Knowing disease: Patients first is the result of an international movement that started in 2008 in the USA and then extended to Europe in order to reposition patients as the focus of diagnostic procedures and treatment of “their” disease. The recognition of a lack of understanding – by practitioners and patients – regarding the complexity of pathological reports led to the production (by a group of pathologists from the Johns Hopkins University) of a Frequently Asked Questions (FAQs) list. The highest worldwide incidence of prostate, lung, breast, colon and oesophagus cancers was the key criterion for related biopsies and precursor lesions report clarifications. This was the baseline for the development of the project in Portugal.
The starting point of the Portuguese version of the project was the translation of the FAQs, which was done by pathologists of the São João Hospital Centre (Porto). The funding from the Calouste Gulbenkian Foundation in 2011 allowed us to reshape and expand the original US model, through the close collaboration with Sociology, Biomedicine and Civil Society. Health sociologists, experts involved in the diagnosis, monitoring and treatment of the various pathologies, patients and patient organisations are the agents involved in the process.
First hand encounters with the disease were reported through interviews performed with cancer patients. During this first phase of data-gathering interviewees were given a personalised FAQs list for later assessment in a second interview. The analysis of the narratives revealed weaknesses in health literacy, which conditions effective participation in the co-management of the disease.
AIMS AND METHODOLOGY
- Produce a set of documents geared towards the particular characteristics of the pathologies within the project, in cooperation with all of the participants;
- Establish a continuing collaboration between experts and patient groups for the production of accessible materials for non-specialists;
- Contribute to creating conditions that enable patients to identify and understand medical terminology related to their clinical condition, particularly in pathology reports;
- Raise awareness of the importance of an active participation in the trajectory of the disease, thereby encouraging the self-empowerment of patients;
- Evaluate the use of the information materials produced within the project and their effects on the knowledge and empowerment of patients.
To fulfil these purposes, a qualitative research methodology was performed. Semi-structured interviews with 143 cancer patients provided the primary basis for the analysis. This strategy highlighted the need of the study to not be confined to the diagnosis alone, but broadened to other cancer dimensions that go beyond the medical scope. In order to complement the gathered information, interviews with clinicians and representatives from patient organisations were also conducted. The final validation process consisted of focus groups with the patients who had initially been interviewed in order to assess the possible need for the rewording of booklets prior to publication.