skip to main content
US FlagAn official website of the United States government
dot gov icon
Official websites use .gov
A .gov website belongs to an official government organization in the United States.
https lock icon
Secure .gov websites use HTTPS
A lock ( lock ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites.

Attention:

The NSF Public Access Repository (PAR) system and access will be unavailable from 10:00 PM to 12:00 PM ET on Tuesday, March 25 due to maintenance. We apologize for the inconvenience.


Title: The Pacific Innovations, Knowledge, and Opportunities (PIKO) Program: A Data Lifecycle Research Experience
Pacific evidence-based clinical and translational research is greatly needed. However, there are research challenges that stem from the creation, accessibility, availability, usability, and compliance of data in the Pacific. As a result, there is a growing demand for a complementary approach to the traditional Western research process in clinical and translational research. The data lifecycle is one such approach with a history of use in various other disciplines. It was designed as a data management tool with a set of activities that guide researchers and organizations on the creation, management, usage, and distribution of data. This manuscript describes the data lifecycle and its use by the Biostatistics, Epidemiology, and Research Design core data science team in support of the Center for Pacific Innovations, Knowledge, and Opportunities program.  more » « less
Award ID(s):
2217242
PAR ID:
10511894
Author(s) / Creator(s):
;
Publisher / Repository:
Hawaii Journal of Health & Social Welfare
Date Published:
Journal Name:
Hawaii journal of health social welfare
ISSN:
2641-5224
Subject(s) / Keyword(s):
data lifecycle health evidence-based clinical translational Native Hawaiian health Pacific Islander health Filipino health data science PIKO
Format(s):
Medium: X
Sponsoring Org:
National Science Foundation
More Like this
  1. null (Ed.)
    Abstract Introduction: In clinical and translational research, data science is often and fortuitously integrated with data collection. This contrasts to the typical position of data scientists in other settings, where they are isolated from data collectors. Because of this, effective use of data science techniques to resolve translational questions requires innovation in the organization and management of these data. Methods: We propose an operational framework that respects this important difference in how research teams are organized. To maximize the accuracy and speed of the clinical and translational data science enterprise under this framework, we define a set of eight best practices for data management. Results: In our own work at the University of Rochester, we have strived to utilize these practices in a customized version of the open source LabKey platform for integrated data management and collaboration. We have applied this platform to cohorts that longitudinally track multidomain data from over 3000 subjects. Conclusions: We argue that this has made analytical datasets more readily available and lowered the bar to interdisciplinary collaboration, enabling a team-based data science that is unique to the clinical and translational setting. 
    more » « less
  2. The PanNET Working Group of the 16th International Multiple Endocrine Neoplasia Workshop (MEN2019) convened in Houston, TX, USA, 27–29 March 2019 to discuss key unmet clinical needs related to PanNET in the context of MEN1, with a special focus on non-functioning (nf)-PanNETs. The participants represented a broad range of medical scientists as well as representatives from patient organizations, pharmaceutical industry and research societies. In a case-based approach, participants addressed early detection, surveillance, prognostic factors and management of localized and advanced disease. For each topic, after a review of current evidence, key unmet clinical needs and future research directives to make meaningful progress for MEN1 patients with nf-PanNETs were identified. International multi-institutional collaboration is needed for adequately sized studies and validation of findings in independent datasets. Collaboration between basic, translational and clinical scientists is paramount to establishing a translational science approach. In addition, bringing clinicians, scientists and patients together improves the prioritization of research goals, assures a patient-centered approach and maximizes patient involvement. It was concluded that collaboration, research infrastructure, methodologic and reporting rigor are essential to any translational science effort. The highest priority for nf-PanNETs in MEN1 syndrome are (1) the development of a data and biospecimen collection architecture that is uniform across all MEN1 centers, (2) unified strategies for diagnosis and follow-up of incident and prevalent nf-PanNETs, (3) non-invasive detection of individual nf-PanNETs that have an increased risk of metastasis, (4) chemoprevention clinical trials driven by basic research studies and (5) therapeutic targets for advanced disease based on biologically plausible mechanisms. 
    more » « less
  3. Abstract As the need to tackle complex clinical and societal problems rises, researchers are increasingly taking on a translational approach. This approach, which seeks to integrate theories, methodologies, and frameworks from various disciplines across a team of researchers, places emphasis on translation of findings in order to offer practical solutions to real-world problems. While translational research leads to a number of positive outcomes, there are also a multitude of barriers to conducting effective team science, such as effective coordination and communication across the organizational, disciplinary, and even geographic boundaries of science teams. Given these barriers to success, there is a significant need to establish team interventions that increase science team effectiveness as translational research becomes the new face of science. This review is intended to provide translational scientists with an understanding of barriers to effective team science and equip them with the necessary tools to overcome such barriers. We provide an overview of translational science teams, discuss barriers to science team effectiveness, demonstrate the lacking state of current interventions, and present recommendations for improving interventions in science teams by applying best practices from the teams and groups literature across the four phases of transdisciplinary research. 
    more » « less
  4. null (Ed.)
    Effective natural resource management and policy is contingent on information generated by research. Conversely, the applicability of research depends on whether it is responsive to the needs and constraints of resource managers and policy makers. However, many scientific fields including invasion ecology suffer from a disconnect between research and practice. Despite strong socio-political imperatives, evidenced by extensive funding dedicated to addressing invasive species, the pairing of invasion ecology with stakeholder needs to support effective management and policy is lacking. As a potential solution, we propose translational invasion ecology (TIE). As an extension of translational ecology, as a framework to increase collaboration among scientists, practitioners, and policy makers to reduce negative impacts of invasive species. As an extension of translational ecology, TIE is an approach that embodies an intentional and inclusive process in which researchers, stakeholders, and decision makers collaborate to develop and implement ecological research via joint consideration of the ecological, sociological, economic, and/or political contexts in order to improve invasive species management. TIE ideally results in improved outcomes as well as shared benefits between researchers and managers. We delineate the steps of our proposed TIE approach and describe successful examples of ongoing TIE projects from the US and internationally. We suggest practical ways to begin incorporating TIE into research and management practices, including supporting boundary-spanning organizations and activities, expanding networks, sharing translational experiences, and measuring outcomes. We find that there is a need for strengthened boundary spanning, as well as funding and recognition for advancing translational approaches. As climate change and globalization exacerbate invasive species impacts, TIE provides a promising approach to generate actionable ecological research while improving outcomes of invasive species management and policy decisions. 
    more » « less
  5. This paper examines the effect of translational research on knowledge production and biomedical entrepreneurship across U.S. regions. Researchers have earlier investigated the outputs of translational research by focusing on academic publications. Little attention has been paid to linking translational research to biomedical entrepreneurship. We construct an analytical model based on the knowledge spillover theory of entrepreneurship and the entrepreneurial ecosystem approach to examine the relationship between translational research, biomedical patents, clinical trials, and biomedical entrepreneurship. We test the model across 381 U.S. metropolitan statistical areas using 10 years of panel data related to the NIH Clinical and Translational Science Awards (CTSA) program. CTSA appears to increase the number of biomedical patents and biomedical entrepreneurship as proxied by the NIH Small Business Innovation Research (SBIR) grants. However, the magnitudes of the effects are relatively small. Path analysis shows that the effect of translational research on regional biomedical entrepreneurship is not strongly conveyed through biomedical patents or clinical trials. 
    more » « less