Application description and policy model in collaborative environment for sharing of information on epidemiological and clinical research data sets.
BACKGROUND
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 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.


METHODS
The 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.


RESULTS
The 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.


CONCLUSIONS
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, thus potentially facilitating collaboration efforts among research communities distributed around the globe.
de Carvalho
Elias César Araujo
EC
Research on Research Group, Duke University Health System, Durham, North Carolina, United States of America.
Batilana
Adelia Portero
AP
Simkins
Julie
J
Martins
Henrique
H
Shah
Jatin
J
Rajgor
Dimple
D
Shah
Anand
A
Rockart
Scott
S
Pietrobon
Ricardo
R
D022126:Access to Information; D001315:Australia; D035843:Biomedical Research / Q000706:statistics & numerical data*; D002681:China; D003194:Computer-Assisted Instruction / Q000379:methods / Q000592:standards; D003299:Cooperative Behavior; D034742:Electronic Mail; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D016247:Information Storage and Retrieval / Q000379:methods* / Q000592:standards; D007391:International Cooperation; D020407:Internet; D008962:Models, Theoretical; D011640:Public Policy; D015203:Reproducibility of Results; D012846:Singapore; D012984:Software; D014481:United States