Search

Introduction: The Emergency Medicine Education and Research by Global Experts (EMERGE) network was formed to generate and translate evidence to improve global emergency care. We share the challenges faced and lessons learned in establishing a global research network. Methods: We describe the challenges encountered when EMERGE proposed the development of a global Emergency Department (ED) visit registry. The proposed registry was to be a 6-month, retrospective, deidentified, parsimonious dataset of routinely collected variables, such as patient demographics, diagnosis, and disposition. Results: Obtaining reliable, accurate, and pertinent data from participating EDs is challenging in a global context. Barriers experienced ranged from variable data taxonomies, need for language translation, varying processes for data cleaning and transfer of deidentified data, navigating numerous data protection regulations and substantial variation in each participating institution’s research infrastructure including training in research related activities. We have overcome many of these challenges through creating detailed data sharing agreements with bilateral regulatory oversight, developing relationships with and training site health informaticians to ensure secure transfer of deidentified data, and formalizing a transfer process ensuring data privacy. Conclusions: We believe that networks like EMERGE are integral to provide the necessary platforms for education, training and research collaborations. We identified substantial challenges in data sharing and variation in local sites’ research infrastructure, and propose approaches which may overcome the data quality and access issues that we encountered.

The multinational Arabidopsis research community is highly collaborative and over the past thirty years these activities have been documented by the Multinational Arabidopsis Steering Committee (MASC). Here, we (a) highlight recent research advances made with the reference plant Arabidopsis thaliana; (b) provide summaries from recent reports submitted by MASC subcommittees, projects and resources associated with MASC and from MASC country representatives; and (c) initiate a call for ideas and foci for the "fourth decadal roadmap," which will advise and coordinate the global activities of the Arabidopsis research community.

ObjectivesThis study sought to determine clinician and scientist involvement in heart failure (HF) clinical research and to describe the challenges of conducting clinical trials in the United States.BackgroundImprovements in the current capability, potential, and deficiencies of the HF clinical research infrastructure in the United States are needed in order to enhance efficiency and impact.MethodsThe Heart Failure Society of America (HFSA) distributed an electronic survey regarding HF clinical trial activity for the purpose of understanding the barriers that exist to conducting high-quality HF clinical research.ResultsOverall, 1,794 HFSA members were queried, and 434 members (24%) completed surveys, whereas a total of 7,589 individuals with interest in HF were queried, and 615 completed surveys. Of the respondents, 410 (67%) were actively engaged in HF research and 120 (20%) were interested in research. Most respondents, 270, were physicians (44%); 311 of the total (76% of the total and 80% of physicians) practiced in academic institutions; 333 respondents (81%) had served as principal investigators and 73 (18%) as site coordinators. Respondents active in clinical research usually participated in 1 to 5 trials and enrolled 1 to 20 patients annually. Institutional review board (IRB) approval typically required 3 months, and contract completion required 3 to 6 months per site. The greatest barriers to research were insufficient site budgets, delay in contracting, inability to find participants meeting trial entry criteria, and unavailability of qualified study coordinators.ConclusionsMany U.S. clinical research sites are constrained by budgetary, staffing, and contractual issues. The HFSA Research Network seeks to unify interested sites and deconstruct barriers to permit high-value HF research.

The Cancer Research Network (CRN) is a consortium of 12 research groups, each affiliated with a nonprofit integrated health care delivery system, that was first funded in 1998. The overall goal of the CRN is to support and facilitate collaborative cancer research within its component delivery systems. This paper describes the CRN's 20-year experience and evolution. The network combined its members' scientific capabilities and data resources to create an infrastructure that has ultimately supported over 275 projects. Insights about the strengths and limitations of electronic health data for research, approaches to optimizing multidisciplinary collaboration, and the role of a health services research infrastructure to complement traditional clinical trials and large observational datasets are described, along with recommendations for other research consortia.

Purpose: While the intellectual and scientific rationale for research collaboration has been articulated, a paucity of information is available on a strategic approach to facilitate the collaboration within a research network designed to reduce health disparities. This study aimed to (1) develop a conceptual model to facilitate collaboration among biostatisticians in a research network; (2) describe collaborative engagement performed by the Network's Data Coordinating Center (DCC); and (3) discuss potential challenges and opportunities in engaging the collaboration. Methods: Key components of the strategic approach will be developed through a systematic literature review. The Network's initiatives for the biostatistical collaboration will be described in the areas of infrastructure, expertise and knowledge management and experiential lessons will be discussed. Results: Components of the strategic approach model included three Ps (people, processes and programs) which were integrated into expert management, infrastructure management and knowledge management, respectively. Ongoing initiatives for collaboration with non-DCC biostatisticians included both web-based and face-to-face interaction approaches: Network's biostatistical capacities and needs assessment, webinar statistical seminars, mobile statistical workshop and clinics, adjunct appointment program, one-on-one consulting, and on-site workshop. The outreach program, as a face-to-face interaction approach, especially resulted in a useful tool for expertise management and needs assessment as well as knowledge exchange. Conclusions: Although fostering a partnered research culture, sustaining senior management commitment and ongoing monitoring are a challenge for this collaborative engagement, the proposed strategies centrally performed by the DCC may be useful in accelerating the pace and enhancing the quality of the scientific outcomes within a multidisciplinary clinical and translational research network.

ObjectiveWe describe the rationale, development, and progress on the Community and Patient Partnered Research Network (CPPRN). The CPPRN builds on more than a decade of partnered work and is designed to promote health equity by developing partnered research on behavioral health and social risk factors in Los Angeles and New Orleans.SettingA community-academic partnership across Los Angeles County and New Orleans.MethodsReview of rationale, history, structure, activities and progress in applying community partnered participatory research (CPPR) to CPPRN.FindingsPatient and community stakeholders participated in all phases of development, including local and national activities. Key developments include partnered planning efforts, progress on aggregating a large, de-identified dataset across county agencies, and development of an information technology-supported screening approach for behavioral and social determinants in health care, social, and community-based settings.ConclusionThe CPPRN represents a promising approach for research data networks, balancing the potential benefit of information technology and data analytic approaches while addressing potential risks and priorities of relevant stakeholders.

As providers of frontline clinical care for patients with acute and potentially life-threatening infections, emergency departments (EDs) have the priorities of saving lives and providing care quickly and efficiently. Although these facilities see a diversity of patients 24 hours per day and can collect prospective data in real time, their ability to conduct timely research on infectious syndromes is not well recognized. EMERGEncy ID NET is a national network that demonstrates that EDs can also collect data and conduct research in real time. This network collaborates with the Centers for Disease Control and Prevention (CDC) and other partners to study and address a wide range of infectious diseases and clinical syndromes. In this paper, we review selected highlights of EMERGEncy ID NET's history from 1995 to 2017. We focus on the establishment of this multisite research network and the network's collaborative research on a wide range of ED clinical topics.

ObjectiveAdoption of clinical decision support (CDS) tools by clinicians is often limited by workflow barriers. We sought to assess characteristics associated with clinician use of an electronic health record-embedded clinical decision support system (CDSS).MethodsIn a prospective study on emergency department (ED) activation of a CDSS tool across 14 hospitals between 9/1/14 to 4/30/15, the CDSS was deployed at 10 active sites with an on-site champion, education sessions, iterative feedback, and up to 3 gift cards/clinician as an incentive. The tool was also deployed at 4 passive sites that received only an introductory educational session. Activation of the CDSS - which calculated the Pulmonary Embolism Severity Index (PESI) score and provided guidance - and associated clinical data were collected prospectively. We used multivariable logistic regression with random effects at provider/facility levels to assess the association between activation of the CDSS tool and characteristics at: 1) patient level (PESI score), 2) provider level (demographics and clinical load at time of activation opportunity), and 3) facility level (active vs. passive site, facility ED volume, and ED acuity at time of activation opportunity).ResultsOut of 662 eligible patient encounters, the CDSS was activated in 55%: active sites: 68% (346/512); passive sites 13% (20/150). In bivariate analysis, active sites had an increase in activation rates based on the number of prior gift cards the physician had received (96% if 3 prior cards versus 60% if 0, p

Although various attempts have been made to build collaborative cultures for data sharing, their effectiveness is still questionable. The Jackson Heart Study (JHS) Vanguard Center (JHSVC) at the NIH-funded Research Centers in Minority Institutions (RCMI) Translational Research Network (RTRN) Data Coordinating Center (DCC) may be a new concept in that the data are being shared with a research network where a plethora of scientists/researchers are working together to achieve their common goal. This study describes the current practices to share the JHS data through the mechanism of JHSVC. The JHS is the largest single-site cohort study to prospectively investigate the determinants of cardiovascular disease among African-Americans. It has adopted a formal screened access method through a formalized JHSVC mechanism, in which only a qualified scientist(s) can access the data. The role of the DCC was to help RTRN researchers explore hypothesis-driven ideas to enhance the output and impact of JHS data through customized services, such as feasibility tests, data querying, manuscript proposal development and data analyses for publication. DCC has implemented these various programs to facilitate data utility. A total of 300 investigators attended workshops and/or received training booklets. DCC provided two online and five onsite workshops and developed/distributed more than 250 copies of the booklet to help potential data users understand the structure of and access to the data. Information on data use was also provided through the RTRN website. The DCC efforts led to the production of five active manuscript proposals, seven completed publications, 11 presentations and four NIH grant proposals. These outcomes resulted from activities during the first four years; over the last couple of years, there were few new requests. Our study suggested that DCC-customized services enhanced the accessibility of JHS data and their utility by RTRN researchers and helped to achieve the principal goal of JHSVC of scientific productivity. In order to achieve long-term success, the following, but not limited to these, should be addressed in the current data sharing practices: preparation of new promotional strategies in response to changes in technology and users' needs, collaboration with the Network statisticians, harmonization of the JHS data with the other local-based heart datasets to meet the needs of the potential users from the broader geographical areas, adoption of the RTRN comprehensive data-sharing policy to broaden the variety of research topics and implementation of an ongoing monitoring program to evaluate its success.