Structure and growth of a Danish research infrastructure and support unit for health research - OPEN (Open Patient data Explorative Network)

丹麦健康研究基础设施和支持机构 OPEN(开放患者数据探索网络)的结构和发展

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Abstract

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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