title: Increasing value and reducing waste: addressing inaccessible research.
abstract: The methods and results of health research are documented in study protocols, full study reports (detailing all analyses), journal reports, and participant-level datasets. However, protocols, full study reports, and participant-level datasets are rarely available, and journal reports are available for only half of all studies and are plagued by selective reporting of methods and results. Furthermore, information provided in study protocols and reports varies in quality and is often incomplete. When full information about studies is inaccessible, billions of dollars in investment are wasted, bias is introduced, and research and care of patients are detrimentally affected. To help to improve this situation at a systemic level, three main actions are warranted. First, academic institutions and funders should reward investigators who fully disseminate their research protocols, reports, and participant-level datasets. Second, standards for the content of protocols and full study reports and for data sharing practices should be rigorously developed and adopted for all types of health research. Finally, journals, funders, sponsors, research ethics committees, regulators, and legislators should endorse and enforce policies supporting study registration and wide availability of journal reports, full study reports, and participant-level datasets.
authors.affiliation: Women's College Research Institute, Department of Medicine, Women's College Hospital, University of Toronto, Toronto, ON, Canada. Electronic address: anwen.chan@utoronto.ca.
authors.forename: An-Wen
authors.initials: AW
authors.lastname: Chan
authors.affiliation: Norwich Medical School, Faculty of Medicine and Health Science, University of East Anglia, Norwich, UK.
authors.forename: Fujian
authors.initials: F
authors.lastname: Song
authors.affiliation: Department of Epidemiology and Biostatistics, Memorial Sloan-Kettering Cancer Center, New York, NY, USA.
authors.forename: Andrew
authors.initials: A
authors.lastname: Vickers
authors.affiliation: The Cochrane Collaboration, Rome, Italy.
authors.forename: Tom
authors.initials: T
authors.lastname: Jefferson
authors.affiliation: Center for Clinical Trials, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Kay
authors.initials: K
authors.lastname: Dickersin
authors.affiliation: Nordic Cochrane Centre, Rigshospitalet, Copenhagen, Denmark.
authors.forename: Peter C
authors.initials: PC
authors.lastname: Gøtzsche
authors.affiliation: Section of Cardiovascular Medicine and the Robert Wood Johnson Foundation Clinical Scholars Program, Department of Medicine, Yale School of Medicine, Yale University, New Haven, CT, USA; Department of Health Policy and Management, Yale School of Public Health, Yale University, New Haven, CT, USA; Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, CT, USA.
authors.forename: Harlan M
authors.initials: HM
authors.lastname: Krumholz
authors.affiliation: Research Translation Branch, National Health and Medical Research Council, Canberra, ACT, Australia.
authors.forename: Davina
authors.initials: D
authors.lastname: Ghersi
authors.affiliation: Department of Neurology and Neurosurgery, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht, Netherlands.
authors.forename: H Bart
authors.initials: HB
authors.lastname: van der Worp
mesh_terms: D022126:Access to Information; D035843:Biomedical Research / Q000379:methods / Q000592:standards*; D002986:Clinical Trials as Topic / Q000592:standards; D006801:Humans; D033181:Information Dissemination; D010506:Periodicals as Topic / Q000592:standards; D017594:Publication Bias; D011643:Publishing / Q000592:standards; D012107:Research Design