A Framework for Global Collaborative Data Management for Malaria Research.
Ontology highlight
ABSTRACT:
SUBMITTER: Gutierrez JB
PROVIDER: S-EPMC4574270 | biostudies-literature | 2015 Sep
REPOSITORIES: biostudies-literature
Publications
A Framework for Global Collaborative Data Management for Malaria Research.
Gutierrez Juan B JB Harb Omar S OS Zheng Jie J Tisch Daniel J DJ Charlebois Edwin D ED Stoeckert Christian J CJ Sullivan Steven A SA
The American journal of tropical medicine and hygiene 20150810 3 Suppl
Data generated during the course of research activities carried out by the International Centers of Excellence for Malaria Research (ICEMR) is heterogeneous, large, and multi-scaled. The complexity of federated and global data operations and the diverse uses planned for the data pose tremendous challenges and opportunities for collaborative research. In this article, we present the foundational principles for data management across the ICEMR Program, the logistics associated with multiple aspect ...[more]
Similar Datasets
Project description:Medical libraries need to actively review their service models and explore partnerships with other campus entities to provide better-coordinated clinical research management services to faculty and researchers. TRAIL (Translational Research and Information Lab), a five-partner initiative at the University of Washington (UW), explores how best to leverage existing expertise and space to deliver clinical research data management (CRDM) services and emerging technology support to clinical researchers at UW and collaborating institutions in the Pacific Northwest.The initiative offers 14 services and a technology-enhanced innovation lab located in the Health Sciences Library (HSL) to support the University of Washington clinical and research enterprise. Sharing of staff and resources merges library and non-library workflows, better coordinating data and innovation services to clinical researchers. Librarians have adopted new roles in CRDM, such as providing user support and training for UW's Research Electronic Data Capture (REDCap) instance.TRAIL staff are quickly adapting to changing workflows and shared services, including teaching classes on tools used to manage clinical research data. Researcher interest in TRAIL has sparked new collaborative initiatives and service offerings. Marketing and promotion will be important for raising researchers' awareness of available services.Medical librarians are developing new skills by supporting and teaching CRDM. Clinical and data librarians better understand the information needs of clinical and translational researchers by being involved in the earlier stages of the research cycle and identifying technologies that can improve healthcare outcomes. At health sciences libraries, leveraging existing resources and bringing services together is central to how university medical librarians will operate in the future.
| S-EPMC6124496 | biostudies-other
Project description:Purpose Today's clinical trial partnerships frequently join multi-disciplinary investigators and stakeholders, from different countries and cultures, to conduct research with a broad array of goals. This diversity, while a strength, can also foster divergent views about priorities and what constitutes success, thereby posing challenges for management, operations, and evaluation. As a sponsor and partner in such collaborations, we seek to assist and support their development and implementation of sound research strategies, to optimize their efficiency, sustainability, and public health impact. This report describes our efforts using an adaptation of the well-established Kaplan-Norton strategy management paradigm, in our clinical trials setting. We share findings from our first test of the utility and acceptance of this approach for evaluating and managing research strategies in a collaborative clinical research partnership. Results Findings from pilot studies and our first implementation in an ongoing clinical research partnership in Liberia, provide initial support for our hypothesis that an adapted version of the Kaplan-Norton strategy management model can have use in this setting. With leadership from within the partnership, analysis artifacts were gathered, and assessments made using standardized tools. Practical feasibility, resonance of the findings with partners, and convergence with other empirical assessments lend initial support for the view that this approach holds promise for obtaining meaningful, useable results for assessing and improving clinical research management. Conclusions and Implications Engaged leadership, thoughtful timing to align with partnership planning cycles, support for the process, and an eye towards the collaboration's long-term goals appear important for developing model understanding and practice. Skepticism about evaluations, and unease at exposing weaknesses, may hinder the effort. Acceptance of findings and associated opportunities for improvement by group leadership, support a growing sense of validity. Next steps aim to test the approach in other partnerships, streamline the methodology for greater ease of use, and seek possible correlations of strategy management assessments with performance evaluation. There is hardly a better example than the COVID-19 pandemic, to spotlight the need for efficient and effective clinical research partnerships to address global health challenges. While heartened by the collaborative spirit driving the effort so far, we cannot let our enthusiasm lull us into thinking that nobility of purpose or an abundance of good will is sufficient. Careful monitoring and adjustment of clinical research strategy in response to changes (e.g., demographics, pathogen evolution, research acceptance, political and cultural environments) are vital to making the needed adjustments that can guide these programs toward successful outcomes. We hope that our work can raise awareness about the importance, relevance, and feasibility of sound strategy management in clinical research partnerships, especially during this time when there is so much at stake.
| S-EPMC8543383 | biostudies-literature
Project description:The project’s primary purpose is to establish a network of Hospice Palliative Care settings using a common and consistent method of assessing and documenting bowel functioning in order to be able to carry out future collaborative studies of constipation treatments. The secondary goal is to gather normative data on current bowel care function and outcomes of current treatments which can be used to determine sample size calculations for future controlled trials of bowel management protocols. In order to complete this goal the project requires a thorough assessment of current nursing practice in regard to bowel care.
| 2059254 | ecrin-mdr-crc
Project description:BackgroundWhen we were unable to identify an electronic data capture (EDC) package that supported our requirements for clinical research in resource-limited regions, we set out to build our own reusable EDC framework. We needed to capture data when offline, synchronize data on demand, and enforce strict eligibility requirements and complex longitudinal protocols. Based on previous experience, the geographical areas in which we conduct our research often have unreliable, slow internet access that would make web-based EDC platforms impractical. We were unwilling to fall back on paper-based data capture as we wanted other benefits of EDC. Therefore, we decided to build our own reusable software platform. In this paper, we describe our customizable EDC framework and highlight how we have used it in our ongoing surveillance programs, clinic-based cross-sectional studies, and randomized controlled trials (RCTs) in various settings in India and Ecuador.ObjectiveThis paper describes the creation of a mobile framework to support complex clinical research protocols in a variety of settings including clinical, surveillance, and RCTs.MethodsWe developed ConnEDCt, a mobile EDC framework for iOS devices and personal computers, using Claris FileMaker software for electronic data capture and data storage.ResultsConnEDCt was tested in the field in our clinical, surveillance, and clinical trial research contexts in India and Ecuador and continuously refined for ease of use and optimization, including specific user roles; simultaneous synchronization across multiple locations; complex randomization schemes and informed consent processes; and collecting diverse types of data (laboratory, growth measurements, sociodemographic, health history, dietary recall and feeding practices, environmental exposures, and biological specimen collection).ConclusionsConnEDCt is customizable, with regulatory-compliant security, data synchronization, and other useful features for data collection in a variety of settings and study designs. Furthermore, ConnEDCt is user friendly and lowers the risks for errors in data entry because of real time error checking and protocol enforcement.
| S-EPMC7453324 | biostudies-literature
Project description:Longitudinal and collaborative global health research curricula to train a well-versed global health corps through skills building in assessment and evaluation are lacking. A without-walls research curriculum was offered to medical and public health students between 2007 and 2015. Mentored cross-disciplinary research projects were developed and implemented in partnership with communities. A multilevel mixed methods design, including semi-structured interviews, post-curriculum surveys, presentations, publications, postgraduation metrics, and feedback from project sites, evaluated educational outcomes. Students (N = 25; aged 27 ± 1.9 years; 90.5% female) participated in the studies in 12 countries, resulting in 26 national-level presentations and 24 peer-reviewed publications, including per student average and range of Institutional Review Board submission (0.95; 0-3), poster presentation (0.85; 0-3), oral presentation (0.65; 0-2), and peer-reviewed submission (1.05; 0-4). On average, the studies (40% mixed methods) lasted 2 years. Analyses and manuscript writing were the most challenging; data collection and presentations were the most rewarding. Majority of the participants strongly agreed with achieving skills in community engagement, interviewing techniques, research design and implementation, research dissemination, and career development. Interview themes included expectations and learning goals, effective mentorship, impact on career goals, and ethical learning. Mentorship qualities were accessibility, real-time problem solving, research expertise, advocate, and balancing guidance with independence. Project sites' feedback was overwhelmingly positive regarding the projects' impact. Postgraduation participants hold positions in humanitarian organizations, research programs serving the underserved, and primary care residencies, fellowships, and faculty. This experience illustrates the feasibility and effectiveness of mentored global health research and underlines the crucial link between community collaboration and scholarship for effective global health practice.
| S-EPMC6221244 | biostudies-literature
Project description:We are witnessing a growing gap separating primary research data from derived data products presented as knowledge in publications. Although journals today more often require the underlying data products used to derive the results as a prerequisite for a publication, the important link to the primary data is lost. However, documenting the postprocessing steps of data linking, the primary data with derived data products has the potential to increase the accuracy and the reproducibility of scientific findings significantly. Here, we introduce the rBEFdata R package as companion to the collaborative data management platform BEFdata. The R package provides programmatic access to features of the platform. It allows to search for data and integrates the search with external thesauri to improve the data discovery. It allows to download and import data and metadata into R for analysis. A batched download is available as well which works along a paper proposal mechanism implemented by BEFdata. This feature of BEFdata allows to group primary data and metadata and streamlines discussions and collaborations revolving around a certain research idea. The upload functionality of the R package in combination with the paper proposal mechanism of the portal allows to attach derived data products and scripts directly from R, thus addressing major aspects of documenting data postprocessing. We present the core features of the rBEFdata R package along an ecological analysis example and further discuss the potential of postprocessing documentation for data, linking primary data with derived data products and knowledge.
| S-EPMC4541993 | biostudies-literature
Project description:ObjectivePatient-powered research networks (PPRNs) are a valuable source of patient-generated information. Diagnosis code-based algorithms developed by PPRNs can be used to query health plans' claims data to identify patients for research opportunities. Our objective was to implement privacy-preserving record linkage processes between PPRN members' and health plan enrollees' data, compare linked and nonlinked members, and measure disease-specific confirmation rates for specific health conditions.Materials and methodsThis descriptive study identified overlapping members from 4 PPRN registries and 14 health plans. Our methods for the anonymous linkage of overlapping members used secure Health Insurance Portability and Accountability Act-compliant, 1-way, cryptographic hash functions. Self-reported diagnoses by PPRN members were compared with claims-based computable phenotypes to calculate confirmation rates across varying durations of health plan coverage.ResultsData for 21 616 PPRN members were hashed. Of these, 4487 (21%) members were linked, regardless of any expected overlap with the health plans. Linked members were more likely to be female and younger than nonlinked members were. Irrespective of duration of enrollment, the confirmation rates for the breast or ovarian cancer, rheumatoid or psoriatic arthritis or psoriasis, multiple sclerosis, or vasculitis PPRNs were 72%, 50%, 75%, and 67%, increasing to 91%, 67%, 93%, and 80%, respectively, for members with ≥5 years of continuous health plan enrollment.ConclusionsThis study demonstrated that PPRN membership and health plan data can be successfully linked using privacy-preserving record linkage methodology, and used to confirm self-reported diagnosis. Identifying and confirming self-reported diagnosis of members can expedite patient selection for research opportunities, shorten study recruitment timelines, and optimize costs.
| S-EPMC7647185 | biostudies-literature
Project description:In the last twenty years, several global targets for protection of marine biodiversity have been adopted but have failed. The Convention on Biological Diversity (CBD) aims at preserving 10% of all the marine biomes by 2020. For achieving this goal, ecologically or biologically significant areas (EBSA) have to be identified in all biogeographic regions. However, the methodologies for identifying the best suitable areas are still to be agreed. Here, we propose a framework for applying the CBD criteria to locate potential ecologically or biologically significant seamount areas based on the best information currently available. The framework combines the likelihood of a seamount constituting an EBSA and its level of human impact and can be used at global, regional and local scales. This methodology allows the classification of individual seamounts into four major portfolio conservation categories which can help optimize management efforts toward the protection of the most suitable areas. The framework was tested against 1000 dummy seamounts and satisfactorily assigned seamounts to proper EBSA and threats categories. Additionally, the framework was applied to eight case study seamounts that were included in three out of four portfolio categories: areas highly likely to be identified as EBSA with high degree of threat; areas highly likely to be EBSA with low degree of threat; and areas with a low likelihood of being EBSA with high degree of threat. This framework will allow managers to identify seamount EBSAs and to prioritize their policies in terms of protecting undisturbed areas, disturbed areas for recovery of habitats and species, or both based on their management objectives. It also identifies seamount EBSAs and threats considering different ecological groups in both pelagic and benthic communities. Therefore, this framework may represent an important tool to mitigate seamount biodiversity loss and to achieve the 2020 CBD goals.
| S-EPMC3414466 | biostudies-literature
Project description:The number, scale and ambition of transdisciplinary research initiatives between the global north and the global south is increasing, yet there is very little theoretical or empirical scholarship on how to lead and manage implementation to promote responsible practice. Within science, technology and innovation (STI) studies and decolonising research frameworks, and utilising collaborative autoethnography, this study codifies experience with implementing the 'Revitalising Informal Settlements and their Environments' (RISE) program (2017-2020). Our specific aim is to explore the leadership and management tensions and challenges of implementing transboundary transdisciplinary research. The findings reaffirm the importance of research leaders and managers carefully operationalising north-south research by critically reflecting on power asymmetries between disciplines, partners and locations, leveraging the potential for transdisciplinary consortia to build research capabilities in the global south, and creating a culture of reflexivity on the historical and social positionality in which research is designed, funded, implemented and evaluated. The findings foreground the role of boundary-spanning 'integrators' and 'pracademics', roles that have received little attention to date but are essential for effective delivery and societal impact beyond scientific advances. A framework for implementing north-south transdisciplinary research is outlined with five domains: (1) collaborative leadership; (2) agile management; (3) flexible consortia; (4) researcher positionality; and (5) co-design and participation. The framework can support efforts for responsibly designing and implementing large, transdisciplinary, cross-country research programs in line with ambitions for decolonising north-south research.
| S-EPMC11245643 | biostudies-literature
Project description:Academic global health collaborations have the potential to improve joint understanding of health issues in low- and middle-income countries (LMICs). Our objective was to elucidate perceptions of benefits and challenges of academic global health collaborations as well as areas for improving collaborative research conducted in LMICs. This cross-sectional, mixed-methods study surveyed investigators' perceptions of benefits and challenges of pediatric academic global health collaborations. Authors of articles from four pediatric journals reporting pediatric research conducted in LMICs published between 2006 and 2015 were surveyed. Responses of LMIC investigators were compared with those of investigators in high-income countries (HICs). Responses to open-ended questions were analyzed using a combined thematic and content analysis approach. Of 1,420 potential respondents, 252 (17.7%) responded to the survey. Collaborative research with investigators from other countries was perceived as beneficial by 88.5% of respondents (n = 223), although this perception was more common among HIC respondents (n = 110, 94.0%) than LMIC respondents (n = 113, 83.7%) (p = 0.014). Sixty-seven percent (n = 170) of respondents perceived that HIC investigators had set the research agenda in work conducted in a LMIC. Respondents identified several critical factors to improve academic global health collaborations, including research capacity building, communication, and early involvement of LMIC investigators with shared decision-making during study conception and grant writing. Pediatric academic global health collaboration was widely perceived as positive. However, despite calls for capacity building and locally generated research ideas, many respondents felt that HIC investigators set the research agenda for work conducted in LMICs. This study provides suggestions for improving collaboration among pediatric academicians globally.
| S-EPMC7056414 | biostudies-literature