Patients living with chronic diseases are at risk of various types of social exclusion: distancing, devaluation, and stereotyping. Most changes in healthcare concern the form of practice (online appointments, teleconsultation), but not the approach to patients (partner, expert due to their experience) or an illness, due to the social and psychological aspects. There is no system of long-term mentoring regardless of location, intended for anybody with a chronic illness.
This project aims to empower patients suffering from a chronic diseases and give them a sense of agency and self-advocacy through patients sharing experiences, being experts due to their experience.
We will select, from among the users of our free application (connecting people with experience of illness with newly diagnosed patients) a Patient Participation Group to examine and diagnose needs of community representatives, and to create a self-study module for mentors (content and tools for future experts, advocates and guides for other patients). We also envisage meetings to find solutions to problems in mentors’ work, production of learning materials (online mini-guides), production of texts on www.pacjencipacjentom.pl by patients and experts, and Instagram takeover – a long-term awareness campaign (content on living with an illness published successively by patient groups).
Fifty patients will participate directly, fifteen of whom will be involved in self-advocacy.