-initiated/driven research to address health disparities affecting AAs and NHPIs.

Improving Asian American, Native Hawaiian, and Pacific Islander Health: National Organizations Leading Community Research Initiatives

Functionally, many CBPR projects operate through a model of academic partners providing research expertise and community partners playing a supporting role. To demonstrate how national umbrella organizations deeply rooted in communities, cognizant of community needs, and drawing on the insights and assets of community partners, can lead efforts to address health disparities affecting their constituents through research. Case studies of two Asian American, Native Hawaiian, and Pacific Islander national organizations. Strategically engaging a diverse range of partners and securing flexible funding mechanisms that support research were important facilitators. Main challenges included limited interest of local community organizations whose primary missions as service or health care providers may deprioritize research. Efforts to make research relevant to the work of community partners and to instill the value of research in community partners, as well as flexible funding mechanisms, may help to promote community-driven research.

Challenges created by data dissemination and access restrictions when attempting to address community concerns: individual privacy versus public wellbeing

Background : Population health data are vital for the identification of public health problems and the development of public health strategies. Challenges arise when attempts are made to disseminate or access anonymised data that are deemed to be potentially identifiable. In these situations, there is debate about whether the protection of an individual's privacy outweighs potentially beneficial public health initiatives developed using potentially identifiable information. While these issues have an impact at planning and policy levels, they pose a particular dilemma when attempting to examine and address community concerns about a specific health problem.Methods : Research currently underway in northern Canadian communities on the frequency of Helicobacter pylori infection and associated diseases, such as stomach cancer, is used in this article to illustrate the challenges that data controls create on the ability of researchers and health officials to address community concerns.Results : Barriers are faced by public health professionals and researchers when endeavouring to address community concerns; specifically, provincial cancer surveillance departments and community-driven participatory research groups face challenges related to data release or access that inhibit their ability to effectively address community enquiries. The resulting consequences include a limited ability to address misinformation or to alleviate concerns when dealing with health problems in small communities.Conclusions : The development of communication tools and building of trusting relationships are essential components of a successful investigation into community health concerns. It may also be important to consider that public wellbeing may outweigh the value of individual privacy in these situations. As such, a re-evaluation of data disclosure policies that are applicable in these circumstances should be considered.

Specific issues, exact locations: case study of a community mapping project to improve safety in a disadvantaged community

Safety is a health issue and a significant concern in disadvantaged communities. This paper describes an example of community-initiated action to address perceptions of fear and safety in a suburb in south-west Sydney which led to the development of a local, community-driven research project. As a first step in developing community capacity to take action on issues of safety, a joint resident-agency group implemented a community safety mapping project to identify the extent of safety issues in the community and their exact geographical location. Two aerial maps of the suburb, measuring one metre by two metres, were placed on display at different locations for four months. Residents used coloured stickers to identify specific issues and exact locations where crime and safety were a concern. Residents identified 294 specific safety issues in the suburb, 41.9% (n=123) associated with public infrastructure, such as poor lighting and pathways, and 31.9% (n=94) associated with drug-related issues such as drug activity and discarded syringes. Good health promotion practice reflects community need. In a very practical sense, this project responded to community calls for action by mapping resident knowledge on specific safety issues and exact locations and presenting these maps to local decision makers for further action.

Dialogical Action: Moving From Community-Based to Community-Driven Participatory Research

Proponents of community-based research advocate for the active involvement and engagement of community members, citing improved construct validity, intervention efficacy, and accountability. However, to create the conditions in which expertise is mutually constructed and in which no one is the object of research, a reconsideration of the fundamental ethos of community involvement and engagement is required. In this article, we seek to accomplish two goals: (a) to briefly assess the definitions of community health, focus groups, and dissemination that are often used in community-based research; and (b) to introduce an application of dialogical action that goes beyond traditional focus group methodology to promote the creation of an evolving and dynamic dialogue among campus and community stakeholders. An urban case study is presented.