When We Meet in a Clearing: Making Research Accessible to Patients and Patient Experience Accessible to Clinicians

摘要

It was summer and Arif was undertaking a work experience with our cardiac engineering team. Arif was an 18-year-old patient with complex congenital heart disease and he had expressed an interest to see that other, hidden side of the hospital that he knew so well. By then he had already had a model of his heart made for a clinic appointment, and he had also taken part, with 6 other patients of similar age, in an artist-led creative workshop that we had devised and in which he had started to explore his narrative. He was a young man of few words and it was not explicit whether it was the mix of technical and creative work that sparked his curiosity. But he did e-mail us and we agreed on a 2-week visit.