Edinburgh Research Explorer

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

Activity: Participating in or organising an event typesParticipation in workshop, seminar, course

Abstract

Presentation and 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.

As advertised:

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

Dr. Claudia Pagliari will be presenting on the value of citizens’ engagement in digital health with a particular emphasis for public engagement to understand the acceptability of health data sharing for research and practice. The presentation will be tailored to the Singapore audience, drawing on international experiences and local developments.


The workshop focused on:
- Importance of public engagement to understand acceptable boundaries of health 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.

Attending event

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

Duration2 Oct 20192 Oct 2019
Location of eventNational University of Singapore
CitySingapore
CountrySingapore
Web address (URL)
Degree of recognitionLocal event

Event: Workshop

ID: 115490118