Tailored communication between inflammatory bowel disease patients and healthcare professionals: the development of an app using participatory design. (Preprint)
Authors: Fallesen Janni Petersen , Krogh Marie Louise , Knudsen Torben , Minet Lisbeth Rosenbek , Kjeldsen Jens , Skjøth Mette Maria 
Published: December 2024

BACKGROUND

Patients with inflammatory bowel disease have periods with flare-ups including abdominal pain, diarrhea, bloody stools and systemic symptoms that may influence negatively on 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 healthcare 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 healthcare professionals by phone or email when needed.
mHealth interventions have shown to support patients with flexible, timely and ongoing communication with healthcare professionals. However, the most prevalent functions of present apps for patients with inflammatory bowel disease are tracking disease symptoms and accessing information. Additionally, there has been limited patient and clinician involvement in the design and development of eHealth apps for patients with inflammatory bowel disease. Although it is emphasized that patients with inflammatory bowel disease should be involved to identify tools and functionalities that the patients find relevant and effective.

OBJECTIVE

Using participatory design, this study aimed to design and develop a communication app, My Hospital, for patients with inflammatory bowel disease to support tailored communication between patients and healthcare professionals.

METHODS

Via participatory design, we conducted three focus groups, four mock-up workshops and two prototype tests with patients, healthcare professionals and an IT designer to co-design a prototype. The process was iterative to ensure that all stakeholders provided input into the design and outcome. This approach enabled continuous revision of the prototype until an acceptable solution was agreed upon. Data were analysed according to the steps: plan, act, observe and reflect in the methodology of participatory design.

RESULTS

Fourteen patients with inflammatory bowel disease aged 18–65 years and nine healthcare professionals from two outpatient clinics in Denmark contributed to the app design. An intervention that reflected users’ needs and requests to support patients’ access to and communication with healthcare 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

We developed an app, My Hospital, in close collaboration with patients, healthcare professionals and an IT designer and by means of mutual learning and democratic voices. Thus, the study participants had a significant impact on the app, which reflected users’ needs and was customised to the clinical setting. This app may improve access and tailored communication between patients with IBD and healthcare professionals.