Work Package 5: Patient Journey

Patient Journey & Health Economics 

The objectives of Work Package 5 are to analyse the patient and caregiver journey, define key events from the patient and caregiver perspective, and provide a digital pathway for future analyses. There remains an unmet need for an effective treatment for ALS. However, it is equally important to understand how best to capture the wellbeing of patients and caregivers as the disease progresses, and to determine the personal, societal and economic impact both of illness and interventions. 

The patient journey is a sequence of events that usually begin when a person develops a need for care. The ‘journey’ encompasses touchpoints of experience. Understanding how people with ALS and their families navigate and experience the healthcare system is essential to maximising the potential of novel treatments and services. In addition, we need to note that patient interactions extend beyond the healthcare system. Adopting an ecological model to frame the illness journey, and widening the research lens includes patients, caregivers and family members in ‘journey analyses’. Patient/caregiver journey analysis can help us to explore and identify quality of life, service use, and effective treatment patterns based on individual characteristics and experiences. We need to look at the often-subtle relationships between a condition of illness and the domains of a person’s life. 

This work package will involve characterising the experience of patients and informal caregivers across Europe, exploration of cultural differences in outcome measures across five countries in Europe and understanding the role of context in cross-national healthcare ecosystems.

Leader: Dr Miriam Galvin