Mahidol Oxford Tropical Medicine Research Unit (MORU), Faculty of Tropical Medicine, Mahidol University, 420/6 Rajvithi Road, Bangkok, 10040, Thailand.
Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Old Road Campus, Roosevelt Drive, Oxford, OX3 7FZ, UK.
BMC Med. 2019 Apr 17;17(1):80. doi: 10.1186/s12916-019-1315-8.
Health-related research funders, regulators and journals expect that de-identified individual-level health data be shared widely, with as few restrictions as possible; yet, in reality, the volume of shared data remains low.
Health researchers and other data producers are reluctant to share their data unless they are confident that their datasets are of high quality and reliable, and that they are used in accordance with the values and aims of their institutions. We argue that having an institutional, departmental or group data management and sharing policy is the first step towards encouraging researchers and healthcare professionals to share their data more widely. Our paper outlines the elements of a data management and sharing policy, which should include aims consistent with those of the institution as well as with data management procedures, models of data sharing, request procedures, consent models and cost recovery mechanisms. A policy would help an institution, department or group maximise the use of its data and protect the interests of the institution and its members. We base our recommendations on our experience collecting and curating data for large clinical trials conducted in low- and middle-income countries, facilitating the sharing of datasets with secondary users, whilst teaching data management and conducting empirical research on data sharing. Although the fundamentals of a policy are general, the paper is focused on the low- and middle-income country context.
We argue that having an institutional, departmental or group data management and sharing policy is the first step in promoting data sharing.
健康相关的研究资助者、监管者和期刊期望尽可能少地限制去识别的个体健康数据的广泛共享；然而，实际上，共享数据的数量仍然很低。
除非健康研究人员和其他数据生产者确信他们的数据集具有高质量和可靠性，并且其使用符合机构的价值观和目标，否则他们不愿意共享其数据。我们认为，制定机构、部门或团体数据管理和共享政策是鼓励研究人员和医疗保健专业人员更广泛地共享数据的第一步。我们的论文概述了数据管理和共享政策的要素，该政策应包括与机构以及数据管理程序、数据共享模型、请求程序、同意模型和成本回收机制一致的目标。政策将有助于机构、部门或团体最大限度地利用其数据，并保护机构及其成员的利益。我们的建议基于我们在为中低收入国家开展的大型临床试验中收集和管理数据的经验，以及促进与二级用户共享数据集，同时教授数据管理和开展关于数据共享的实证研究。虽然政策的基本原则是通用的，但本文侧重于中低收入国家的背景。
我们认为，制定机构、部门或团体数据管理和共享政策是促进数据共享的第一步。
