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Description
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.
Summary of project results
The project addresses the exclusion of patients living with chronic diseases such as diabetes, irritable bowel syndrome, lymphoma and others. This is a group vulnerable to various forms of social exclusion: distancing, devaluation and stereotyping. Most of the changes that are taking place in healthcare concern the form of practice (e-visits, tele-visits), but not a paradigm shift in thinking about patients. They are still not treated as partners, their potential for expertise is not recognised - and they are experts by experience. Disease is reduced to a medical challenge and its socio-psychological dimension is downplayed. Although there are about 5300 organisations working in the field of health care in Poland, only about 10% are active in the field of patient empowerment or self-advocacy.
The project added a self-education module to the patient-to-patient mentoring application developed by the Project Promoter. A Patient Participation Project Group was selected from among the users of the application (which connects people with experience of the disease with patients recently diagnosed) to research and diagnose the needs of the community. The group then designed a module base and two types of clubs - communities and courses. The clubs allow people to meet other people with similar difficulties and to deepen their knowledge of the disease. Educational materials (online mini-guides) were also produced: an article guide ''How to support a person with an illness'', three infographics explaining what critical thinking is and how to search for reliable information on the internet, and 13 different informative and self-help articles written by expert patients. These activities were accompanied by an outreach campaign in which other patient groups published content on living with the disease.
The app is used by patients with chronic diseases (including cancer) in Poland. They have been empowered in terms of self-advocacy, improved their skills in critical thinking, taking responsibility for their own words, helping wisely, taking care of their own balance, medical communication, building partnerships with doctors. An important outcome of the project was the exchange of patients as experts through experience.