Presentation " Managing patient communities"
As a patient with lived experience of cancer, Mirka Š. entered healthcare 18 years ago and for more than a decade was active in patient communities. She saw numerous barriers on the part of systems as well as people themselves, including the fact that we don’t always tell the whole truth at the doctor’s. Her team is therefore building Livi – a community platform that brings together trust and meaningful data to advance person-centered care. The speaker openly pointed out a well-known yet rarely acknowledged fact: when collecting health data, people often embellish or exaggerate information. If we want healthcare systems to truly be grounded in a person’s needs and preferences, we need to know their baseline and accept it as well. Today, the term “person at the center” is used often, but without trust and high-quality input data it remains just a slogan. The goal is therefore to create conditions in which truthful information is collected naturally and without fear.From personal experience to a person-centered approach
