title: User-Friendly Data-Sharing Practices for Fostering Collaboration within a Research Network: Roles of a Vanguard Center for a Community-Based Study.
abstract: 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.
authors.affiliation: Research Centers in Minority Institutions Translational Research Network Data Coordinating Center, Mississippi e-Center, Jackson State University, 1230 Raymond Rd., Jackson, MS 39204, USA. jae.e.lee@jsums.edu.|Department of Epidemiology and Biostatistics, School of Public Health, Jackson State University, 350 W. Woodrow Wilson Drive Jackson Medical Mall, Jackson, MS 39213, USA. jae.e.lee@jsums.edu.
authors.forename: Jae Eun
authors.initials: JE
authors.lastname: Lee
authors.affiliation: Department of Epidemiology and Biostatistics, School of Public Health, Jackson State University, 350 W. Woodrow Wilson Drive Jackson Medical Mall, Jackson, MS 39213, USA. jung.h.lee@jsums.edu.
authors.forename: Jung Hye
authors.initials: JH
authors.lastname: Sung
authors.affiliation: Research Centers in Minority Institutions Translational Research Network Data Coordinating Center, Mississippi e-Center, Jackson State University, 1230 Raymond Rd., Jackson, MS 39204, USA. m.e.barnett@rtrn.net.
authors.forename: M Edwina
authors.initials: ME
authors.lastname: Barnett
authors.affiliation: Department of Medicine, David Geffen School of Medicine, UCLA, 911 Broxton Ave, Los Angeles, CA 90024, USA. knorris@ucla.edu.
authors.forename: Keith
authors.initials: K
authors.lastname: Norris
mesh_terms: D000328:Adult; D001741:Black or African American; D000368:Aged; D000369:Aged, 80 and over; D002318:Cardiovascular Diseases / Q000208:ethnology* / Q000209:etiology; D003299:Cooperative Behavior; D005260:Female; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D008913:Minority Groups; D011446:Prospective Studies; D012107:Research Design; D014481:United States / Q000453:epidemiology
keywords: data-sharing practice; research network; role of coordinating center