Stakeholder’s Perceptions of Value and Risks in Data Governance for the Secondary Use of Health Data

Hannu Nieminen, Rima Sermontyte-Baniule, Nina Helander

Research output: Chapter in Book/Report/Conference proceedingConference contributionScientificpeer-review

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Abstract

The study is a literature study assessing the value expectations and risks perceived by the different stakeholders related to the governance of secondary use of health data. A key value expectation for all stakeholders was found to be that data provides public benefits and “common good”, especially through academic research. Especially for the researchers improvement of health equity in the society was also an important value expectation. For patients and also for decisionmakers security and privacy related risks were often mentioned. For all stakeholders the risk of stigma for different groups in the society and for the patient herself was seen to be important. Constant and clear communication towards all stakeholders about what data is collected, how it is used, what the expected benefits are and how the risks are managed needs to be a key element of health data governance solutions. All stakeholders see the importance of involving also the patient representatives to the governance of health data. Data governance should be developed towards a continuous and transparent collaborative process, where all stakeholders voice is heard, and they can affect the decisions.

Original languageEnglish
Title of host publication14th International Conference on Knowledge Management and Information Systems, KMIS 2022 as part of IC3K 2022 - Proceedings of the 14th International Joint Conference on Knowledge Discovery, Knowledge Engineering and Knowledge Management
EditorsJorge Bernardino, Elio Masciari, Colette Rolland, Joaquim Filipe
PublisherScience and Technology Publications (SciTePress)
Pages119-125
Number of pages7
ISBN (Electronic)978-989-758-614-9
DOIs
Publication statusPublished - 2022
Publication typeA4 Article in conference proceedings
EventInternational Conference on Knowledge Management and Information Systems as part of International Joint Conference on Knowledge Discovery, Knowledge Engineering and Knowledge Management - Valletta, Malta
Duration: 24 Oct 202226 Oct 2022

Publication series

NameInternational Joint Conference on Knowledge Discovery, Knowledge Engineering and Knowledge Management, IC3K - Proceedings
Volume3
ISSN (Electronic)2184-3228

Conference

ConferenceInternational Conference on Knowledge Management and Information Systems as part of International Joint Conference on Knowledge Discovery, Knowledge Engineering and Knowledge Management
Country/TerritoryMalta
CityValletta
Period24/10/2226/10/22

Keywords

  • Health Data Governance
  • Review
  • Secondary Health Data
  • Stakeholder Perceptions
  • Value Creation

Publication forum classification

  • Publication forum level 0

ASJC Scopus subject areas

  • Software
  • Management of Technology and Innovation
  • Strategy and Management

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