London School of Hygiene and Tropical Medicine, Keppel Street, WC1E 7HT, London, England.
Bull World Health Organ. 2010 Jun;88(6):462-6. doi: 10.2471/BLT.09.074393.
Epidemiologists and public health researchers are moving very slowly in the data sharing revolution, and agencies that maintain global health databases are reluctant to share data too. Once investments in infrastructure have been made, recycling and combining data provide access to maximum knowledge for minimal additional cost. By refusing to share data, researchers are slowing progress towards reducing illness and death and are denying a public good to taxpayers who support most of the research. Funders of public health research are beginning to call for change and developing data sharing policies. However they are not yet adequately addressing the obstacles that underpin the failure to share data. These include professional structures that reward publication of analysis but not of data, and funding streams and career paths that continue to undervalue critical data management work. Practical issues need to be sorted out too: how and where should data be stored for the long term, who will control access, and who will pay for those services? Existing metadata standards need to be extended to cope with health data. These obstacles have been known for some time; most can be overcome in the field of public health just as they have been overcome in other fields. However no institution has taken the lead in defining a work plan and carving up the tasks and the bill. In this round table paper, we suggest goals for data sharing and a work plan for reaching them, and challenge respondents to move beyond well intentioned but largely aspirational data sharing plans.
流行病学家和公共卫生研究人员在数据共享革命中进展缓慢,维护全球卫生数据库的机构也不愿意共享数据。一旦基础设施投资完成,回收和组合数据就可以以最小的额外成本获得最大的知识。通过拒绝共享数据,研究人员减缓了减少疾病和死亡的进展,剥夺了支持大部分研究的纳税人的公共利益。公共卫生研究的资助者开始呼吁变革并制定数据共享政策。然而,他们还没有充分解决阻碍数据共享的障碍。这些障碍包括奖励分析而不奖励数据的专业结构,以及继续低估关键数据管理工作的资金流和职业道路。还需要解决实际问题:数据应如何以及在何处长期存储,谁将控制访问权限,以及谁将为这些服务付费?现有的元数据标准需要扩展以适应健康数据。这些障碍已经存在了一段时间;在公共卫生领域,正如在其他领域一样,这些障碍是可以克服的。然而,没有任何机构率先制定工作计划,划分任务和账单。在本次圆桌会议论文中,我们提出了数据共享的目标和实现这些目标的工作计划,并呼吁与会者不要仅仅停留在有良好意愿但基本上是空想的数据共享计划上。