Exploring User Behaviours when Providing Electronic Consent on Health Social Networks: A ‘Just Tick Agree’ Approach

摘要

In an online world, the distinction between public and private is becoming increasingly blurred with rising concerns about the privacy and security of personal health information. The aim of this study is to explore electronic consent (eConsent) on a Health Social Network (HSN) – PatientsLikeMe - to improve both the form and accessibility of contractual information presented to HSN users. Participants registered on this HSN and their interaction/behaviours was observed when agreeing to the site’s Terms and Conditions (T&C’s) and Privacy Policy (PP) documents. Focus group discussions were used to help us understand how and why certain events occurred. Several themes emerged from this data - ‘Just Tick Agree’ phenomenon, perceived societal benefits for the public good, data privacy concerns and emotional drivers towards eConsent. By achieving a deeper understanding of the eConsent process to an HSN, contributions are presented for both theory and practice. We argue that the complex language used for T&C’s and PP statements when simplified would increase user knowledge, awareness and understanding. Furthermore, HSN user behaviours (i.e. ‘Just Tick Agree’) must change when registering on HSNs and, developers of HSNs should enable user choice on registration by changing how users’ control their personal health-related data.