Towards Coherent and Effective Self-Management during the Post-Diagnosis Stage

Abstract

Pulmonary Fibrosis (PF) is a rare and incurable interstitial lung disease, which causes lung scarring, leading to an irreversible decline in patients’ lung function and breathing difficulties. In Europe, Pulmonary fibrosis (PF) affects over 400,000 people, and it claims the lives of about 100,000 people each year (EU-IPFF, 2023). In light of the prevailing medical personnel deficit and the stress on healthcare systems, a collaborative synergy between healthcare practitioners and patients becomes indispensable to facilitate the transition of healthcare services from hospital settings to domiciliary environments and to tailor individualized home care.
This endeavor is spearheaded by Erasmus MC, a preeminent specialist center for PF in the Netherlands. In collaboration with the Convergence program and TU Delft, this initiative embarks on exploring the PF patient journey map while develop innovative design solutions. These solutions are aimed at empowering patients to engage in self-management and to enhance their Health-Related Quality of Life (HRQoL).
The overarching methodology of this project adheres to the Enhanced Data-enabled Design (EDED) approach by Jung (2023), which leverages data collected within the community, user, and design contexts and adopts an iterative design process. Firstly, getting inspired by the online patient community data which contains more than 40,000 of patient stories, the initial problem areas that patients have most struggles are defined.
Subsequently, the insights gained in the community context are further examined in the user context. First, the preliminary patient journey map was validated and refined, and the initial problem areas were scoped down through co-creation and interviews with Healthcare Professionals (HP). Secondly, a user behavior study was conducted to uncover PF patients needs in their self-management process by reusing community data and leveraging the Information-Motivation-Behavioral Skills framework. The result of this study addresses the problem of this project, as the primary needs of PF patients to achieve effective and coherent self-management behavior are to acquire information related to five main aspects:
- Understanding and management of medication;
- Understanding and management of oxygen therapy
- Understanding Treatment and medication options
- Lifestyle adjusting to adapt to changes in life
- Symptom monitoring and management
Therefore, the final design goal of this project is defined as: “ How to provide PF patients with required, reliable, and understandable information to support their self-management behavior in their post-diagnosis stage.”
Accordingly, the user needs in information and the design goal collectively establish the foundation design concept: Vomo, a Product-service systems (PSS) to facilitate PF patient self-management in the post-diagnosis stage. The delivery of Vomo is facilitated through an application that is accessible to its end users. The present PSS has undergone a redesign process, drawing inspiration from the preexisting framework of a PSS known as Erasmus MC's IPF-Online. This project presents a comprehensive analysis of the rationale for the redesign of certain functions and proposes strategies for the future implementation of these revised functions inside the existing product.