Eurordis - Rare Disease Europe

Matt Bolz-Johnson: How the Patient Journey can improve care pathways 

In health systems, a ‘care pathway’ resembles a detailed care plan, charting each step for a specific patient population to make sure they safely and efficiently reach the best outcomes and quality of life. Care pathways gather together the guidelines and clinical protocols in one place that provide instructions to deliver optimal care and treatment to patients with specific conditions to the treating clinicians and relevant professionals across health and social care. 

The term ‘care pathway’ is not uniformly used. It may appear as a ‘patient pathway’, ‘clinical pathway’, ‘healthcare pathway’, ‘integrated care pathway’, or ‘model pathway’, each term suggesting a different focus. For instance, a ‘clinical pathway’ typically refers to the care process in a specific clinic or hospital department, whereas a ‘patient pathway’ might describe a patient group’s broader experience through the health system, from initial presentation through diagnosis, treatment, and follow-up. A ‘model pathway’ usually signifies an ideal blueprint for care and treatment that is specific to a defined patient population. 

While these types of care pathways may overlap, their fundamental purpose is to outline how the needs of a patient group should be best taken care of in the health system. They vary in detail but aim to enhance safety, optimise resource usage, ensure evidence-based care, and maximise patient satisfaction and outcomes. 

These pathways are multi-professional and summarise existing guidelines, detailing what happens, when, and who is responsible at each stage. They serve as a reference for everyone involved in care delivery. However, care pathways can often fall short of meeting the complex needs for people living with a rare condition due to the scarcity of knowledge and data available for many rare conditions which leaves significant gaps in clinical guidelines.

A new approach

In 2019, to address these shortcomings, I participated in developing a new approach to capture the needs and lived experience of people living with rare conditions and captured this essential knowledge and expertise into a ‘Patient Journey’ with ERN GENTURIS, the European Reference Network for Genetic Tumour Risk Syndromes. 

The Patient Journey is an innovative approach, functioning as both a method and a dynamic document. As a method, it involves charting patients’ needs and experiences to their clinical presentation at key stages of their healthcare journey, covering medical and psychological aspects. As a document, it offers a visual and detailed matrix of these needs, enhancing communication and understanding between patients and family members as well as with the healthcare professionals. 

Since its initiation by ERN GENTURIS, other European Reference Networks have adopted the Patient Journey. However, further progress is required in its wider application, now that the Patient Journey has been acknowledged as a valuable tool that centres the needs of people living with a rare condition at the heart of the ERNs, guiding the Networks’ actions to meet these needs. 

This approach not only fills the gaps in care pathways for rare conditions, but can be used to ensure that clinical guidelines are developed to meet patients’ specific and diverse needs and experiences, from symptom onset to follow-up. A Patient Journey offers a patient-centred view of a rare condition, identifying unmet needs to address healthcare gaps and enhance health services by concentrating on the patient’s daily life perspective. 

Branching out

EURORDIS and the ERNs are actively working to implement the Patient Journey across all disease areas, empowering patients to inform care pathways based on their experiences. 

The Patient Journey offers a straightforward way to improve the quality of healthcare services by making visible the needs and experiences of those with lived experience, who have become experts by experience. 

Our rare disease community have 30 million people with lived experience that can be harnessed and captured using the Patient Journey approach which would provide rich knowledge and lived experience that can be leveraged by the ERNs and supporting to unlock the power of the networks. EURORDIS calls on the patient organisations and members to get involved in supporting the Networks to address your needs through using the Patient Journey approach. 

In Europe, 30 million people live with a rare disease. The lived experiences of these individuals and their families, and the rich and intimate knowledge that they have acquired from these lived experiences, can – and must – be used to improve healthcare through the Patient Journey approach. This strategy straightforwardly provides crucial insights, bolstering the effectiveness of ERNs. That is why EURORDIS is urging patient organisations and members to actively deploy the Patient Journey approach, aiding the ERNs in meeting their needs. 

Resources:

Find out more about developing patient journeys or care pathways from: 

• “Patient Journeys”: improving care by patient involvement, European Journal of Human Genetics 
• Patient journey experiences may contribute to improve healthcare for patients with rare endocrine diseases, Endocrine Connections (2022) 
• Designing rare disease care pathways in the Republic of Ireland: a co-operative model Orphanet J Rare Dis. (2022) 
• Speak Up. Listen Up. Follow-Up guide: A brief guide for rare disease patient organisations on how to listen to the community, EURORDIS-Rare Diseases Europe 

Matt Bolz-Johnson, Mental Health & Wellbeing Lead and Healthcare Advisor, EURORDIS-Rare Diseases Europe 

Disclaimer: As a Staff Blog, the opinions – including possible policy recommendations – expressed in this article are those of the author and do not necessarily represent the views or opinions of EURORDIS. The publication of this article on the EURORDIS website does not equate to endorsement.