Advancing a consent-forward paradigm for digital mental health data

Abstract

The field of digital mental health is advancing at a rapid pace. Passively collected data from user engagements with digital tools and services continue to contribute insights into mental health and illness. As the field of digital mental health grows, a concerning norm has been established—digital service users are given little say over how their data are collected, shared or used to generate revenue for private companies. Given a long history of service-user exclusion from data collection practices, we propose an alternative approach that is attentive to this history: the consent-forward paradigm. This paradigm embeds principles of affirmative consent in the design of digital mental health tools and services, which may strengthen trust around individual choices and needs, and proactively protect users from unexpected harm. In this Perspective, we outline practical steps to implement this paradigm, toward ensuring that people searching for care have the safest experiences possible. In this Perspective, the authors discuss a consent-forward paradigm that embeds principles of affirmative consent in the design of digital mental health tools and services and protects users from unexpected harm.