Self-management tool for sarcoïdosis patients of the Erasmus MC using the data-driven 'Patient Journey Community Mapping' approach

Abstract

Sarcoïdosis is a complex and rare disease, which can affect any part of the body. The disease has symptoms, side effects and treatment plans varying per patient. In the Netherlands, yearly up to 7000 to 8000 people are diagnosed with sarcoidosis, in an acute or chronic form (Sarcoïdose - UMC Utrecht, n.d.). In the Netherlands, there are three sarcoïdosis specialist centres, and Erasmus MC is one of them. The Interstitial Lung Disease department of the Erasmus MC is trying to provide the right care for sarcoïdosis patients. However, together with the Convergence Program, a collaboration between the Delft University of Technology and the Erasmus MC, they analyse how the care at the hospital can be optimised. However, for patient care at home, there is still room for improvement, as expressed by medical experts. In this project, the methods and results lead to a patient journey map that indirectly improves the sarcoïdosis patient journey. The method of Patient Community Journey Mapping from Jung (2023) sets the base for the analysis. This is a data-driven approach to utilising online patient stories for machine learning. Together with a data scientist from Erasmus University, posts of wijhebbensarcoidose.nl are analysed and converged into a patient journey map. Topic listing is applied to the database of 7500 posts, followed by quantification of popular topics, and a sentiment analysis to show the urgency of a topic. The conducted patient journey map consists of 1) a medical journey path and 2) the topics derived from the computational analysis. A co-creation session with pulmonologists and specialist nurses was done to validate the resulting patient journey map. Followed by an interview with a patient to validate this map. These sessions were organised to get an even more realistic patient journey map. Sarcoïdosis is a complex disease, and often multiple topics are discussed in one post. Therefore, an analysis is done to see the co-occurrence between topics. From this resulted that the key value is formed by everything related to finding a balance in life with sarcoidosis. The patient journey map emphasised multiple needs that are mentioned negatively, according to the sentiment analysis. This led to three important patient needs to take into account for this project. Together with the key value, the main four patient needs are the following:

1. Help patients with finding a balance in life after their diagnosis.
2. Give patients a clear overview of their medication intake.
3. Monitor the patients’ quality of life sarcoidosis aspects.
4. Provide patients with information about sarcoidosis-related topics.

These formed the base of the designed system in the form of an application:
Sarcoïdosis voor jou. This application has four main pages where the focus on each page is a different need. The self-management tool can be created with the internal company Digitaal Verbonden. Together with the ILD department, the application can be created with some additional research steps. This project can argue why certain functions should be implemented in the general Digitaal Verbonden application for Erasmus MC patients.