OBJECTIVES: Within a context where patient-centered care is deemed critical for improving the quality of healthcare systems, the role of Patients’ Advocacy Groups (PAGs) may be pivotal for making patients’ voice heard, contributing to enhance patient management, access to treatments and quality of life of patients and caregivers. This study aims at assessing the Italian PAGs, their involvement in the national health care ecosystem and their expected role for the future.

METHODS: In March 2022, over 100 Italian PAGs were invited to answer a survey to identify current activities and their expectations for the future. Activities were grouped in 5 macro areas: 1) Association Support (fund rising, personnel’s training courses, etc.); 2) Activities for patients and caregivers (logistic, therapy support, home assistance, education); 3) Projects with Hospitals and HCPs (education, patient management models, telemedicine etc.); 4) Social and institutional advocacy (disease awareness campaigns, regional and national standards of care, health policies); 5) Scientific activities (design of clinical trials, scientific publications).

RESULTS: 62 PAGs responded to the survey covering several therapeutical areas: onco-hematology (N=13), immunological diseases (N=10), rare diseases (N=16), infectiology (N=7). Current activities are mostly dedicated to support patients and caregivers, followed by projects with Hospitals, HCPs and Public Institutions. PAGs expect to increase their advocacy and scientific role, supporting the definition of new patient management models (homecare, telemedicine) and supporting the design of clinical trials.

CONCLUSIONS: Considering the rising relevance of patients’ involvement in healthcare decision, the already relevant role of PAGs in the Italian ecosystem is expected to increase more and more in the future. Increasing focus is expected in their contribution for the design of patients’ management models, clinical research and healthcare policies while keep advocating for guaranteeing access to innovative treatments and homogeneous level of assistance across regions.