Associação Portuguesa de Investigação em Cancro
KNOWING DISEASE: patients first
KNOWING DISEASE: patients first
The aim of «Knowing disease: patients first» project is to analyse the relationship between the oncological experience of disease/illness and the correspondent biomedical knowledge.
This research, carried out at Ipatimup and funded by Calouste Gulbenkian Foundation, was based on interviews with cancer patients, whose experiences, doubts and cancer illiteracy inspired the development of a series of booklets with the seal of the Portuguese Directorate General of Health and the participation of National Program for Oncological Diseases and National Program for the Promotion of Healthy Eating.
The booklets center around colon, esophagus, breast, prostate, lung, stomach, bladder and thyroid cancers. In order to overcome fears, myths and incomprehensible medical terms, they contain a clear, accessible and educational language. The project development included booklets construction for the eight malignant pathologies addressed. This collaborative work, conducted under Sociology coordination, brought together experiential and biomedical knowledge. Oncological patients and health professionals, namely pathologists, clinicians, nutritionists and psychologists, took part in that process.
The enclosure of personal and social dimensions resulting from cancer patients´ experience represents an innovative approach concerning the production of informative health material. ASPIC endorses this approach, providing the booklets access here.