Community-driven Research Research Articles

Building partnerships for linking biomedical science with traditional knowledge of customary medicines: a case study with two Australian Indigenous communities

BackgroundCustomary medicine of Australia’s Indigenous peoples draws upon knowledge developed through millennia of interaction with Australia’s unique flora and fauna. Many Indigenous Australians are interested in developing modern medicinal and commercial translations of traditional knowledge; however, barriers of trust and benefit sharing often thwart progress.MethodsUsing a participatory action research framework, university researchers collaborated with members of two Australian Indigenous communities to investigate selected medicinal plants and locally made bush products. A trusted community liaison facilitated the collaboration that was fostered through bilateral site visits. Material transfer and confidentiality agreements ensured that the plant materials were only used for the agreed purpose. Plain language written reports of the laboratory results were provided to the communities with follow up discussions.ResultsIn case study 1, only some of the traditional uses for the raw plants were shared with the researchers. Deidentified plants were assessed for antioxidant and antimicrobial properties. In case study 2, the plant names, traditional uses, and preparation methods were shared with the aim of learning more about their plants, potential uses, and optimising their bush products. Literature reviews were conducted that also helped guide in vitro testing of the crude and solvent partitioned extracts. These differences reflected the community’s reasons for conducting the research and intellectual property considerations. In both cases, observed benefits included building trust and strengthening working relationships for ongoing collaboration, fostering enthusiasm for linking traditional and scientific knowledge, promoting cross-cultural learning about scientific methods and traditional medicine, maintaining the relevance of traditional knowledge in the modern world, and initiating community discussions around their bush medicine product development.ConclusionsCommunity-driven scientific investigation of traditional medicinal knowledge can facilitate culturally meaningful outcomes, with potentially wide-reaching direct and indirect benefits. Community liaisons were invaluable for establishment of strong relationships and ensured that the research was culturally and locally appropriate. The need for clearer guidelines and regulation around community-driven biomedical research of their plants was identified. Australia would benefit from a user-friendly, open-source toolkit that promotes use of local traditional medicines, contains information about processes and protocols that communities and scientists could use to develop collaborative projects, and guides regulation and ethical commercialisation. Close consultation and collaboration with communities and researchers will be needed to ensure that such a toolkit is culturally appropriate and fit-for-purpose.

Community-driven epidemiologic research: Guiding principles

Increasingly, public health research standards call for engaging communities who live with health issues under investigation to help ensure that results translate into effective public health measures. Here, we share guiding principles for community-driven epidemiologic research developed over a decade conducting research sought and controlled by participating communities. These principles provide a roadmap for epidemiologic research that effectively addresses community priorities while meeting academic standards: research questions are developed collaboratively in community-university partnerships; knowledge takes shape from information donated by participants through methods that turn information into scientifically useful data and analysis that reveals data patterns that address research questions; thus, knowledge is generated collaboratively by academic researchers and community partners; academic researchers are bound by ethical, professional, scientific, contractual, and other legal standards to be responsible stewards of information donated by participants; community review protocols ensure that interpretation and presentation of research results reflect the voices of all partners; meaningful community review creates the trust needed for open access to research results as required of academic researchers; all partners share credit for achievements. Lacking models for operationalizing these principles, we developed specific guidelines for research project initiation, data use, authorship, acknowledgment, and data dissemination. Conventions in academia present formidable challenges to effective community engagement and are often at odds with calls from community organizations and funding agencies to conduct research driven by community priorities and values. We hope others can benefit from time and effort we have spent crafting solutions that bridge this divide.

The Truth Fairy Project

TPS 621: Exposure to metals, Johan Friso Foyer, Floor 1, August 26, 2019, 3:00 PM - 4:30 PM Background/ Aim: Lead (Pb) is a potent neurotoxicant with no safe level of exposure. Elevated levels of Pb and arsenic (As) are found near facilities that recycle lead-acid batteries in the United States. Assessing historical exposure to toxic chemicals, especially in situations of a specific industrial source of pollution affecting a community, is critical for informing appropriate public health and policy responses. We describe a community-driven approach to integrate retrospective environmental hazard exposure assessment with community organizing to address concerns about the extent of exposure to toxic metals in a predominantly working-class, Latinx community living near a now-closed lead-acid battery smelter facility. Methods: In this pilot study coined the “Truth Fairy” Project, 50 shed deciduous teeth from 43 children living their entire lives within 2 miles of the smelter to understand in retrospective exposure to toxic metals using community-driven research approach. Concentrations of Pb and As in teeth were assessed using laser-ablation-inductively coupled plasma-mass spectrometry. Soil Pb concentrations were determined using spatial kriging of surface soil measurements. Results: The mean prenatal calcium normalized Pb concentration in teeth samples (reported as a ratio 208Pb:43Ca), was 4.104 x 10-4 (SD 4.123 x 10-4), and the mean postnatal 208Pb:43Ca level was 4.109 x 10-4 (SD 3.369 x 10-4). Adjusted for maternal education and analytical batch, we observe positive significant relationship between prenatal teeth Pb per 100 ppm increase in soil Pb (β=3.48, 95% CI 1.11, 5.86), indicating higher Pb exposures near the site of industrial exposure. Study results were disseminated to the community using infographics. Conclusions: The Truth Fairy study provides insights into assessing retrospective exposure to toxic metals among children living near legacy sources. This project integrated community mobilization with empirical research, informing residents about toxic metal exposures and improving the community’s capacity to respond to a public health crisis.

Piloting the use of mobile devices in community-driven research to assess occupational and environmental exposures from industrial hog operations in rural eastern North Carolina, USA

Piloting the use of mobile devices in community-driven research to assess occupational and environmental exposures from industrial hog operations in rural eastern North Carolina, USA

Waimānalo Pono Research Hui: A Community-Academic Partnership to Promote Native Hawaiian Wellness through Culturally Grounded and Community-Driven Research and Programming.

Although Hawai'i is often portrayed as an idyllic paradise and is recognized as one of the healthiest States in the United States, pervasive health disparities exist among Native Hawaiians. Similar to other indigenous populations across the globe, these disparities are linked to unjust social and economic policies rooted in colonization and historical trauma. Western-centric efforts to address these disparities have yielded limited results. Consequently, indigenous frameworks to decolonize western-centric research processes have emerged. The Waimānalo Pono Research Hui is an example of a community-academic partnership that uses indigenous methodologies and principles of community-based participatory research as the foundation to engage Native Hawaiian community members in research. Monthly gatherings are held where community members and academic researchers share a meal and discuss community priorities with the goal of shaping research and programming that are rooted in Native Hawaiian values. A mission for the group has been created as well as protocols for community engagement to ensure all projects that work with the Waimānalo Pono Research Hui are ethically sound and grounded in the community's preferences, cultural knowledge, and lived experiences. Our community members continually report that the Waimānalo Pono Research Hui has positively transformed their perception of and willingness to engage in research. Similarly, university students and academic researchers express how much their knowledge about working with communities has grown and inspired them. Creating spaces for communities and researchers to build authentic relationships and engage in ongoing conversations can promote culturally grounded and community-driven research and programming.

Antibiotic dispensation rates among participants in community-driven health research projects in Arctic Canada

BackgroundCommunity-driven projects that aim to address public concerns about health risks from H. pylori infection in Indigenous Arctic communities (estimated H. pylori prevalence = 64%) show frequent failure of treatment to eliminate the bacterium. Among project participants, treatment effectiveness is reduced by antibiotic resistance of infecting H. pylori strains, which in turn, is associated with frequent exposure to antibiotics used to treat other infections. This analysis compares antibiotic dispensation rates in Canadian Arctic communities to rates in urban and rural populations in Alberta, a southern Canadian province.MethodsProject staff collected antibiotic exposure histories for 297 participants enrolled during 2007–2012 in Aklavik, Tuktoyaktuk, and Fort McPherson in the Northwest Territories, and Old Crow, Yukon. Medical chart reviews collected data on systemic antibiotic dispensations for the 5-year period before enrolment for each participant. Antibiotic dispensation data for urban Edmonton, Alberta (average population ~ 860,000) and rural northern Alberta (average population ~ 450,000) during 2010–2013 were obtained from the Alberta Government Interactive Health Data Application.ResultsAntibiotic dispensation rates, estimated as dispensations/person-years (95% confidence interval) were: in Arctic communities, 0.89 (0.84, 0.94); in Edmonton, 0.55 (0.55, 0.56); in rural northern Alberta, 0.63 (0.62, 0.63). Antibiotic dispensation rates were higher in women and older age groups in all regions. In all regions, the highest dispensation rates occurred for β-lactam and macrolide antibiotic classes.ConclusionsThese results show more frequent antibiotic dispensation in Arctic communities relative to an urban and rural southern Canadian population.

Waimānalo Pono Research Hui: Establishing Protocols and Rules of Engagement to Promote Community-Driven and Culturally-Grounded Research with a Native Hawaiian Community

AbstractResearch processes that are centered on western models and rooted in colonisation and racism can have deleterious effects upon disenfranchised groups, such as people of colour and indigenous communities. Community-centred and culturally-grounded processes are necessary to achieve meaningful participation and engagement in research by creating equitable protocols and ensuring beneficial outcomes. Such processes are particularly needed in indigenous populations, including the Hawaiian community. This article describes the participatory development of the community engagement protocols and rules of engagement created by a community and academic partnership called the Waimānalo Pono Research Hui (WPRH). Through monthly gatherings, academic and community partners engaged in discussions of constructing community programmes and developing research protocols that are rooted in Hawaiian wholistic values of health and well-being with indigenous methodologies. A final set of protocols and rules of engagement was developed through an iterative feedback process that was rooted not only in community-based participatory (CBPR) principles but also Hawaiian values, beliefs and way of life. Challenges and future directions are also presented.

The Future of Empirical Finance

Empirical Finance is in crisis: Our most important discovery tool is historical simulation, and yet, most backtests and time series analyses published in journals are flawed. The problem is well-known to professional organizations of Statisticians and Mathematicians, who have publicly criticized the misuse of mathematical tools among Finance researchers. In this note I point to three problems and propose four practical solutions. In an attempt to overcome the challenges posed by multiple testing and selection bias, I emphasize the need to move from an individual-centric to a community-driven research paradigm. Low retraction rates can be corrected through technologies that derive “peer p-values”. Stronger theoretical foundations and closer ties with financial firms would help prevent false discoveries.

Lead and Arsenic in Shed Deciduous Teeth of Children Living Near a Lead-Acid Battery Smelter.

Lead (Pb) is a potent neurotoxicant with no safe level of exposure. Elevated levels of Pb and arsenic (As) are found in the air and soil near facilities that recycle lead-acid batteries in the United States. In urban Los Angeles County, California, a facility processed ∼11 million batteries per year and operated for decades without proper environmental review. Measuring Pb and As in shed deciduous teeth is a promising technique to assess prenatal and early life exposure. In this pilot study coined the "Truth Fairy" Project, 50 shed deciduous teeth from 43 children living their entire lives within 2 miles of the smelter were analyzed to understand retrospective exposure to toxic metals using a community-driven research approach. Concentrations of Pb and As in teeth were assessed using laser-ablation-inductively coupled plasma-mass spectrometry. Soil Pb concentrations were determined using spatial kriging of surface soil measurements. The mean prenatal calcium normalized Pb levels in teeth samples (reported as a ratio 208Pb:43Ca) was 4.104 × 10-4 (SD 4.123 × 10-4), and the mean postnatal 208Pb:43Ca level was 4.109 × 10-4 (SD 3.369 × 10-4). Adjusted for maternal education and batch, we observe positive significant relationship between prenatal teeth Pb per 100 ppm increase in soil Pb (β = 3.48, 95% CI 1.11, 5.86). The Truth Fairy study suggests prenatal and early life exposure to toxic metals is associated with legacy soil contamination in an urban community near a smelter.

A database seed for a community-driven material intensity research platform

The data record contains Material Intensity data for buildings (MI). MI coefficients are often used for different types of analysis of socio-economic systems and in particular for environmental assessments. Until now, MI values were compiled and reported ad-hoc with few cross-study comparisons. We extracted and converted more than 300 material intensity data points from 33 studies and provide the results in a comprehensive and harmonized database. Material intensity is reported as kilograms per gross floor area for 32 materials as primary data points. Furthermore, we augmented the data with secondary attributes for regional information, such as climate and socioeconomic indicators. The data are hosted on the version control platform GitHub using accessible data formats and providing detailed contribution guidelines. This “database seed” facilitates data analysis, accessibility, and future data contributions by the research community. In the Technical Validation we illustrate that consistency of the data and opportunities for further analysis. This database can serve scientists from various disciplines as a benchmark to determine typical ranges and identify outliers.

Engaging Northern Indigenous Children through Drawing for Community Health Research: A Picture of the Social Impact of H. pylori Infection in Fort McPherson in the Northwest Territories, Canada

An analysis of drawings made by Indigenous children in the Arctic hamlet of Fort McPherson, Canada, serves the dual purpose of contributing children’s perspectives to community-driven research on H. pylori infection, and demonstrating the utility of employing visual approaches for research involving school-aged children. Insights into their knowledge, attitudes, and experiences relating to this infection yielded important insights for knowledge translation with primary-care providers. Results may be utilized within the broader research program to improve approaches to delivering care for H. pylori infection, by helping to integrate community members’ perspectives into the ideologies of primary-care providers.

Community Science as a Pathway for Resilience in Response to a Public Health Crisis in Flint, Michigan

While the story of the Flint water crisis has frequently been told, even sympathetic analyses have largely worked to make invisible the significant actions of Flint residents to protect and advocate for their community. Leaving the voices of these stakeholders out of narratives about the crisis has served to deepen distrust in the community. Our project responds to these silences through a community-driven research study aimed explicitly at elevating the frame of Flint residents in and around the Flint water crisis. This paper describes the coming together of the research team, the overall project design for each of the three research efforts, and lessons learned. The three sub-projects include: (1) a qualitative analysis of community sentiment provided during 17 recorded legislative, media, and community events, (2) an analysis of trust in the Flint community through nine focus groups across demographic groups (African American, Hispanic, seniors, and youth) of residents in Flint, and (3) an analysis of the role of the faith-based community in response to public health crises through two focus groups with faith based leaders from Flint involved with response efforts to the water crisis. Our study offers insight for understanding trust in crisis, which could be valuable to other communities and researchers seeking to address similar situations. The project offers community science as a model for considering community engagement in research as part of the process of resilience.

Community-based participatory research (CBPR): Towards equitable involvement of community in psychology research.

Community-based participatory research (CBPR) answers the call for more patient-centered, community-driven research approaches to address growing health disparities. CBPR is a collaborative research approach that equitably involves community members, researchers, and other stakeholders in the research process and recognizes the unique strengths that each bring. The aim of CBPR is to combine knowledge and action to create positive and lasting social change. With its origins in psychology, sociology, and critical pedagogy, CBPR has become a common research approach in the fields of public health, medicine, and nursing. Although it is well aligned with psychology's ethical principles and research aims, it has not been widely implemented in psychology research. The present article introduces CBPR to a general psychology audience while considering the unique aims of and challenges in conducting psychology research. In this article, we define CBPR principles, differentiate it from a more traditional psychology research approach, retrace its historical roots, provide concrete steps for its implementation, discuss its potential benefits, and explore practical and ethical challenges for its integration into psychology research. Finally, we provide a case study of CBPR in psychology to illustrate its key constructs and implementation. In sum, CBPR is a relevant, important, and promising research framework that may guide the implementation of more effective, culturally appropriate, socially just, and sustainable community-based psychology research. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Prefiguring Sustainability through Participatory Action Research Experiences for Undergraduates: Reflections and Recommendations for Student Development

PAR-based UREs are undergraduate research experiences (UREs)—built into university-community partnerships—that apply principles of participatory action research (PAR) towards addressing community-defined challenges. In this paper, we advance PAR-based UREs as an action-oriented framework through which higher education institutions can simultaneously enact and advance the United Nations sustainable development agenda, while cultivating student development. We draw upon interdisciplinary scholarship on sustainable development and PAR, as well as empirical findings from a pilot program, to accomplish dual goals. First, through the lens of six Sustainable Development Goal (SDG) clusters, we explore the synergies between undergraduate PAR engagement and sustainable development, explaining how PAR-based UREs can prefigure and facilitate SDG achievement by promoting cross-sector collaboration and supporting diverse stakeholder engagement through community-driven research and action. Second, within each SDG cluster, we offer complementary reflections and recommendations around the design and implementation of PAR-based UREs towards advancing students’ skills and abilities as: (1) Community Collaborators (and Learners); (2) Community-Engaged Researchers; (3) (Interdisciplinary) Scholars; (4) Agents of Change; (5) (Sustainable) Co-Innovators; and (6) Institutional Representatives. Finally, we discuss the critical role of higher education institutions in minimizing structural barriers to PAR-based URE implementation, given their prefigurative and practical potential for both SDG achievement and student development.

Activism and scientific research: 20\xa0years of community action by the Vancouver area network of drug users

BackgroundOver 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.MethodsIn 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.ResultsAfter 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.ConclusionsPeer-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.

Commentary: Building an Evidence Base for Promoting Informed Prostate Cancer Screening Decisions: An Overview of a Cancer Prevention and Control Program

African American (AA) men have significantly higher mortality rates from prostate cancer (PrCA) than other racial groups. Therefore, there is a critical need to identify strategies for promoting informed PrCA screening decisions among this population. This article details the community-driven, social and behavioral research being implemented by a Statewide Cancer Prevention and Control Program (CPCP) to support the development of person-to-person and technological interventions to improve the dissemination of PrCA information to AA men and their families. This article concludes with four recommendations to advance future research and practice related to the use of interventions for promoting informed PrCA decision-making among AAs. These recommendations include: 1) informing men about controversial screening recommendations; 2) including families in educational interventions about PrCA; 3) using technology as a modality for disseminating PrCA information when appropriate; and 4) aiming to create interventions that can be translated into community and clinical settings.

Reports of the AAAI 2016 Spring Symposium Series

The Association for the Advancement of Artificial Intelligence, in cooperation with Stanford University's Department of Computer Science, presented the 2016 Spring Symposium Series on Monday through Wednesday, March 21-23, 2016 at Stanford University. The titles of the seven symposia were (1) AI and the Mitigation of Human Error: Anomalies, Team Metrics and Thermodynamics; (2) Challenges and Opportunities in Multiagent Learning for the Real World (3) Enabling Computing Research in Socially Intelligent Human-Robot Interaction: A Community-Driven Modular Research Platform; (4) Ethical and Moral Considerations in Non-Human Agents; (5) Intelligent Systems for Supporting Distributed Human Teamwork; (6) Observational Studies through Social Media and Other Human-Generated Content, and (7) Well-Being Computing: AI Meets Health and Happiness Science.

Practical Applications of Recent Trends in Empirical Finance Author:

The exact conditions of even a single day of trading cannot be reproduced by researchers, and thus it is difficult for academics to apply a scientific method in finance. By overlooking or covering up biases and errors in research findings, those who publish research on financial markets make it more difficult to discover, or at least approximate, the truth. In Recent Trends in Empirical Finance , Marcos Lopez de Prado of Guggenheim Partners and Lawrence Berkeley National Laboratory provides a look at data on publications in financial economics and advocates for collaboration and coordination between industry players, regulatory bodies and educational institutions. Lopez de Prado argues that a community-driven research paradigm would make use of modern technologies and toolkits and foster industry—university collaboration.

A safe place to reflect on the meaning of recovery: a recovery community co-productive approach using multimedia interviewing technology

Purpose– The purpose of this paper is to develop further the understanding of co-productive methodological practice for substance use research by demonstrating the use of a mobile, multimedia interviewing aid by members of a UK recovery community.Design/methodology/approach– A co-productive approach to data collection was piloted using a bespoke, audio-visual booth located in a range of recovery and community-focused social events. Audio-visual data were collaboratively selected, curated and analysed by recovery community partners and researchers.Findings– Findings illustrate how a mobile audio-visual booth can be used successfully within co-productive research. This approach facilitated a better understanding of the experiences and practices of self-reflection within the recovery community as they worked together to create a meaningful recovery largely independent of conventional recovery services.Research limitations/implications– This research was performed with one cohort of co-production members. However, the co-productive nature of the enquiry and the rich data this provided invites the making of cautious but firmer claims with regard to the transferability of this approach to similar recovery contexts.Social implications– Co-productive approaches confer a meaningful impact upon members of the recovery community, and wider understanding of this approach will promote an impact upon others engaging in recovery, supporting growth of a practice-based and theoretically underpinned evidence base.Originality/value– This study highlights use of digital technologies within co-productive community-based methodologies, reducing reliance upon academic expertise, and facilitating participant leadership in research. The analysis also signposts new areas for scholarly discussion in the area of co-productive, community-driven research.

Retail food environments research: Promising future with more work to be done.

As members of the scientific committee for the Food Environments in Canada conference, we reflect on the current state of food environments research in Canada. We are very encouraged that the field is growing and there have been many collaborative efforts to link researchers in Canada, including the 2015 Food Environments in Canada Symposium and Workshop. We believe there are 5 key challenges the field will need to collectively address: theory and causality; replication and extension; consideration of rural, northern and vulnerable populations; policy analysis; and intervention research. In addressing the challenges, we look forward to working together to conduct more sophisticated, complex and community-driven food environments research in the future.