PARTAGE - Investigating patient-controlled data sharing for real-world evidence using the Opal patient portal

Student

Brandon Woolfson

Directeur.e(s) de recherche

John Kildea

Start date

2021-04-30

Title of the research project

PARTAGE - Investigating patient-controlled data sharing for real-world evidence using the Opal patient portal

Description

The PARTAGE project (Patients and Researchers Team-up and Generate Evidence) is a research project that is examining mechanisms to allow patients to securely share their clinical data with researchers using the Opal patient portal. As part of the overall PARTAGE project, this specific sub-project is about obtaining stakeholder feedback on the concept of data-sharing. To do so, we are using a process of stakeholder co-design in which patients, clinicians and researchers are embedded in the research team and we are obtaining additional feedback from each stakeholder group through focus groups and surveys.

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