Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
Master Student, Faculty of Medicine, University of Basel, Basel, Switzerland.
Front Public Health. 2021 May 31;9:668386. doi: 10.3389/fpubh.2021.668386. eCollection 2021.
Facilitating access to health data for public health and research purposes is an important element in the health policy agenda of many countries. Improvements in this sense can only be achieved with the development of an appropriate data infrastructure and the implementations of policies that also respect societal preferences. Switzerland is a revealing example of a country that has been struggling to achieve this aim. The objective of the study is to reflect on stakeholders' recommendations on how to improve the health data framework of this country. We analysed the recommendations collected as part of a qualitative study including 48 expert stakeholders from Switzerland that have been working principally with health databases. Recommendations were divided in themes and subthemes according to applied thematic analysis. Stakeholders recommended several potential improvements of the health data framework in Switzerland. At the general level of mind-set and attitude, they suggested to foster the development of an explicit health data strategy, better communication and the respect of societal preferences. In terms of infrastructure, there were calls for the creation of a national data center, the improvement of IT solutions and the use of a Unique Identifier for patient data. Lastly, they recommended harmonising procedures for data access and to clarify data protection and consent rules. Recommendations show several potential improvements of the health data framework, but they have to be reconciled with existing policies, infrastructures and ethico-legal limitations. Achieving a gradual implementation of the recommended solutions is the preferable way forward for Switzerland and a lesson for other countries that are also seeking to improve health data access for public health and research purposes.
促进公共卫生和研究目的的健康数据获取是许多国家卫生政策议程的重要组成部分。在这方面的改进只能通过开发适当的数据基础设施和实施尊重社会偏好的政策来实现。瑞士是一个在实现这一目标方面一直努力奋斗的国家的典型例子。本研究的目的是反思利益相关者关于如何改善该国健康数据框架的建议。我们分析了作为一项包括来自瑞士的 48 位主要从事健康数据库工作的专家利益相关者的定性研究的一部分收集的建议。建议根据应用主题分析分为主题和子主题。利益相关者建议对瑞士的健康数据框架进行几项潜在的改进。在思维方式和态度的总体层面上,他们建议促进明确的健康数据战略的发展、更好的沟通和对社会偏好的尊重。在基础设施方面,有人呼吁建立一个国家数据中心、改进 IT 解决方案以及为患者数据使用唯一标识符。最后,他们建议协调数据访问程序,并澄清数据保护和同意规则。建议显示了健康数据框架的几个潜在改进,但它们必须与现有的政策、基础设施和伦理法律限制相协调。瑞士更倾向于逐步实施建议的解决方案,这为其他也在寻求改善公共卫生和研究目的健康数据获取的国家提供了一个借鉴。