Community-driven Initiative Research Articles

Building Power on "Mass&Cass": A Community-Centered Approach to Addressing Health Resource Gaps for Persons Experiencing Homelessness in Boston, MA, 2021.

In November 2021, two grassroots organizations in Boston, Massachusetts-a housing and health justice organization and a student-led nonprofit-established an initiative to provide persons experiencing homelessness (PEH) near the Massachusetts Avenue and Melnea Cass Boulevard ("Mass&Cass") intersection in Boston with access to free COVID-19 education and other wrap-around services. They partnered with hospitals, public health organizations, and advocacy groups to make this happen. This community-driven initiative serves as a model for how to enact a sustainable pipeline for PEH to receive health resources and information, with the voices of those directly impacted at the center. (Am J Public Health. 2024;114(9):870-873. https://doi.org/10.2105/AJPH.2024.307713).

A community-driven approach to enhancing the quality and interpretability of microscopy images.

Scientific publications in the life sciences regularly include image data to display and communicate revelations about cellular structure and function. In 2016, a set of guiding principles known as the 'FAIR Data Principles' were put forward to ensure that research data are findable, accessible, interoperable and reproducible. However, challenges still persist regarding the quality, accessibility and interpretability of image data, and how to effectively communicate microscopy data in figures. This Perspective article details a community-driven initiative that aims to promote the accurate and understandable depiction of light microscopy data in publications. The initiative underscores the crucial role of global and diverse scientific communities in advancing the standards in the field of biological images. Additionally, the perspective delves into the historical context of scientific images, in the hope that this look into our past can help ongoing community efforts move forward.

Knowledge, Attitudes, and Beliefs of Medical Students Toward Transgender Healthcare: A Community-Driven Initiative.

Introduction Transgender patients face substantial systemic healthcare barriers and inadequate care from providers who often demonstrate clinical gaps in the medical needs of the transgender community. Providing interventions in which affirming transgender healthcare is explored, is crucial to delivering competent transgender-patient care and building compassionate physician-patient relationships. The Northeast Pennsylvania (NEPA) Trans Health Conference was established to address the growing need for an educational forum where transgender people could voice their narratives. In this educational intervention study, changes in the knowledge, attitudes, and beliefs about the psychosocial and medical needs of the transgender community in first-year undergraduate medical students were examined pre- and post-trans health conference attendance. Materials and methods In the late spring of both 2018 and 2019, first-year medical students attended the NEPA Trans Health Conference, hosted by the Geisinger Commonwealth School of Medicine (GCSOM). Student knowledge, attitudes, and beliefs, regarding the healthcare needs of the transgender community were evaluated prior to and directly after the conference (intervention). Though the surveys shared thematic similarities, the 2018 and 2019 surveys were different and thus were not used comparatively. Results In 2018, 35.24% of first-year medical students (37/105 participants) completed both the pre- and post-survey. Overall, 62.5% (5/8) of survey items yielded significant differences. In 2019, 25.5%, of first-year medical students (28/110 participants) completed both the pre- and post-surveyand 47.6% (9/21) of survey items yielded significant results. Overall, although the majority of first-year medical students displayed positive attitudes towardtrans people pre-intervention, the students also demonstrated increased knowledge, empathy, and understanding of the transgender healthcare narrative post-intervention. Conclusion Providing medical students with a humanistic intervention within the medical curriculum that is focused on the transgender person, in addition to their past and present healthcare experiences, offers a bridge between academic content and providing inclusive gender-affirming healthcare to all patients.

Decentralized Autonomous Organization (DAO): The case of MakerDAO

The global adoption and diffusion of cryptocurrencies and blockchain technologies has given rise to a new form of organizing referred to as decentralized autonomous organizations (DAO). Many DAOs sit at the intersection between decentralized blockchain technologies and finance, so-called decentralized finance (DeFi). This teaching case focuses on one of the most prominent and established DeFi DAOs, MakerDAO, a community-driven initiative that leverages blockchain technology to create a stablecoin pegged to the US Dollar as a basis for decentralized financial services such as lending and yield generation. The case describes the delicate balancing act between centralization and decentralization in the evolution of MakerDAO. It can be used in graduate business programs to achieve the following learning objectives: (1) Understand the concept of decentralized autonomous organization (DAO) as a new form of organizing in which communities leverage blockchain technologies and community-based principles to work jointly on a common goal, (2) Be able to assess the benefits and risks of novel decentralized finance (DeFi) models, such as MakerDAO, which offer alternative financial tools and resources that are not controlled by traditional financial institutions, (3) Evaluate the potential and pathway for disruptive innovation in the era of blockchain, cryptocurrencies, and Web3, where decentralized applications (dapps) on blockchain networks enable decentralized and trustless transactions and interactions.

The Acinetobacter baumannii website (Ab-web): a multidisciplinary knowledge hub, communication platform, and workspace.

Acinetobacter baumannii is a Gram-negative bacterium increasingly implicated in hospital-acquired infections and outbreaks. Effective prevention and control of such infections are commonly challenged by the frequent emergence of multidrug-resistant strains. Here we introduce Ab-web (https://www.acinetobacterbaumannii.no), the first online platform for sharing expertise on A. baumannii. Ab-web is a species-centric knowledge hub, initially with 10 articles organized into two main sections, 'Overview' and 'Topics', and three themes, 'epidemiology', 'antibiotic resistance', and 'virulence'. The 'workspace' section provides a spot for colleagues to collaborate, build, and manage joint projects. Ab-web is a community-driven initiative amenable to constructive feedback and new ideas.

The Deep Ocean Observing Strategy: Addressing Global Challenges in the Deep Sea Through Collaboration

AbstractThe Deep Ocean Observing Strategy (DOOS) is an international, community-driven initiative that facilitates collaboration across disciplines and fields, elevates a diverse cohort of early career researchers into future leaders, and connects scientific advancements to societal needs. DOOS represents a global network of deep-ocean observing, mapping, and modeling experts, focusing community efforts in the support of strong science, policy, and planning for sustainable oceans. Its initiatives work to propose deep-sea Essential Ocean Variables; assess technology development; develop shared best practices, standards, and cross-calibration procedures; and transfer knowledge to policy makers and deep-ocean stakeholders. Several of these efforts align with the vision of the UN Ocean Decade to generate the science we need to create thedeepocean we want. DOOS works toward (1) ahealthy and resilient deepocean by informing science-based conservation actions, including optimizing data delivery, creating habitat and ecological maps of critical areas, and developing regional demonstration projects; (2) apredicted deepocean by strengthening collaborations within the modeling community, determining needs for interdisciplinary modeling and observing system assessment in the deep ocean; (3) anaccessible deepocean by enhancing open access to innovative low-cost sensors and open-source plans, making deep-ocean data Findable, Accessible, Interoperable, and Reusable, and focusing on capacity development in developing countries; and finally (4) aninspiring and engaging deepocean by translating science to stakeholders/end users and informing policy and management decisions, including in international waters.

QUAREP-LiMi: A community-driven initiative to establish guidelines for quality assessment and reproducibility for instruments and images in light microscopy.

A modern day light microscope has evolved from a tool devoted to making primarily empirical observations to what is now a sophisticated , quantitative device that is an integral part of both physical and life science research. Nowadays, microscopes are found in nearly every experimental laboratory. However, despite their prevalent use in capturing and quantifying scientific phenomena, neither a thorough understanding of the principles underlying quantitative imaging techniques nor appropriate knowledge of how to calibrate, operate and maintain microscopes can be taken for granted. This is clearly demonstrated by the well-documented and widespread difficulties that are routinely encountered in evaluating acquired data and reproducing scientific experiments. Indeed, studies have shown that more than 70% of researchers have tried and failed to repeat another scientist's experiments, while more than half have even failed to reproduce their own experiments. One factor behind the reproducibility crisis of experiments published in scientific journals is the frequent underreporting of imaging methods caused by a lack of awareness and/or a lack of knowledge of the applied technique. Whereas quality control procedures for some methods used in biomedical research, such as genomics (e.g. DNA sequencing, RNA-seq) or cytometry, have been introduced (e.g. ENCODE), this issue has not been tackled for optical microscopy instrumentation and images. Although many calibration standards and protocols have been published, there is a lack of awareness and agreement on common standards and guidelines for quality assessment and reproducibility. In April 2020, the QUality Assessment and REProducibility for instruments and images in Light Microscopy (QUAREP-LiMi) initiative was formed. This initiative comprises imaging scientists from academia and industry who share a common interest in achieving a better understanding of the performance and limitations of microscopes and improved quality control (QC) in light microscopy. The ultimate goal of the QUAREP-LiMi initiative is to establish a set of common QC standards, guidelines, metadata models and tools, including detailed protocols, with the ultimate aim of improving reproducible advances in scientific research. This White Paper (1) summarizes the major obstacles identified in the field that motivated the launch of the QUAREP-LiMi initiative; (2) identifies the urgent need to address these obstacles in a grassroots manner, through a community of stakeholders including, researchers, imaging scientists, bioimage analysts, bioimage informatics developers, corporate partners, funding agencies, standards organizations, scientific publishers and observers of such; (3) outlines the current actions of the QUAREP-LiMi initiative and (4) proposes future steps that can be taken to improve the dissemination and acceptance of the proposed guidelines to manage QC. To summarize, the principal goal of the QUAREP-LiMi initiative is to improve the overall quality and reproducibility of light microscope image data by introducing broadly accepted standard practices and accurately captured image datametrics.

QUAREP-LiMi: a community endeavor to advance quality assessment and reproducibility in light microscopy.

The community-driven initiative Quality Assessment and Reproducibility for Instruments & Images in Light Microscopy (QUAREP-LiMi) wants to improve reproducibility for light microscopy image data through quality control (QC) management of instruments and images. It aims for a common set of QC guidelines for hardware calibration and image acquisition, management and analysis.

Inter-regional digital forensic knowledge management: needs, challenges, and solutions.

Increasing demand for digital evidence in criminal investigations is driving decentralization of forensic capabilities closer to the crime scene. Law enforcement agencies are struggling to keep pace with technological developments, cybercrime growth, and scientific advances. In federated environments, digital forensic knowledge and practices vary widely across regions. To reduce delays, wasted resources, missed opportunities, mistakes, and misinterpretations, there is a pressing need to balance the democratization of digital forensic capabilities with knowledge management and sharing between decentralized regions. There are multiple forms of knowledge to be managed, including procedural, technical, investigative, scientific, behavioral, crime analysis, and forensic intelligence. In addition, there are multiple knowledge producers and consumers, including police investigators, digital forensic practitioners, criminal intelligence analysts, attorneys, and judges. Knowledge management becomes even more challenging when multiple interdependent regions are involved, speaking different languages. Taking all of these factors into consideration, this work presents an inter-regional knowledge management solution for improving the quality, consistency, reliability, efficiency, cost-effectiveness, and return on investment of digital forensic capabilities. The basis of this work is a community-driven initiative of Swiss regional police authorities. Interviews were conducted with 15 digital forensic units to determine their current knowledge management practices and needs. The results were then generalized into a prioritized set of requirements for inter-regional digital forensic knowledge management that may be applicable in other countries. These requirements were used to evaluate knowledge management platforms, and one was selected. Implementation, operations, and maintenance challenges of an inter-regional digital forensic knowledge management platform are discussed.

The establishment of a Norwegian node in RDA

Norway has been selected as a new national node in RDA (Research Data Alliance). Until the end of the project in May 2020, the node will be engaging with research communities, supporting national agendas, and contributing to the EU Open Science Strategy to ensure capillary uptake of RDA principles and outputs. Moreover, they will be working to increase the participation in RDA nationally.
 The Norwegian RDA node (NO-RDA) will be run by a consortium of seven partners, each of them with specific roles in the activities around the node, and led by NSD - Norwegian Centre for Research Data. NO-RDA will focus on supporting the implementation of RDA outputs and recommendations and on areas of strategic importance for the Nordic region, such as Data Management Plans, FAIR Data Stewardship and management of sensitive data in research within the framework of current international and statutory regulations.
 In addition to NSD the node consists of NTNU, UiB, UiO, UiT, Unit og Uninett/Sigma2.
 The Research Data Alliance (RDA) was launched as a community-driven initiative in 2013 by the European Commission, the United States Government's National Science Foundation and National Institute of Standards and Technology, and the Australian Government’s Department of Innovation with the goal of building the social and technical infrastructure to enable open sharing and re-use of data.
 RDA has a grass-roots, inclusive approach covering all data lifecycle stages, engaging data producers, users and stewards, addressing data exchange, processing, and storage. It has succeeded in creating the neutral social platform where international research data experts meet to exchange views and to agree on topics including social hurdles on data sharing, education and training challenges, data management plans and certification of data repositories, disciplinary and interdisciplinary interoperability, as well as technological aspects.

The value of the scholarly-led, non-profit business model to achieve Open Access and scholarly publishing beyond APC

Keynote presentation.
 The prevailing science communication system has showed little success in making science a global, participatory and equitable conversation. At the same time, a very robust ecosystem of science communication has been built in the Latin-American region, one that is intrinsically open, non-commercial and academy-owned. However, this “regional” approach has remained outside the legitimated channels of scholarly communication.
 In Latin America, more than 2000 universities are publishing journals under the principle of science as a common and public good. Around half of them are public institutions which means that public budget is being heavily invested in sustaining non-commercial Open Access.
 AmeliCA, a multi-institutional community-driven initiative supported by UNESCO and led by Redalyc and CLACSO, seeks a cooperative, sustainable, protected and non-commercial solution for Open Knowledge. AmeliCA is taking the 16-year experience and technological resources from Redalyc to strengthen non-profit publishing beyond the region.
 AmeliCA’s and Redalyc’s approach is based on the fact that scholarly communication in control of the academy is a strategy much healthier and sustainable for the development of science and society. Why is it that commercial publishers are a pivotal actor in science communication – in many parts of the world – if the biggest part of activities concerning the generation of knowledge is in the academy?
 Academy owned publishing seems not to exist in the mainstream databases (Web of Science and Scopus). So, it is strategic for the research community and libraries to join forces, as well as share and connect individual efforts to build a cooperative infrastructure, in order to guarantee that publishing is led by the scholarly community and that its openness is sustainable. The research community and libraries should also work together in the reshaping of how research is assessed, in order to give the non-profit academy-owned scholarly communications their place. All must be leveraged with technology to find more effective methods of communication and deployment of the knowledge generated by different regions, disciplinary fields or languages.

An Intersectional Technofeminist Framework for Community-Driven Technology Innovation

In this article, we describe the philosophy, objectives, and development of Multilingual User-Experience (Multilingual UX), a community-driven initiative for supporting technology innovation with marginalized communities. We highlight how community-based mentorship can guide innovative technology design through an intersectional technofeminist perspective. We begin with a discussion of the impetus for building this initiative before discussing how we are collaboratively designing a research center to facilitate technology design with and for marginalized communities. We both theorize and enact the intersectional technofeminist principles of our work by telling the story of our project with our collaborators and community partners, in the form of vignettes from a symposium. We conclude by looking ahead to our next steps and by offering strategies for intersectional technofeminist community building and technology innovation, in the hope that our experiences can be further developed and localized to support similar initiatives that highlight the value of feminist collaboration in technology design.

Preferences for rural specialist health care in the treatment of Parkinson's disease: exploring the role of community-based nursing specialists.

People living with Parkinson's disease (PWPD) in rural areas have limited access to local condition-specific care. This paper examines the healthcare preferences of PWPD living in rural areas and how a community-driven initiative to employ a movement disorder nurse (MDN) functioned to address barriers to health services access. A qualitative design facilitated an understanding of how interactions with the health system shaped PWPD and their carer's experiences of living in a regional community. A total of 42 semi-structured interviews were conducted 6-9 months apart; 19 interviews with PWPD and 23 dyadic interviews. The findings support the contention that specialist care can be effectively delivered through allied health professionals in some settings. In particular, having access to a specialist MDN can cushion the effects of living with Parkinson's disease in regional and rural areas where continuity of care and access to timely support is often difficult for people to find. The quality of social support provided by the MDN may increase people's ability to cope in the face of an unpredictable disease course. This is consistent with prior research, which identified that a specialist nurse or allied health services for people living with chronic conditions is enhances quality of life.

Environmental impact assessment of uranium exploration and development on indigenous land in Labrador (Canada): a community-driven initiative.

There is hardly any study on environmental impacts of uranium exploration and mining development prior to actual mining activities. Rather, the majority of the literature addresses the environmental impacts of either ongoing or decommissioned mines. The objective of the study was to measure the possible radioactive contamination (total uranium and lead) in the local ecosystem surrounding an abandoned uranium development site on indigenous land in Labrador (Canada). Water (brook and ponds), soil/sediments (brook and ponds), plants (growing along the brook and pond shores), and local fish (trout) and clams from bays were collected from mine development site, downstream, and control sites. Uranium and lead mobilization in the local environment appears to be slightly enhanced near the proposed mining site, but rapidly drops downstream. Developing a low-cost, community-based environmental health monitoring tool is an ideal strategy for generating baseline information and further follow-up.

EukRef: Phylogenetic curation of ribosomal RNA to enhance understanding of eukaryotic diversity and distribution.

Environmental sequencing has greatly expanded our knowledge of micro-eukaryotic diversity and ecology by revealing previously unknown lineages and their distribution. However, the value of these data is critically dependent on the quality of the reference databases used to assign an identity to environmental sequences. Existing databases contain errors and struggle to keep pace with rapidly changing eukaryotic taxonomy, the influx of novel diversity, and computational challenges related to assembling the high-quality alignments and trees needed for accurate characterization of lineage diversity. EukRef (eukref.org) is an ongoing community-driven initiative that addresses these challenges by bringing together taxonomists with expertise spanning the eukaryotic tree of life and microbial ecologists, who use environmental sequence data to develop reliable reference databases across the diversity of microbial eukaryotes. EukRef organizes and facilitates rigorous mining and annotation of sequence data by providing protocols, guidelines, and tools. The EukRef pipeline and tools allow users interested in a particular group of microbial eukaryotes to retrieve all sequences belonging to that group from International Nucleotide Sequence Database Collaboration (INSDC) (GenBank, the European Nucleotide Archive [ENA], or the DNA DataBank of Japan [DDBJ]), to place those sequences in a phylogenetic tree, and to curate taxonomic and environmental information for the group. We provide guidelines to facilitate the process and to standardize taxonomic annotations. The final outputs of this process are (1) a reference tree and alignment, (2) a reference sequence database, including taxonomic and environmental information, and (3) a list of putative chimeras and other artifactual sequences. These products will be useful for the broad community as they become publicly available (at eukref.org) and are shared with existing reference databases.

Outreach Strategies to Recruit Low-Income African American Men to Participate in Health Promotion Programs and Research: Lessons From the Men of Color Health Awareness (MOCHA) Project.

African American men continue to bear a disproportionate share of the burden of disease. Engaging these men in health research and health promotion programs—especially lower-income, African American men who are vulnerable to chronic disease conditions such as obesity and heart disease—has historically proven quite difficult for researchers and public health practitioners. The few effective outreach strategies identified in the literature to date are largely limited to recruiting through hospital clinics, churches, and barbershops. The Men of Color Health Awareness (MOCHA) project is a grassroots, community-driven initiative that has developed a number of innovative outreach strategies. After describing these strategies, we present data on the demographic and health characteristics of the population reached using these methods, which indicate that MOCHA has been highly effective in reaching this population of men.

Practicing Community-Based Truku (Indigenous) Language Policy: Reflection on Dialogue and Collaboration

This study focuses on one Truku (Indigenous) village in eastern Taiwan and aims to understand the processes and possibilities of bottom-up language policy formation and implementation. In 2012, the first author assisted the villagers to start a community-driven language revitalization initiative. Drawing on scholarship guided by critical Indigenous research methodologies, and critical sociocultural approaches to language policy and planning, this paper continues the conversation about the complex and dynamic processes of collaboration and relationship building in developing bottom-up language revitalization. Affirming the role of relationship in collaboration, the study argues that it is the dialogue of individuals’ intersecting social positions that makes relationship building possible. The newly developed relationship further transforms each other’s position(s) in praxis. As the dichotomy between the researched and the researchers is blurred, the authors further argue that the relationship comes along with responsibility, challenging the silenced dialogue of “exiting” in traditional research ethics. Methodologically, this study contributes to the scholarship of language policy and planning by exploring an alternative, democratic, humanizing way of doing language policy and planning research that prioritizes local knowledge, voice, and engagement. Additionally, drawn from Indigenous epistemology, the recognition of human relationships in praxis critically features the affective dimension of LPP, offering a more holistic and developmental understanding of the process.

A Community-Level Assessment of Barriers to Preventive Health Behaviors Among Culturally Diverse Men.

There are significant gender disparities in health outcomes and health care utilization in the United States, with men experiencing more of these disparities. It is critical to ascertain the interplay between societal conditions, health behaviors, and access to services and the impact of these factors on health outcomes and utilization of health care. The present study is part of a larger initiative titled, The Men's Health Study: Addressing Healthy Lifestyle Behaviors, which has two purposes-to annually assess the motivators of and barriers to health-promoting behaviors among culturally diverse men attending the Men's Health Forum (MHF) and to use this information to develop an intervention program that facilitates healthy lifestyle behaviors among men. The MHF is a community-driven initiative for medically underserved men in Tampa, Florida that offers free health screenings and wellness exhibitors in order to empower men to lead a healthy lifestyle. The purpose of this article is to identify barriers to engaging in health-smart behaviors (e.g., cancer screenings, physical activity) among culturally diverse men who participated in the MHF and to detect any demographic differences among these barriers. A total of 254 men participated in the study. Findings identify that age was the only demographic variable that had a statistically significant association with any of the cancer-screening barriers. Some cancer-screening barriers appear to exist among all demographic groups since no statistical demographic differences were discovered. Income and education were significantly associated with barriers to engaging in health-smart behaviors. This may give researchers, health educators, and providers information needed to customize interventions to promote health and preventive health care among culturally diverse men.

More Than Just Test Scores

In this case, Sharon Rowley, a veteran principal, volunteers to participate in a new community-driven accountability initiative and encounters dilemmas about what it means to be a “data-driven” instructional leader. This case provides an opportunity for aspiring school leaders to explore and apply data-use theory to the work of leading for instructional improvement, with a specific focus on using new accountability metrics intended to leverage broader conceptions of supporting students’ academic and social well-being. The teaching notes at the end of the case guide readers to consider the leadership demands of responding to the professional and market challenges that emerge from using and communicating about accountability metrics and data-use interventions more generally.

Future of Art Bibliography Initiative: Charting a New Future

AbstractArt and architectural scholars have long relied on a set of discipline-based bibliographic resources to support their research. In recent years, the dissolution of some of these resources coupled with shifts in research interest have prompted leaders in the field to redefine what is meant by a disciplinary bibliography and to seek an innovative approach for creating a flexible future domain-based bibliography of research literature in all its traditional and emergent forms. Librarians, scholars, publishers, and information technologists have gathered to participate in an international community-driven initiative that envisions a global approach to an ever-evolving definition of what is meant by “bibliography” and, as a practical matter, to form the Future of Art Bibliography (FAB) Initiative. The goal has been to develop a better understanding of current bibliographic and research challenges and to envision proactively a new collective roadmap for supporting art historical research going forward.