Patient Perspectives on Data Sharing

Louise C. Druedahl and Sofia Kälvemark Sporrong
Additional contact information
Louise C. Druedahl: University of Copenhagen
Sofia Kälvemark Sporrong: Uppsala University

A chapter in The Law and Ethics of Data Sharing in Health Sciences, 2024, pp 51-67 from Springer

Abstract: Abstract Data sharing is key for artificial intelligenceArtificial intelligence (AI) and for future healthcare systems, but the perspectives of patients are seldom included in the larger debates of how, when, and what data to share. This chapter provides an overview of research on patient perspectivesPatient perspective on data sharing and associated aspects, including patients’ motivations, concerns, and views on privacy and conditions for sharing. Moreover, these perspectives are put into the evolving context of informed consentConsent and today’s European context of the General Data Protection Regulation (GDPR)General Data Protection Regulation (GDPR) and Data Governance Act (DGA)Data Governance Act (DGA). Overall, there seems to be a discrepancy between the patients’ perspective on data sharing and the reality in which their data are to be shared. The current patient views are researched within relatively ‘local’ contexts, where the patient would consentConsent to collecting data for primary use and on patients’ preferences regarding consent and what they see as barriers and motivators for data sharing. However, the reality of data use is moving towards re-use of data for secondary purposes and a context of more altruistic consentConsent such as the DGA. Questions remain regarding how patients perceive sharing and the role of their data in the larger governance of data; seemingly, patient views are lost in the wider debate of innovationInnovation and jurisdictional competitiveness. Ensuring that patients’ voices are heard is essential for public acceptance of data sharing, and thus for inclusiveness and equity of results and innovations originating from patients’ shared data.

Keywords: Artificial intelligence; Consent; Data sharing; Data governance Act; GDPR; Patient perspective (search for similar items in EconPapers)
Date: 2024
References: Add references at CitEc
Citations:

There are no downloads for this item, see the EconPapers FAQ for hints about obtaining it.

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:spr:perchp:978-981-99-6540-3_4

Ordering information: This item can be ordered from
http://www.springer.com/9789819965403

DOI: 10.1007/978-981-99-6540-3_4

Access Statistics for this chapter

More chapters in Perspectives in Law, Business and Innovation from Springer
Bibliographic data for series maintained by Sonal Shukla () and Springer Nature Abstracting and Indexing ().