JMIR Publications

ABSTRACT

Background:

As consent for data sharing evolves with the digital age, plain text consent is not the only format in which information can be presented. However, how to design a good consent form is highly challenging. The addition of graphics, video, and other mediums to use can vary widely in effectiveness, and improper use can be detrimental to users.

Objective:

This study explores the expectations and experiences of adults towards consent given in an infographic, video, text, newsletter, and comic form in a health data-sharing scenario to better understand the appropriateness of different mediums and identify elements of each medium that most affect engagement with the content.

Methods:

We designed mock consent forms in an infographic, video, text, newsletter, and comic version. Semi-structured interviews were conducted with adults who were interviewed about their expectations for consent then shown each consent medium and asked about 1) engaging elements across mediums and 2) preferences for consent mediums and value of document quality criteria. We transcribed and qualitatively co-coded to identify themes and perform analyses.

Results:

24 users were interviewed, and we identified different thematic archetypes based on participant goals such as Trust Seekers who considered their own understanding and trust in organizations when making decisions. The infographic was ranked first for enhancing understanding, information prioritization, and maintaining the proper audience fit for serious consent in health data sharing scenarios. In addition, specific elements such as structure, step-by-step organization, and readability were preferred engaging elements.

Conclusions:

We identified archetypes to better understand user needs and elements that can be targeted to enhance user engagement with consent forms that can help inform the design of more effective consent for the future. Overall, preferences for mediums are highly contextual and more research should be done.