JMIR Publications

ABSTRACT

Background:

Patient autonomy through informed consent is a foundational ethical principle for healthcare practitioners. "Consenting" online often produces "consent in name only", using manipulative or confusing user interfaces to artificially extract consent. This presents a significant danger for safe and ethical remote consultations for primary care providers, which often extract significant amounts of sensitive personal data.

Objective:

This study aims to examine the quality of consent obtained through both currently-used and novel consent acquisition mechanisms for remote electronic consultations.

Methods:

52 UK adult participants interacted with a prototype electronic consultation system’s consent interface for data processing, and were then asked questions about what they had consented to, and the usability of the interface. These then led to the calculation of an industry-standard System Usability Scale (SUS) score, and a novel score for the Quality of Informed Consent Collected Digitally (QuICCDig).

Results:

Existing and novel user interfaces for collecting e-consultation consent were rated poorly, achieving a maximum SUS letter grade of “F”. Users perceiving interfaces to be more usable was statistically significantly correlated to an increase in the quality of consent collected from those users. 45.5% of participants reported not recalling making a privacy-related decision at all during their consultation, and 87.3% did not recall being offered any alternatives to e-consultation.

Conclusions:

Findings demonstrate current methods for collecting consent in telemedical applications may not be fit for purpose, and potentially fail to collect valid informed consent. Decision makers should therefore place importance on high-quality interface design when building or procuring these systems. We also provide the QuICCDig score for further use. Clinical Trial: N/A; not a clinical trial.