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dc.contributor.authorWeitzman, Elissa R.
dc.contributor.authorAdida, Ben
dc.contributor.authorKelemen, Skyler
dc.contributor.authorMandl, Kenneth D.
dc.date.accessioned2011-09-02T15:42:47Z
dc.date.available2011-09-02T15:42:47Z
dc.date.issued2011-04
dc.date.submitted2010-10
dc.identifier.issn1932-6203
dc.identifier.urihttp://hdl.handle.net/1721.1/65606
dc.description.abstractBackground: Surveillance and response to diabetes may be accelerated through engaging online diabetes social networks (SNs) in consented research. We tested the willingness of an online diabetes community to share data for public health research by providing members with a privacy-preserving social networking software application for rapid temporal-geographic surveillance of glycemic control. Methods and Findings: SN-mediated collection of cross-sectional, member-reported data from an international online diabetes SN entered into a software applicaction we made available in a “Facebook-like” environment to enable reporting, charting and optional sharing of recent hemoglobin A1c values through a geographic display. Self-enrollment by 17% (n = 1,136) of n = 6,500 active members representing 32 countries and 50 US states. Data were current with 83.1% of most recent A1c values reported obtained within the past 90 days. Sharing was high with 81.4% of users permitting data donation to the community display. 34.1% of users also displayed their A1cs on their SN profile page. Users selecting the most permissive sharing options had a lower average A1c (6.8%) than users not sharing with the community (7.1%, p = .038). 95% of users permitted re-contact. Unadjusted aggregate A1c reported by US users closely resembled aggregate 2007–2008 NHANES estimates (respectively, 6.9% and 6.9%, p = 0.85). Conclusions: Success within an early adopter community demonstrates that online SNs may comprise efficient platforms for bidirectional communication with and data acquisition from disease populations. Advancing this model for cohort and translational science and for use as a complementary surveillance approach will require understanding of inherent selection and publication (sharing) biases in the data and a technology model that supports autonomy, anonymity and privacy.en_US
dc.description.sponsorshipCenters for Disease Control and Prevention (U.S.) (P01HK000088-01)en_US
dc.description.sponsorshipCenters for Disease Control and Prevention (U.S.) (P01HK000016 )en_US
dc.description.sponsorshipNational Institute of Alcohol Abuse and Alcoholism (U.S.) (R21 AA016638-01A1)en_US
dc.description.sponsorshipNational Center for Research Resources (U.S.) (1U54RR025224-01)en_US
dc.description.sponsorshipChildren's Hospital (Boston, Mass.) (Program for Patient Safety and Quality)en_US
dc.language.isoen_US
dc.publisherPublic Library of Scienceen_US
dc.relation.isversionofhttp://dx.doi.org/10.1371/journal.pone.0019256en_US
dc.rightsCreative Commons Attributionen_US
dc.rights.urihttp://creativecommons.org/licenses/by/2.5/en_US
dc.sourcePLoSen_US
dc.titleSharing Data for Public Health Research by Members of an International Online Diabetes Social Networken_US
dc.typeArticleen_US
dc.identifier.citationWeitzman, Elissa R. et al. “Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network.” Ed. Beverley J. Shea. PLoS ONE 6.4 (2011) : e19256.en_US
dc.contributor.departmentHarvard University--MIT Division of Health Sciences and Technologyen_US
dc.contributor.approverMandl, Kenneth D.
dc.contributor.mitauthorMandl, Kenneth D.
dc.contributor.mitauthorWeitzman, Elissa R.
dc.contributor.mitauthorAdida, Ben
dc.contributor.mitauthorKelemen, Skyler
dc.relation.journalPLoS ONEen_US
dc.eprint.versionFinal published versionen_US
dc.type.urihttp://purl.org/eprint/type/JournalArticleen_US
eprint.statushttp://purl.org/eprint/status/PeerRevieweden_US
dspace.orderedauthorsWeitzman, Elissa R.; Adida, Ben; Kelemen, Skyler; Mandl, Kenneth D.en
mit.licensePUBLISHER_CCen_US


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