Application Description and Policy Model in Collaborative Environment for Sharing of Information on Epidemiological and Clinical Research Data Sets

Elias César Araujo De Carvalho,Ricardo Pietrobon,Adelia Portero Batilana,Henrique Martins,Julie Simkins,Dimple Rajgor,Scott Rockart,Anand Shah,Jatin Shah,Simon I Hay

doi:10.1371/journal.pone.0009314

Elias César Araujo De Carvalho, Ricardo Pietrobon + Show 8 more

Open Access

https://doi.org/10.1371/journal.pone.0009314

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Abstract

BackgroundSharing of epidemiological and clinical data sets among researchers is poor at best, in detriment of science and community at large. The purpose of this paper is therefore to (1) describe a novel Web application designed to share information on study data sets focusing on epidemiological clinical research in a collaborative environment and (2) create a policy model placing this collaborative environment into the current scientific social context.MethodologyThe Database of Databases application was developed based on feedback from epidemiologists and clinical researchers requiring a Web-based platform that would allow for sharing of information about epidemiological and clinical study data sets in a collaborative environment. This platform should ensure that researchers can modify the information. A Model-based predictions of number of publications and funding resulting from combinations of different policy implementation strategies (for metadata and data sharing) were generated using System Dynamics modeling.Principal FindingsThe application allows researchers to easily upload information about clinical study data sets, which is searchable and modifiable by other users in a wiki environment. All modifications are filtered by the database principal investigator in order to maintain quality control. The application has been extensively tested and currently contains 130 clinical study data sets from the United States, Australia, China and Singapore. Model results indicated that any policy implementation would be better than the current strategy, that metadata sharing is better than data-sharing, and that combined policies achieve the best results in terms of publications.ConclusionsBased on our empirical observations and resulting model, the social network environment surrounding the application can assist epidemiologists and clinical researchers contribute and search for metadata in a collaborative environment, thus potentially facilitating collaboration efforts among research communities distributed around the globe.

Highlights

Millions of dollars are spent on the creation and management of biomedical and epidemiological research data sets every year [1], the information extracted from these data sets to improve healthcare and prevention is poor at best, with pathetic perhaps being a better descriptive word
Based on our empirical observations and resulting model, the social network environment surrounding the application can assist epidemiologists and clinical researchers contribute and search for metadata in a collaborative environment, potentially facilitating collaboration efforts among research communities distributed around the globe
Software requirements were defined based on requirements stipulated by epidemiologists and clinical researchers working with our development group as well as review of the literature

Summary

Introduction

Millions of dollars are spent on the creation and management of biomedical and epidemiological research data sets every year [1], the information extracted from these data sets to improve healthcare and prevention is poor at best, with pathetic perhaps being a better descriptive word. One of the reasons for this lack of sharing is that researchers consider their data proprietary [2], providing them with a competitive advantage over other groups in terms of discovery and further acquisition of funds that would expand their research operations. This unintended consequence of the current organization behind biomedical research leads to duplication of research efforts, precluding an expedited path toward the discovery of answers to important research questions. Sharing of epidemiological and clinical data sets among researchers is poor at best, in detriment of science and community at large. The purpose of this paper is to (1) describe a novel Web application designed to share information on study data sets focusing on epidemiological clinical research in a collaborative environment and (2) create a policy model placing this collaborative environment into the current scientific social context

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