National University of Singapore

Pagliari, C. (Speaker)

Activity: Visiting an external institution typesResearch and Teaching at External Organisation

Description

Workshop held at the National University of Singapore, under the auspices of the Centre for Biomedical Ethics. The audience/participants included bioethics researchers, clinicians and government representatives.


Is there a role for citizens’ participation in digital health data depository and access?

Dr. Claudia Pagliari discussed the value of citizens’ engagement in digital health, particular to inform data sharing policies for research and practice. The presentation was tailored to the Singapore audience, drawing on international experiences and local developments.


The workshop focused on:
- Importance of engagement for understanding acceptable boundaries of data sharing
- Implications of data mining, linkage and profiling for patents and citizens' privacy and autonomy
- Context of health data in a surveillance society and future linkages
- Patient access to personal data as a tool for enhancing transparency and trust
- Pros/cons of different elective consent mechanisms and governance options
- International practices. Local context.
Period2 Oct 2019
VisitingNational University of Singapore
Degree of RecognitionLocal

Keywords

  • Digital Health
  • Data Science
  • Data Ethics
  • Citizen Participation
  • Data rights
  • data sharing
  • Consent
  • Public engagement
  • eHealth
  • Patient engagement