Trust and Inclusion in Digital Health: The Need to Transform Consent

Trust and Inclusion in Digital Health: The Need to Transform Consent
Brief Communication
Celia Brightwell, Stefanie Brückner, Orit Halpern, Stephen Gilbert
Digital Society, October 2024
Open Access
Abstract
As health systems increasingly adopt digital solutions, such as remote monitoring and telemedicine, the use of health apps is becoming increasingly widespread. Meanwhile, data protection regulations and digital transformation initiatives are making the individual responsible for protecting their health data. In this brief communication, we focus on how the consent interface in a health app can impact trust and inclusion in digital health for privacy-sensitive people. As the consent interface determines how an individual’s health data can be used in medical research, it represents a critical point between the citizen’s right to informational self-determination and the potential public benefit of advances in medical science. We find that app developers’ interests in controlling access to health data may influence the design of the consent interface and undermine an individual’s ability to understand what they are consenting to. We describe how a standardized consent interface applied to health apps could foster a trusting relationship between individuals and the digital transformation of healthcare.