Ovretveit John, Nelson Eugene, James Brent
LIME/MMC, Karolinska Institutet, Stockholm, Sweden.
The Dartmouth Institute, Dartmouth University , Dartmouth, New Hampshire, USA.
J Health Organ Manag. 2016 Oct 10;30(7):1105-1118. doi: 10.1108/JHOM-06-2016-0110.
Purpose The purpose of this paper is to describe how clinical registers were designed and used to serve multiple purposes in three health systems, in order to contribute practical experience for building learning healthcare systems. Design/methodology/approach Case description and comparison of the development and use of clinical registries, drawing on participants' experience and published and unpublished research. Findings Clinical registers and new software systems enable fact-based decisions by patients, clinicians, and managers about better care, as well as new and more economical research. Designing systems to present the data for users' daily work appears to be the key to effective use of the potential afforded by digital data. Research limitations/implications The case descriptions draw on the experience of the authors who were involved in the development of the registers, as well as on published and unpublished research. There is limited data about outcomes for patients or cost-effectiveness. Practical implications The cases show the significant investments which are needed to make effective use of clinical register data. There are limited skills to design and apply the digital systems to make the best use of the systems and to reduce their disadvantages. More use can be made of digital data for quality improvement, patient empowerment and support, and for research. Social implications Patients can use their data combined with other data to self-manage their chronic conditions. There are challenges in designing and using systems so that those with lower health and computer literacy and incomes also benefit from these systems, otherwise the digital revolution may increase health inequalities. Originality/value The paper shows three real examples of clinical registers which have been developed as part of their host health systems' strategies to develop learning healthcare systems. The paper gives a simple non-technical introduction and overview for clinicians, managers, policy-advisors and improvers of what is possible and the challenges, and highlights the need to shape the design and implementation of digital infrastructures in healthcare services to serve users.
目的 本文旨在描述临床登记系统如何在三个卫生系统中进行设计和使用以服务于多种目的，从而为构建学习型卫生系统提供实践经验。
设计/方法/途径 基于参与者的经验以及已发表和未发表的研究，对临床登记系统的开发和使用进行案例描述与比较。
发现 临床登记系统和新的软件系统使患者、临床医生和管理人员能够基于事实做出关于更好治疗的决策，以及开展新的、更经济的研究。设计系统以便为用户的日常工作呈现数据似乎是有效利用数字数据潜力的关键。
研究局限/影响 案例描述借鉴了参与登记系统开发的作者的经验以及已发表和未发表的研究。关于患者结局或成本效益的数据有限。
实际意义 案例表明有效利用临床登记数据需要大量投资。设计和应用数字系统以充分利用这些系统并减少其劣势的技能有限。可以更多地利用数字数据来改善质量、增强患者权能与提供支持以及开展研究。
社会影响 患者可以将自己的数据与其他数据结合起来自我管理慢性病。在设计和使用系统时存在挑战，即要让健康素养和计算机素养较低以及收入较低的人群也能从这些系统中受益，否则数字革命可能会加剧健康不平等。
原创性/价值 本文展示了作为其所在卫生系统发展学习型卫生系统战略一部分而开发的临床登记系统的三个真实案例。本文为临床医生、管理人员、政策顾问和改进人员提供了一个简单的非技术性介绍和概述，说明可能实现的目标和面临的挑战，并强调需要塑造医疗服务中数字基础设施的设计和实施以服务用户。
