Contribution short abstract:

The BUR-EB project developed a collaborative and multi-situated ethnographic process with patients of Epidermolysis bullosa, a rare disease, and their organizations. We will reflect on the meaning of careful research in our project and address the challenges of collaboration that we encountered.

Contribution long abstract:

Epidermolysis bullosa is a rare disease characterized by the fragility of the skin, leading to varying levels of severity. This condition encompasses four main types and over 30 subtypes, highlighting its complexity. There is no cure available and scientific knowledge is limited, as in most rare diseases. The burden of care for many patients and their families can be immense, particularly evident in the daily dressing changes, which may involve up to 5 hours a day.

In the BUR-EB project, a collaboration of seven EU countries, we have designed a methodology that incorporates patient associations as partners in research (Rabeharisoa and Callon). We developed a collaborative and multi-situated ethnographic process, which weaves a network of supportive relationships to facilitate careful research (Law and Lin) with a flexible and staggered participation strategy that takes into account the burdens and needs of patients and their families, but also patient organizations, clinicians and researchers. The project is based on the concept of ecology of knowledge as a learning device (Casado) and proposes to generate knowledge that improves self-care and health care for the disease. It involves mapping both biomedical/clinical and social knowledge through scientific literature, patient organizations and with groups of patients. The results will be a qualitative systematic review, disease trajectory maps and the development of care guidelines on the topics that patients have prioritized.

In this paper, we will explore the meaning of careful research in the BUR-EB project and address the challenges of collaboration that we encountered.