Abstract
BACKGROUND: Patients with inflammatory bowel disease (IBD) have periods with flare-ups, including abdominal pain, diarrhea, bloody stools, and systemic symptoms that may negatively influence the patients' quality of life. Hence, prompt and intensified treatment is often required, and patients need to pay attention to self-management, including easy access to health care professionals. Seeking support is essential in patients' self-management and beneficial for their quality of life. However, patients may experience difficulties in gaining access to health care professionals by phone or email when needed. Mobile health (mHealth) interventions have been shown to support patients with flexible, timely, and ongoing communication with health care professionals. However, the most prevalent functions of current apps for patients with IBD are tracking disease symptoms and accessing information. In addition, patient and clinician involvement in the design and development of eHealth apps for patients with IBD has been limited, although engaging patients is emphasized as essential for identifying tools and functionalities that they find relevant and effective. OBJECTIVE: This study aimed to develop an mHealth solution for patients with IBD using participatory design to support tailored communication between patients and health care professionals. METHODS: Through participatory design, we completed 3 focus groups, 4 mock-up workshops, and 2 prototype tests involving patients, health care professionals, and an IT designer to collaboratively develop a prototype. The iterative process allowed for feedback from all stakeholders to inform the design and development. This approach facilitated ongoing refinement of the prototype until a mutually satisfactory solution was achieved. Data analysis followed the structured phases inherent to participatory design: planning, acting, observing, and reflecting. RESULTS: A total of 14 patients with IBD aged 18-65 years and 9 health care professionals from 2 outpatient clinics in Denmark contributed to the mHealth design. The analysis generated 6 themes of patients' suggestions for app content: easy-access messaging, agreement overviews, self-initiated patient-reported outcomes with free text, treatment and blood test notifications, an IBD knowledge base, and self-monitoring via diary and symptom registration. An intervention that reflected users' needs and requests to support patients' access to and communication with health care professionals in outpatient clinics was developed. The intervention included messaging, symptom registration, notifications, questionnaires with free-text space, a knowledge base, and an appointment overview. CONCLUSIONS: The participatory design served as a usable approach to designing and developing a tailored mHealth solution for patients with IBD and their health care professionals in an outpatient clinic. On the basis of the iterative design process with mutual learning and democratic voices, the participants had a significant impact on the solution, which reflected users' needs and resulted in the effective adaptation of the solution to the clinical setting.