Pisana Ferrari, Secretary General of the Alliance for Pulmonary Hypertension and President of the Italian Pulmonary Hypertension Association AIPI, was invited to deliver the opening presentation on patient perspectives and empowerment at the “World Symposium on Pulmonary Hypertension Updates” conference in Bologna on July 3-5, 2025. Unfortunately, due to health issues, she had to withdraw shortly before the event. Fellow patient advocate, and 7th World Symposium Task Force member Hall Skaara, kindly accepted to deliver her presentation titled: “From Patient Empowerment in Pulmonary Hypertension to Patient Reported Outcome Measures (PROMs): the Patient Perspective”.
Pisana’s talk started with a definition of patient empowerment, using the World Health Organisation (WHO) framework as “a process through which people gain greater control over decisions and actions affecting their health.” She described how patient empowerment began with collective advocacy movements in the 1980s-90s (HIV/AIDS, breast cancer), leading to the first pulmonary hypertension patient associations in the 1990s. The internet accelerated this process by providing access to information and knowledge exchange opportunities on a scale previously unknown. At the community level, the pulmonary hypertension patient movement has achieved significant recognition, with 90 associations across five continents now collaborating with major health authorities, scientific societies, regulatory agencies, and industry. Key achievements include World Pulmonary Hypertension Day (founded 2012), patient co-authorship of scientific publications, in particular the European Society for Cardiology and European Respiratory Society (ESC/ERS) clinical guidelines on pulmonary hypertension (2022).
However, Pisana acknowledges that individual-level empowerment faces ongoing challenges including health literacy gaps, technology access issues, cultural barriers, paternalistic medical approaches, and language barriers. Patient associations address these through educational materials, support programs, and multilingual resources.
The presentation concludes by positioning Patient Reported Outcome Measures (PROMs) as powerful empowerment tools that give patients a direct voice in their care, validate patient experiences, encourage self-monitoring, and improve patient-doctor communication. Ferrari emphasizes that while significant progress has been made in transforming patients from passive recipients to active partners in healthcare, empowerment remains “a work in progress, not a completed task.”
Read Hall’s comprehensive report of the conference on the website of PHA Europe at this link
Download Pisana Ferrari’s slides here:
From left: PROF. GERALD SIMONNEAU, HALL SKAARA AND PROF. DAVID MONTANI
