During last week’s #ILC2022 meeting in London, Louise Campbell took the opportunity to sit down with PBC Foundation CEO and Fatty Liver patient Robert Mitchell-Thain to discuss patient engagement from their own perspectives, Louise as a longtime hepatology nurse and Robert as a patient advocate and NAFLD patient.
Robert starts by discussing his own experience with Fatty Liver disease. First, he notes the importance of patients boldly define themselves as patients and take ownership of the word “Patient.” As he notes, doctors are only involved with patients during brief, infrequent office visits while patients themselves live the part every day when making a range of decisions about their healthy (or not so healthy) lives.
Louise describes her excitement at seeing the data the British Liver Trust, Echosens and e-Scopics have collected while testing people at the meeting. She goes on to mention data from the MAESTRO NAFLD-1 trial, where patients skipped an average of two months of doses due to logistics related to the COVID-19 pandemic, but still showed clinical benefit. Sharing that kind of data with patients might make them feel more comfortable resuming medication after one (or a few) missed doses.
Robert goes on to discuss his own “day of diagnosis”…his reaction to the suggestion about losing 10-15% of his body weight and his recognition that the patient’s urge at a moment like that is to “fight or flight.” He goes on to note that this kind of emotional response is not solution-oriented so that patients and providers alike would do well to consider revisiting how to achieve goals like 10% weight loss at a more rational moment when the patient can focus on solutions. (Robert reminds us that from the moment the patient receives a diagnosis until they leave the physician’s office, they fail to retain 40-70% of what they have been told.)
In the end, Robert would like to see more patient experience and patient involvement presentations next year, while Louise hopes for a successful NASH drug Phase 3 study that might point the way toward approval. They go on to discuss some issues around PBC before wrapping up the conversation.