Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework
Background: 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...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2021-05-01
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| Series: | Frontiers in Public Health |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpubh.2021.668386/full |
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| author | Andrea Martani Lester Darryl Geneviève Sophia Mira Egli Frédéric Erard Tenzin Wangmo Bernice Simone Elger Bernice Simone Elger |
| author_facet | Andrea Martani Lester Darryl Geneviève Sophia Mira Egli Frédéric Erard Tenzin Wangmo Bernice Simone Elger Bernice Simone Elger |
| author_sort | Andrea Martani |
| collection | DOAJ |
| description | Background: 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.Methods: 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.Results: 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.Conclusion: 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. |
| first_indexed | 2024-12-19T02:13:22Z |
| format | Article |
| id | doaj.art-4c5874b50439440da25d7b90160437d9 |
| institution | Directory Open Access Journal |
| issn | 2296-2565 |
| language | English |
| last_indexed | 2024-12-19T02:13:22Z |
| publishDate | 2021-05-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Public Health |
| spelling | doaj.art-4c5874b50439440da25d7b90160437d92022-12-21T20:40:34ZengFrontiers Media S.A.Frontiers in Public Health2296-25652021-05-01910.3389/fpubh.2021.668386668386Evolution or Revolution? Recommendations to Improve the Swiss Health Data FrameworkAndrea Martani0Lester Darryl Geneviève1Sophia Mira Egli2Frédéric Erard3Tenzin Wangmo4Bernice Simone Elger5Bernice Simone Elger6Institute for Biomedical Ethics, University of Basel, Basel, SwitzerlandInstitute for Biomedical Ethics, University of Basel, Basel, SwitzerlandMaster Student, Faculty of Medicine, University of Basel, Basel, SwitzerlandSIB Swiss Institute of Bioinformatics, Lausanne, SwitzerlandInstitute for Biomedical Ethics, University of Basel, Basel, SwitzerlandInstitute for Biomedical Ethics, University of Basel, Basel, SwitzerlandUniversity Center of Legal Medicine, University of Geneva, Geneva, SwitzerlandBackground: 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.Methods: 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.Results: 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.Conclusion: 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.https://www.frontiersin.org/articles/10.3389/fpubh.2021.668386/fullhealth datahealth policye-healthSwitzerlandbiomedical researchhealth informatics |
| spellingShingle | Andrea Martani Lester Darryl Geneviève Sophia Mira Egli Frédéric Erard Tenzin Wangmo Bernice Simone Elger Bernice Simone Elger Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework Frontiers in Public Health health data health policy e-health Switzerland biomedical research health informatics |
| title | Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework |
| title_full | Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework |
| title_fullStr | Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework |
| title_full_unstemmed | Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework |
| title_short | Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework |
| title_sort | evolution or revolution recommendations to improve the swiss health data framework |
| topic | health data health policy e-health Switzerland biomedical research health informatics |
| url | https://www.frontiersin.org/articles/10.3389/fpubh.2021.668386/full |
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