The Copernico project aims to apply a value-based healthcare approach, that could be personalised to take into account different patients’ needs, to enhance the care experience of individuals affected by Hereditary Angioedema (HAE) and treated at the Maugeri Research Hospital, Milan.

The research team designed a new pilot for optimal management for Maugeri’s HAE patients following the core criteria of VBH to achieve two main outcomes: 1) improvement of the patient experience and consequently, clinical outcomes; 2) organisational improvement and cost-effectiveness.

To achieve those main outcomes, the project was an observational study using a mixed-method approach, consisting of:

  • Co-design of an optimal HAE care pathway with IPU
  • Anthropological conversations with patients and their caregivers

A new optimal care pathway was co-designed with HAE IPU at Maugeri through 4 workshops. The pathway considered clinical outcomes as well as patient experience, which was addressed by involving members of the national HAE patients’ association A.A.E.E. Onlus.

In parallel, the research team conducted semi-structured qualitative interviews through anthropological conversations. The conversations involved 17 subjects, identified by the patient association and the HAE Unit. This cohort consisted of 9 patients affected by HAE, 6 caregivers affected by HAE, and 2 non-affected caregivers, with equal representation of males and females to ensure the unbiased, comprehensive assessment of data collected during the conversations.

Due to the familial nature of the condition, insights from the conversations show that patients, their families, and caregivers form a true community with the clinical team. They trust each other and share experiences and knowledge about the disorder. Families are active players in their care management.

Preliminary results:

  1. The IPU team highlighted the importance of streamlining the diagnosis process through a two-step programme: (1) development of a collaboration with specialised laboratories (at the University of Milan) on the territory for the first two years, (2) while setting up Maugeri’s laboratory with the equipment needed to conduct HAE diagnostic exams in-house.
  2. Patients and caregivers expressed the need for psychological support throughout the different phases of the care pathway. Some prefer it in the beginning during diagnosis, especially when coping with a new diagnosis in the family, oftentimes their own children. Others prefer one-off consultations when necessary. Consequently, the IPU team decided to introduce an integrated mental health pathway consisting of 10 sessions every 2 weeks.
  3. To measure the outcomes of the new care pathway, the research team and the IPU unit designed a digital platform in collaboration with the UK digital partner. The platform aims to measure
    1. PROM through HAE-QoL survey sent every 3 months
    2. EMA (Ecological Momentary Assessment) to study HAE patients’ thoughts and behaviour in their daily lives, sent every 2 weeks in between mental health sessions.

The project is the only one of its kind at national and international levels and hence, has the potential to set an example for a scalable VBH model applicable to care pathways for HAE and other rare diseases, not only in Italy but also on global scale.