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Design jam on a modernized consent model to unlock health innovation

Organization

Memorial University, Faculty of Medicine

Published

2020

Project Leader(s)

Holly Etchegary (Principal Investigator) and Brenda Wilson, Faculty of Medicine, Memorial University, St. John’s, NL

Angela Power and Daryl Pullman, Newfoundland and Labrador Centre for Health Information, St. John’s, NL

Summary

The project team hosted a day-long Design Jam on modernizing consent for the use of personal health information. A design jam is a group brainstorming session, identifying solutions to a given problem in a creative, collaborative way. This Jam explored where consent can be embedded in the health system (and beyond) to maximize patients’ control over the use of their health data.

A novel part of the Jam was the composition of consent working tables. Each consent table included a mix of stakeholders including patients, clinicians, privacy regulators, provincial government decision makers, commercial innovators and researchers. This unique set up ensured a wide mix of perspectives was applied to the consent focus of each table. Over 50 participants actively engaged in brainstorming and developing solutions over the day.

The organizers provided an illustration of potential consent solutions across six different consent gateways. These include opportunities at hospital kiosks, provincial health card renewal sites, patient portals, health research portals, at the point of clinical care, and through mobile apps. The organizers offered specific consent considerations for each of these gateways, but common features were evident across them all. These included the need for multiple consent opportunities, consent models that give patients ultimate control over the use of their personal health data, and models that give patients a chance to revisit (and revise) their consent preferences over time. Dynamic and transparent consent models can help ensure these features are met.

Project deliverables are available in the following language(s):

English

OPC Funded Project

This project received funding support through the Office of the Privacy Commissioner of Canada’s Contributions Program. The opinions expressed in the summary and report(s) are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Summaries have been provided by the project authors. Please note that the projects appear in their language of origin.

Contact Information

Holly Etchegary, PhD
Assistant Professor
Patient/Public engagement Faculty lead, CIHR-SPOR NL SUPPORT Unit
Faculty of Medicine, Memorial University
Craig L. Dobbin Centre for Genetics
Rm 4M210, St. John's, NL, A1B 3V6

709-864-6605
holly.etchegary@med.mun.ca

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