A Personal Health App and Wearable Co-Design Framework for Rare and Complex Diseases: User-Centered, Collaborative...

End user co-design in the personal digital health technology space is underdeveloped. Clinical uptake of personal digital health technologies has been poor, highlighting a need to cocreate solutions with end users.

The study aimed to describe an "end user" co-design framework in the development of 5 prototype personal health apps for patients with different rare or complex diseases.

A patient-led, user-centered, collaborative personal health app plus wearable plug-in co-design methodology was developed. Five prototype apps were developed for end users with long COVID-19, pancreatitis, primary ciliary dyskinesia, sarcoidosis, and valosin-containing protein disease by a multidisciplinary partnership including patients, app design and development experts, user experience experts, clinicians, and patient-driven organizations. Phase 1 involved a 6-month co-design process with 5 modules involving patient-driven organizations that included the codevelopment of specifications through group workshops and independent exercises that defined the goals, content, features, and user experience of each app. Phase 2 involved app build-out, internal alpha testing, and beta study preparations. Phase 3 involved a usability beta testing study in which end users used the app and associated wearable/smart devices (Oura ring, Lumia ear device, Empatica EmbracePlus, and MIR Spirobank Spirometer) for up to 5 months. Participant feedback was documented continuously and systematically, centering on the following themes: functionality, usability, harms, benefits, self-explorations, and beta testing study details related to retention and adherence.

While unique app goals were codeveloped by each disease group, a central goal across groups was to develop a personal health app enabling users to track subjective, self-reported symptoms, objective measures of health, and unique modifiers of symptoms. A total of 239 end user participants participated in the beta testing pilot study. Enrollment and retention rates were high, ranging from 94% to 100% and 92.2% to 100%, respectively. All active participants gave some form of feedback: there were 257 unique participant suggestions of how to specifically modify or improve the study app experience. Participant feedback themes commonly centered around customization to reduce daily burden and improve personal tailoring of the app. Participants' desires surrounding symptom displays were heterogeneous.

Personal health app co-design is rooted in a complex digital landscape that requires a significant amount of up-front effort and time. However, the up-front investment of time can result in rich and diverse end user feedback that could save time in the app development trajectory to implementation. This paper provides a co-design framework and the building blocks of 5 prototype personal health apps with publicly available open-source code on GitHub. These prototypes could be leveraged for improving understanding of, communicating symptoms of, and providing n-of-1 suggestions for rare or complex diseases, providing benefit to patient communities and individual patients.