In today’s healthcare landscape, the patient’s perspective holds increasing sway in pivotal decision-making processes across various sectors, including governmental agencies, healthcare institutions, insurance entities, and corporate entities. As the importance of incorporating patient feedback grows, initiatives aimed at equipping patients with a deeper understanding of these processes and objectives become paramount.
Recognizing this need the Belgian “Patient Expert Centre” organises training programs and fosters collaboration among diverse stakeholders to amplify the patient’s voice in healthcare discourse. Comprising both general and disease-specific modules, the training entails weekly online sessions aimed at empowering patients with comprehensive knowledge.
Last year, eight members of the Belgian patient association Pulmonale Hypertonie vzw, living with pulmonary hypertension, completed this rigorous training, earning their certification as ‘patient experts. Armed with this distinction, they are poised to serve as invaluable guides within their community, navigating fellow patients through the intricacies of the healthcare system and advocating for their collective interests.
PROGRAM OF TRAINING COURSE
The first part of the program is followed by all candidate patient experts together, across all disease areas. This general part of the training focuses on health policy in Belgium, patient rights, ethics, regulations, understanding of the drug development process, dealing with health data, the difference between credible and non-credible information, patient empowerment, dealing with and communicating about your illness, informal care and the position and task of a patient expert in the health landscape.
The second part of the program focuses on disease-specific information, in this case pulmonary hypertension. The curriculum includes information to understand the disease and treatment and to know the current state of scientific research in pulmonary hypertension. The candidate experts learned what it is like to live with the disease from different perspectives and which organisations are important both nationally and internationally. The eight patient experts pulmonary hypertension were taught by top experts such as Professor Marion Delcroix (KULeuven), Professor C. Belge (KULeuven) and patient representatives such as Wendy Vansteenkiste (P.H. België), Eva Schoeters (RaDiOrg), Pisana Ferrari (Alliance for Pulmonary Hypertension, Hall Skaara (PHA Europe) and Gergely Meszaros (ERN-Lung).
Here are the four of the eight patients who took the training and have received their certificate!
Read more at this link on on the Pulmonale Hypertensie vzw website.