Patient Perspectives on Sharing Deidentified Trial Data
Authors: Christopher W. Jones, Brian W. Roberts, Timothy F. Platts-Mills
Journal: Annals of Internal Medicine (2016)

Letters15 November 2016Patient Perspectives on Sharing Deidentified Trial DataChristopher W. Jones, MD, Brian W. Roberts, MD, and Timothy F. Platts-Mills, MD, MScChristopher W. Jones, MDFrom Cooper Medical School of Rowan University, Camden, New Jersey, and University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.Search for more papers by this author, Brian W. Roberts, MDFrom Cooper Medical School of Rowan University, Camden, New Jersey, and University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.Search for more papers by this author, and Timothy F. Platts-Mills, MD, MScFrom Cooper Medical School of Rowan University, Camden, New Jersey, and University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.Search for more papers by this authorAuthor, Article, and Disclosure Informationhttps://doi.org/10.7326/L16-0089 SectionsAboutFull TextPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareFacebookTwitterLinkedInRedditEmail Background: The International Committee of Medical Journal Editors has proposed sharing deidentified individual-patient data from clinical trials with other researchers as a condition of publication in member journals (1). This proposal might facilitate independent verification of trial results, improve reliability of meta-analyses (2), and enable generation of new hypotheses based on subgroup and secondary outcome analyses. However, releasing individual-patient data also increases the risk for patient identification by third parties, particularly for patients with rare conditions or for data sets that include genetic information (3, 4). Little is known about patient attitudes or how this new policy might affect study ...References1. Taichman DB, Backus J, Baethge C, Bauchner H, de Leeuw PW, Drazen JM, et al. Sharing clinical trial data: a proposal from the International Committee of Medical Journal Editors [Editorial]. Ann Intern Med. 2016;164:505-6. [PMID: 26792258]. doi:10.7326/M15-2928 LinkGoogle Scholar2. Tierney JF, Pignon JP, Gueffyier F, Clarke M, Askie L, Vale CL, et al; Cochrane IPD Meta-analysis Methods Group. How individual participant data meta-analyses have influenced trial design, conduct, and analysis. J Clin Epidemiol. 2015;68:1325-35. [PMID: 26186982] doi:10.1016/j.jclinepi.2015.05.024 CrossrefMedlineGoogle Scholar3. Sydes MR, Johnson AL, Meredith SK, Rauchenberger M, South A, Parmar MK. Sharing data from clinical trials: the rationale for a controlled access approach. Trials. 2015;16:104. [PMID: 25872927] doi:10.1186/s13063-015-0604-6 CrossrefMedlineGoogle Scholar4. McGuire AL, Gibbs RA. Genetics No longer de-identified. Science. 2006;312:370-1. [PMID: 16627725] CrossrefMedlineGoogle Scholar Author, Article, and Disclosure InformationAffiliations: From Cooper Medical School of Rowan University, Camden, New Jersey, and University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.Disclosures: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=L16-0089. PreviousarticleNextarticle Advertisement FiguresReferencesRelatedDetails Metrics Cited byPatient Perceptions of Audio and Video Recording in the Operating RoomStatus, use and impact of sharing individual participant data from clinical trials: a scoping reviewSharing of Clinical Trial Data and Samples: The Cancer Patient PerspectivePatient consent to publication and data sharing in industry and NIH-funded clinical trialsData Sharing Statements for Clinical Trials: One Step Down the RoadDarren B. Taichman, MD, PhD and Christine Laine, MD, MPHAccess to Anonymized Individual Participant Clinical Trials Data: A Radical Change of Mind by the Most Prestigious Medical JournalsAcceso a los datos individuales anonimizados de los participantes en los ensayos clínicos: el cambio radical de opinión de las revistas médicas de mayor prestigio 15 November 2016Volume 165, Issue 10Page: 748-749KeywordsBehaviorClinical trial reportingClinical trialsDisclosureEmergency departmentGeneticsHispanic peopleInterquartile rangeResearch design ePublished: 15 November 2016 Issue Published: 15 November 2016 Copyright & PermissionsCopyright © 2016 by American College of Physicians. All Rights Reserved.PDF downloadLoading ...