JMIR Publications

ABSTRACT

Background:

End-user co-design in the personal digital health technology space (P-DHT) is underdeveloped.

Objective:

The objective of this paper is to describe an ‘end-user’ co-design framework in the development of five prototype personal health apps for patients with different rare and complex diseases.

Methods:

A patient-led, user-centered, and collaborative personal health app plus wearable plug-in co-design methodology was developed. Five prototype apps were developed for end-users with Long COVID, pancreatitis, primary ciliary dyskinesia (PCD), sarcoidosis, and Valosin-containing protein (VCP) disease by a multidisciplinary partnership including patients, app design and development experts, UX experts, clinicians, and patient driven organizations (PDGs). Phase 1 involved a 6-month co-design phase with 5 modules with the PDGs that included the co-development of specifications through group workshops and independent exercises that defined the goals, content, features, and UX of each app. Phase 2 involved the app build out, internal alpha testing, and beta study preparations. Phase 3 involved a usability beta testing study with end-user participants who used the app, and various 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.

Results:

While unique app goals were co-developed by each disease group, a central goal across groups was to develop a personal health app that enables the user to track and follow subjective, self-reported symptoms, objective measures of health, and unique modifiers of symptoms. A total of 239 participant end-users participated in the beta testing pilot study. Enrolment 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.

Conclusions:

Personal health app co-design is rooted in a complex digital landscape that requires a significant amount of upfront effort and time. However, the upfront 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 five prototype personal health apps with publically 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 and complex diseases, providing benefit to patient communities and individual patients.