Rubin Katrine Hass, Christensen Emilie Rosenfeldt, Brødbaek Janni, Petersen Tanja Gram, Nielsen Anna Skat
OPEN - Open Patient data Explorative Network, Odense University Hospital, J. B. Winsløws Vej 21, Odense C, 5000, Denmark.
Research Unit OPEN, Department of Clinical Research, University of Southern Denmark, J. B. Winsløws Vej 21, Odense C, 5000, Denmark.
BMC Health Serv Res. 2025 May 27;25(1):753. doi: 10.1186/s12913-025-12915-2.
Health research projects can be complex challenges for those who undertake them and include substantial work that is not, in itself, a part of the scientific discipline. This work relates to the ever-evolving requirements of legislation, administration, and secure IT facilities, and the tasks can prove to be a significant barrier for researchers with inadequate access to research infrastructure and resources. Additionally, inappropriately applied study designs or statistical methods may result in studies which add little value to their field, but these issues may be avoidable if the necessary infrastructure and support is available. The aim of this paper is to describe the structure of a research support unit in the Region of Southern Denmark and how the unit has grown over time, followed by a discussion addressing challenges which may arise when building such research infrastructure.
This paper presents a descriptive case on the structure of the research support unit OPEN (Open Patient data Explorative Network). It outlines the establishment, growth, and challenges through semi-structured interviews with founders and users of OPEN, user experience surveys, internal and official documents, and internal database reports on projects that have used or are going to use OPEN's facilities.
OPEN was established in 2008 to support researchers in collecting and storing data and biological material from research projects, and has since evolved and grown, providing support and infrastructure in nearly all aspects of the research process, and continuously adapting to meet the changing needs of the researchers. From 2008 to 2022, a total of 1814 health research projects have received support from OPEN, with 255 of these being admitted as new projects in 2022. User satisfaction surveys and interviews showed high levels of satisfaction in support and services, but also highlighted areas of infrastructure which can be developed further.
OPEN has experienced significant growth since it was founded, evolving into a one-stop shop for research support. A flexible framework and agile adaptation to user needs have been important factors in this expansion. The challenges and successes of this process may inspire others working with health administration and research infrastructure.
对于从事健康研究项目的人来说，这些项目可能是复杂的挑战，其中包括大量本身并非科学学科一部分的工作。这项工作涉及不断变化的立法、行政和安全信息技术设施要求，对于无法充分利用研究基础设施和资源的研究人员而言，这些任务可能成为重大障碍。此外，研究设计或统计方法应用不当可能导致研究对其所在领域贡献甚微，但如果有必要的基础设施和支持，这些问题或许可以避免。本文旨在描述丹麦南部地区一个研究支持单位的架构以及该单位随时间的发展情况，随后讨论构建此类研究基础设施时可能出现的挑战。
本文介绍了关于研究支持单位OPEN（开放患者数据探索网络）架构的描述性案例。通过对OPEN的创建者和用户进行半结构化访谈、用户体验调查、内部和官方文件以及关于已使用或将要使用OPEN设施的项目的内部数据库报告，概述了其成立、发展和面临的挑战。
OPEN成立于2008年，旨在支持研究人员从研究项目中收集和存储数据及生物材料，此后不断发展壮大，在研究过程的几乎所有方面提供支持和基础设施，并持续适应研究人员不断变化的需求。从2008年到2022年，共有1814个健康研究项目获得了OPEN的支持，其中255个项目在2022年被接纳为新项目。用户满意度调查和访谈显示，对支持和服务的满意度很高，但也突出了可进一步发展的基础设施领域。
自成立以来，OPEN经历了显著增长，发展成为一个提供一站式研究支持的机构。灵活的框架和对用户需求的敏捷适应一直是这一扩张过程中的重要因素。这一过程中的挑战和成功可能会激励其他从事健康管理和研究基础设施工作的人。
