Governance of Digital Health Data on Cooperatively Organized Platforms – a Design Thinking Approach

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dc.contributor.authorBurmann, Anja
dc.contributor.authorLanger, Henrike
dc.contributor.authorBosompem, Jennifer
dc.contributor.authorClemens, Timo
dc.contributor.authorHerten, Benjamin
dc.contributor.authorKerstan, Leah
dc.contributor.authorLauer, Romy
dc.contributor.authorNaeve, Peter
dc.contributor.authorGeller, Simon
dc.contributor.authorHuhnt, Jönne
dc.contributor.authorMerkel, Sebastian
dc.date.accessioned2022-12-27T19:21:25Z
dc.date.available2022-12-27T19:21:25Z
dc.date.issued2023-01-03
dc.description.abstractMore and more stakeholders are collecting data for improving their services: from scientific research over public administration to commercial enterprises. Existing data management services offer few rights of co-determination for their users. Data cooperatives aim to provide a democratic alternative to this. Through such a platform cooperative members are supposed to be enabled to share their data in a self-determined way. In this paper, we present a design thinking-based user research with stakeholders of data cooperatives in a health-data context. We provide an overview of motivations, expectations, and interfaces between a cooperative and individuals as cooperative members, organizations, representatives from research, and policy makers. In an iterative process, 34 interviews were conducted with different stakeholder groups, from which 7 personas were subsequently derived. For these, 4 prototypes were developed and tested with potential users. Our results show that all interviewed groups were very interested in the concept of data cooperatives. At the same time, it proves challenging to reconcile the conflicting internal and external requirements and to implement attractive value propositions for all stakeholders.
dc.format.extent10
dc.identifier.doi10.24251/HICSS.2023.757
dc.identifier.isbn978-0-9981331-6-4
dc.identifier.urihttps://hdl.handle.net/10125/103391
dc.language.isoeng
dc.relation.ispartofProceedings of the 56th Hawaii International Conference on System Sciences
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 International
dc.rights.urihttps://creativecommons.org/licenses/by-nc-nd/4.0/
dc.subjectSocio-Technical Issues in Organizational Information Technologies
dc.subjectdata cooperative
dc.subjectdata governance
dc.subjectdata platform
dc.subjecthealth data
dc.subjectsmart cities
dc.titleGovernance of Digital Health Data on Cooperatively Organized Platforms – a Design Thinking Approach
dc.type.dcmitext
prism.startingpage6250

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