| 1. |
- Aarestrup, FM, et al.
(författare)
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Towards a European health research and innovation cloud (HRIC)
- 2020
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Ingår i: Genome medicine. - : Springer Science and Business Media LLC. - 1756-994X. ; 12:1, s. 18-
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Tidskriftsartikel (refereegranskat)abstract
- The European Union (EU) initiative on the Digital Transformation of Health and Care (Digicare) aims to provide the conditions necessary for building a secure, flexible, and decentralized digital health infrastructure. Creating a European Health Research and Innovation Cloud (HRIC) within this environment should enable data sharing and analysis for health research across the EU, in compliance with data protection legislation while preserving the full trust of the participants. Such a HRIC should learn from and build on existing data infrastructures, integrate best practices, and focus on the concrete needs of the community in terms of technologies, governance, management, regulation, and ethics requirements. Here, we describe the vision and expected benefits of digital data sharing in health research activities and present a roadmap that fosters the opportunities while answering the challenges of implementing a HRIC. For this, we put forward five specific recommendations and action points to ensure that a European HRIC: i) is built on established standards and guidelines, providing cloud technologies through an open and decentralized infrastructure; ii) is developed and certified to the highest standards of interoperability and data security that can be trusted by all stakeholders; iii) is supported by a robust ethical and legal framework that is compliant with the EU General Data Protection Regulation (GDPR); iv) establishes a proper environment for the training of new generations of data and medical scientists; and v) stimulates research and innovation in transnational collaborations through public and private initiatives and partnerships funded by the EU through Horizon 2020 and Horizon Europe.
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| 3. |
- Sattler, Claudia, et al.
(författare)
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Participatory research in times of COVID-19 and beyond: Adjusting your methodological toolkits
- 2022
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Ingår i: One Earth. - : Elsevier BV. - 2590-3330 .- 2590-3322. ; 5:1, s. 62-73
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Tidskriftsartikel (refereegranskat)abstract
- Solving grand environmental societal challenges calls for transdisciplinary and participatory methods in social- ecological research. These methods enable co-designing the research, co-producing the results, and co-creating the impacts together with concerned stakeholders. COVID-19 has had serious impacts on thechoice of research methods, but reflections on recent experiences of ‘‘moving online’’ are still rare. In this perspective, we focus on the challenge of adjusting different participatory methods to online formats used in five transdisciplinary social-ecological research projects. The key added value of our research is the lessons learned from a comparison of the pros and cons of adjusting a broader set ofmethods to online formats. We conclude that combining the adjusted online approaches with well-established face-to-face formats intomore inclusive hybrid approaches can enrich and diversify the pool of available methods for postpandemic research. Furthermore, a more diverse group of participants can be engaged in the research process.
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