Health Informatics Seminar Series: Imagine Compassionate Consent for Digital Mental Health Services

Series Overview

The joint Health Informatics seminar series is a collaboration between the Faculty of Information (iSchool) and the Institute of Health Policy, Management and Evaluation. It aims to build bridges between people from these units, who share an interest in and passion for information and communication technology (ICT) for health—reflecting the interdisciplinary nature of Health Informatics, which is at the intersection of information, technology, social sciences, and health. Speakers will discuss their cutting-edge research on a variety of topics.

Session Description

Digital health and AI-enabled services are becoming increasingly pervasive in our society, requiring the increased collection, use, and disclosure of people’s data. People are often uninformed about data practices of these services as the marketplace uses a “privacy notice and choice” consent paradigm. Privacy notices (or notices) often they fall short of the theoretical ideal of informing given its length, complex language, and poor designs, when they are available. This study employs a Value-Sensitive Design (VSD) lens in exploring how we might design meaningful consent by “front-loading” ethics and socio-technical considerations. This approach takes conceptual, empirical, and technical investigations to identify the values and value tensions. We conducted interviews with 19 Hope by CAMH suicide safety planning apps to explore their experiences and views on consent. Honesty, Helpfulness, Universal Usability, and Privacy were the human values identified and defined in the conceptual and empirical investigations. Based on these values, the technical investigation identified Honesty and Helpfulness as the core tension, where overly simple or complex designs can be received with skepticism. This tension interacts with Universal Usability, highlighting the equity considerations in design. Based on these exploratory findings, this study provides recommendations to adjust existing guidelines to make meaningful consent also compassionate. 

Speaker Bios

Nelson Shen

Nelson Shen, MHA PhD, is staff scientist at the Centre for Addictions and Mental Health (CAMH), Toronto, Canada. He is also an Assistant Professor and a Faculty Co-lead for the Health Informatics Research emphasis for the Health Services Research (HSR) Program at the Institute of Health Policy, Management and Evaluation (University of Toronto (UofT). He is also currently serving as the UofT HSR hub lead for the International Collaborative for Translational Digital Health—a trilateral collaboration with The University of Melbourne and University of Manchester.

Broadly, Nelson’s research is at the intersection of design thinking and digital mental health. A focal point of Nelson’s research is engage people with lived experience to identify ways to foster public trust and digital citizenship in innovative uses of health data. He will be presenting his AMS Healthcare Research Fellowship in Compassion and Artificial Intelligence (AI) research project described below.