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Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland

INTRODUCTION: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands...

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Autores principales: Martani, Andrea, Geneviève, Lester Darryl, Wangmo, Tenzin, Maurer, Julia, Crameri, Katrin, Erard, Frédéric, Spoendlin, Julia, Pauli-Magnus, Christiane, Pittet, Valerie, Sengstag, Thierry, Soldini, Emiliano, Hirschel, Bernard, Borisch, Bettina, Kruschel Weber, Cornelia, Zwahlen, Marcel, Elger, Bernice Simone
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10126638/
https://www.ncbi.nlm.nih.gov/pubmed/37113255
http://dx.doi.org/10.1177/20552076231169826
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author Martani, Andrea
Geneviève, Lester Darryl
Wangmo, Tenzin
Maurer, Julia
Crameri, Katrin
Erard, Frédéric
Spoendlin, Julia
Pauli-Magnus, Christiane
Pittet, Valerie
Sengstag, Thierry
Soldini, Emiliano
Hirschel, Bernard
Borisch, Bettina
Kruschel Weber, Cornelia
Zwahlen, Marcel
Elger, Bernice Simone
author_facet Martani, Andrea
Geneviève, Lester Darryl
Wangmo, Tenzin
Maurer, Julia
Crameri, Katrin
Erard, Frédéric
Spoendlin, Julia
Pauli-Magnus, Christiane
Pittet, Valerie
Sengstag, Thierry
Soldini, Emiliano
Hirschel, Bernard
Borisch, Bettina
Kruschel Weber, Cornelia
Zwahlen, Marcel
Elger, Bernice Simone
author_sort Martani, Andrea
collection PubMed
description INTRODUCTION: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward. We aimed to explore which specific elements of data governance can facilitate – from ethico-legal and socio-cultural perspectives – the sharing and reuse of data for research purposes in Switzerland. METHODS: A modified Delphi methodology was used to collect and structure input from a panel of experts via successive rounds of mediated interaction on the topic of health data governance in Switzerland. RESULTS: First, we suggested techniques to facilitate data sharing practices, especially when data are shared between researchers or from healthcare institutions to researchers. Second, we identified ways to improve the interaction between data protection law and the reuse of data for research, and the ways of implementing informed consent in this context. Third, we put forth ideas on policy changes, such as the steps necessary to improve coordination between different actors of the data landscape and to win the defensive and risk-adverse attitudes widespread when it comes to health data. CONCLUSIONS: After having engaged with these topics, we highlighted the importance of focusing on non-technical aspects to improve the data-readiness of a country (e.g., attitudes of stakeholders involved) and of having a pro-active debate between the different institutional actors, ethico-legal experts and society at large.
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spelling pubmed-101266382023-04-26 Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland Martani, Andrea Geneviève, Lester Darryl Wangmo, Tenzin Maurer, Julia Crameri, Katrin Erard, Frédéric Spoendlin, Julia Pauli-Magnus, Christiane Pittet, Valerie Sengstag, Thierry Soldini, Emiliano Hirschel, Bernard Borisch, Bettina Kruschel Weber, Cornelia Zwahlen, Marcel Elger, Bernice Simone Digit Health Original Research INTRODUCTION: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward. We aimed to explore which specific elements of data governance can facilitate – from ethico-legal and socio-cultural perspectives – the sharing and reuse of data for research purposes in Switzerland. METHODS: A modified Delphi methodology was used to collect and structure input from a panel of experts via successive rounds of mediated interaction on the topic of health data governance in Switzerland. RESULTS: First, we suggested techniques to facilitate data sharing practices, especially when data are shared between researchers or from healthcare institutions to researchers. Second, we identified ways to improve the interaction between data protection law and the reuse of data for research, and the ways of implementing informed consent in this context. Third, we put forth ideas on policy changes, such as the steps necessary to improve coordination between different actors of the data landscape and to win the defensive and risk-adverse attitudes widespread when it comes to health data. CONCLUSIONS: After having engaged with these topics, we highlighted the importance of focusing on non-technical aspects to improve the data-readiness of a country (e.g., attitudes of stakeholders involved) and of having a pro-active debate between the different institutional actors, ethico-legal experts and society at large. SAGE Publications 2023-04-20 /pmc/articles/PMC10126638/ /pubmed/37113255 http://dx.doi.org/10.1177/20552076231169826 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Research
Martani, Andrea
Geneviève, Lester Darryl
Wangmo, Tenzin
Maurer, Julia
Crameri, Katrin
Erard, Frédéric
Spoendlin, Julia
Pauli-Magnus, Christiane
Pittet, Valerie
Sengstag, Thierry
Soldini, Emiliano
Hirschel, Bernard
Borisch, Bettina
Kruschel Weber, Cornelia
Zwahlen, Marcel
Elger, Bernice Simone
Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland
title Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland
title_full Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland
title_fullStr Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland
title_full_unstemmed Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland
title_short Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland
title_sort sensing the (digital) pulse. future steps for improving the secondary use of data for research in switzerland
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10126638/
https://www.ncbi.nlm.nih.gov/pubmed/37113255
http://dx.doi.org/10.1177/20552076231169826
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