IDEAS home Printed from https://ideas.repec.org/h/spr/perchp/978-981-99-6540-3_4.html
   My bibliography  Save this book chapter

Patient Perspectives on Data Sharing

In: The Law and Ethics of Data Sharing in Health Sciences

Author

Listed:
  • Louise C. Druedahl

    (University of Copenhagen)

  • Sofia Kälvemark Sporrong

    (Uppsala University)

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.

Suggested Citation

  • Louise C. Druedahl & Sofia Kälvemark Sporrong, 2024. "Patient Perspectives on Data Sharing," Perspectives in Law, Business and Innovation, in: Marcelo Corrales Compagnucci & Timo Minssen & Mark Fenwick & Mateo Aboy & Kathleen Liddell (ed.), The Law and Ethics of Data Sharing in Health Sciences, pages 51-67, Springer.
    • Handle: RePEc:spr:perchp:978-981-99-6540-3_4
    DOI: 10.1007/978-981-99-6540-3_4
    as

    Download full text from publisher

    To our knowledge, this item is not available for download. To find whether it is available, there are three options:
    1. Check below whether another version of this item is available online.
    2. Check on the provider's web page whether it is in fact available.
    3. Perform a search for a similarly titled item that would be available.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:spr:perchp:978-981-99-6540-3_4. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    We have no bibliographic references for this item. You can help adding them by using this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: http://www.springer.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.