Discovering Stories Data Might Be Telling: Collaborative Research as Leadership, and Lessons Learned in Promoting a Culture of Evidence

Author(s):  
Jane McIntosh Cooper ◽  
Laura Turchi ◽  
Margaret Kuczynski
Author(s):  
Andrew Binet ◽  
Vedette Gavin ◽  
Leigh Carroll ◽  
Mariana Arcaya

One impediment to expanding the prevalence and quality of community-engaged research is a shortage of instructive resources for collaboratively designing research instruments and analyzing data with community members. This article describes how a consortium of community residents, grassroots community organizations, and academic and public institutions implemented collaborative research design and data analysis processes as part of a participatory action research (PAR) study investigating the relationship between neighborhoods and health in the greater Boston area. We report how nine different groups of community residents were engaged in developing a multi-dimensional survey instrument, generating and testing hypotheses, and interpreting descriptive statistics and preliminary findings. We conclude by reflecting on the importance of balancing planned strategies for building and sustaining resident engagement with improvisational facilitation that is responsive to residents’ characteristics, interests and needs in the design and execution of collaborative research design and data analysis processes.


2017 ◽  
Vol 11 (2) ◽  
pp. 39-47 ◽  
Author(s):  
Laura Rueda ◽  
Martin Fenner ◽  
Patricia Cruse

Data are the infrastructure of science and they serve as the groundwork for scientific pursuits. Data publication has emerged as a game-changing breakthrough in scholarly communication. Data form the outputs of research but also are a gateway to new hypotheses, enabling new scientific insights and driving innovation. And yet stakeholders across the scholarly ecosystem, including practitioners, institutions, and funders of scientific research are increasingly concerned about the lack of sharing and reuse of research data. Across disciplines and countries, researchers, funders, and publishers are pushing for a more effective research environment, minimizing the duplication of work and maximizing the interaction between researchers. Availability, discoverability, and reproducibility of research outputs are key factors to support data reuse and make possible this new environment of highly collaborative research. An interoperable e-infrastructure is imperative in order to develop new platforms and services for to data publication and reuse. DataCite has been working to establish and promote methods to locate, identify and share information about research data. Along with service development, DataCite supports and advocates for the standards behind persistent identifiers (in particular DOIs, Digital Object Identifiers) for data and other research outputs. Persistent identifiers allow different platforms to exchange information consistently and unambiguously and provide a reliable way to track citations and reuse. Because of this, data publication can become a reality from a technical standpoint, but the adoption of data publication and data citation as a practice by researchers is still in its early stages. Since 2009, DataCite has been developing a series of tools and services to foster the adoption of data publication and citation among the research community. Through the years, DataCite has worked in a close collaboration with interdisciplinary partners on these issues and we have gained insight into the development of data publication workflows. This paper describes the types of different actions and the lessons learned by DataCite. 


2020 ◽  
pp. 233-250
Author(s):  
Osamu Murao

Abstract Having experienced firsthand the catastrophic Great East Japan Earthquake and Tsunami of 2011, Tohoku University founded the International Research Institute of Disaster Science (IRIDeS) in 2012. IRIDeS staff, with a broad array of relevant specializations, conducts world-class research on disaster science and disaster mitigation in collaboration with organizations from many countries. As a member of IRIDeS, Prof. Osamu Murao, the founder and manager of the International Strategy for Disaster Mitigation Laboratory (ISDM), has conducted several international collaborative research projects. This chapter briefly reports on the activities of the IRIDeS and ISDM and highlights key factors for successful international collaborative research and exchange experiences with other countries. The author recounts his initial collaborative research experience in a long-term project examining Taiwan’s recovery from the impact of the 1999 Chi-Chi Earthquake which was the foundation of the international research collaboration at ISDM. The chapter concludes with a summary of the valuable lessons learned from the author’s participation in this research.


2007 ◽  
Vol 3 ◽  
pp. 117693510700300 ◽  
Author(s):  
Ashokkumar A. Patel ◽  
John R. Gilbertson ◽  
Louise C. Showe ◽  
Jack W. London ◽  
Eric Ross ◽  
...  

Background The Pennsylvania Cancer Alliance Bioinformatics Consortium (PCABC, http://www.pcabc.upmc.edu ) is one of the first major project-based initiatives stemming from the Pennsylvania Cancer Alliance that was funded for four years by the Department of Health of the Commonwealth of Pennsylvania. The objective of this was to initiate a prototype biorepository and bioinformatics infrastructure with a robust data warehouse by developing a statewide data model (1) for bioinformatics and a repository of serum and tissue samples; (2) a data model for biomarker data storage; and (3) a public access website for disseminating research results and bioinformatics tools. The members of the Consortium cooperate closely, exploring the opportunity for sharing clinical, genomic and other bioinformatics data on patient samples in oncology, for the purpose of developing collaborative research programs across cancer research institutions in Pennsylvania. The Consortium's intention was to establish a virtual repository of many clinical specimens residing in various centers across the state, in order to make them available for research. One of our primary goals was to facilitate the identification of cancer-specific biomarkers and encourage collaborative research efforts among the participating centers. Methods The PCABC has developed unique partnerships so that every region of the state can effectively contribute and participate. It includes over 80 individuals from 14 organizations, and plans to expand to partners outside the State. This has created a network of researchers, clinicians, bioinformaticians, cancer registrars, program directors, and executives from academic and community health systems, as well as external corporate partners - all working together to accomplish a common mission. The various sub-committees have developed a common IRB protocol template, common data elements for standardizing data collections for three organ sites, intellectual property/tech transfer agreements, and material transfer agreements that have been approved by each of the member institutions. This was the foundational work that has led to the development of a centralized data warehouse that has met each of the institutions’ IRB/HIPAA standards. Results Currently, this “virtual biorepository” has over 58,000 annotated samples from 11,467 cancer patients available for research purposes. The clinical annotation of tissue samples is either done manually over the internet or semi-automated batch modes through mapping of local data elements with PCABC common data elements. The database currently holds information on 7188 cases (associated with 9278 specimens and 46,666 annotated blocks and blood samples) of prostate cancer, 2736 cases (associated with 3796 specimens and 9336 annotated blocks and blood samples) of breast cancer and 1543 cases (including 1334 specimens and 2671 annotated blocks and blood samples) of melanoma. These numbers continue to grow, and plans to integrate new tumor sites are in progress. Furthermore, the group has also developed a central web-based tool that allows investigators to share their translational (genomics/proteomics) experiment data on research evaluating potential biomarkers via a central location on the Consortium's web site. Conclusions The technological achievements and the statewide informatics infrastructure that have been established by the Consortium will enable robust and efficient studies of biomarkers and their relevance to the clinical course of cancer.


Author(s):  
Lawrence P. Chao ◽  
Irem Tumer ◽  
Kosuke Ishii

This report describes the state of design observed at NASA and collaborative research between NASA and Stanford University into improving design practices. Just as there are many types of missions and projects, there are many types of design practices and reviews at NASA. Through exploration of the NASA life-cycle across the organization and deeper case studies of specific missions, the goal of this work is to identify best practices and lessons learned from NASA’s review experience, benchmark against industry techniques, and develop methodologies to improve the process. By introducing design process error-proofing methods based on FMEA and QFD into the NASA framework, more robust corrective actions and solutions can better detect and prevent design errors. This paper demonstrates the methods through retroactive exploration and implementation on the Mars Climate Orbiter.


IDS Bulletin ◽  
2019 ◽  
Vol 50 (1) ◽  
Author(s):  
Maria Kett ◽  
Mark T. Carew ◽  
John-Bosco Asiimwe ◽  
Richard Bwalya ◽  
Anderson Gitonga ◽  
...  

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