Patients’ Advocacy Groups in Italy: An Updated Perspective on Activities and Future Directions
Author(s)
Paola Maria Vezzola, MSc1, Nicoletta Caputo, BSc1, Sara Cazzaniga, MSc1, Alessandra Di Costanzo, MSc1, Isabella Cecchini, MSc1, Beatrice Canali, MSc2, Chiara Vassallo, MSc2, Duccio Urbinati, MSc, PharmD1.
1IQVIA SOLUTIONS ITALY S.r.l., Milan, Italy, 2IQVIA, Real World Solution, Milan, Italy.
1IQVIA SOLUTIONS ITALY S.r.l., Milan, Italy, 2IQVIA, Real World Solution, Milan, Italy.
OBJECTIVES: In the evolving healthcare landscape, incorporating the patient perspective has become essential. Patient Advocacy Groups (PAGs) are increasingly recognized as key stakeholders in aligning institutional healthcare with the experiences of patients and caregivers. This study updates previous research on the role of Italian PAGs, exploring how they have expanded their scope, diversified their initiatives, and reshaped strategic priorities in response to emerging healthcare challenges.
METHODS: In March 2025, a web-based survey investigating activities conducted over the past three years and gathering insights into future priorities was distributed to the most relevant PAGs active in several therapeutic areas in Italy. PAGs’ activities were grouped into six macro-areas: 1) Public awareness and education (e.g., disease information campaigns, trainings programs); 2) Activities for patients and caregivers (e.g., psychological support, home care, legal assistance); 3) Collaboration with hospitals and healthcare providers (e.g., co-design of care pathways, telemedicine); 4) Scientific activities (e.g., clinical trial design, scientific publications); 5) Social and institutional advocacy (e.g., engagement with policy-makers, contributions to health policy); 6) Fund raising (e.g., support for association activities, research).
RESULTS: 115 PAGs participated, covering onco-hematology (28%), immunological diseases (10%), rare diseases (31%), infectiology (6%), and others (25%). PAGs activities were mainly dedicated to information, education and disease awareness raising projects, enhancing the collaboration with institutions, hospitals, and industries. Significant efforts were also reported in meeting patients’ and caregivers’ needs through holistic support, including emotional assistance, free health screenings, and legal and financial aid. PAGs expect to further increase their advocacy and scientific role focusing on service innovation, evidence-based communication, and targeted educational initiatives.
CONCLUSIONS: Italian PAGs are evolving from traditional support roles into proactive partners in healthcare innovation, research, and policymaking. Their expanding scope underscores the need for structured collaboration and institutional recognition to amplify the patient voice, foster system-wide integration, and promote equitable, patient-centered care.
METHODS: In March 2025, a web-based survey investigating activities conducted over the past three years and gathering insights into future priorities was distributed to the most relevant PAGs active in several therapeutic areas in Italy. PAGs’ activities were grouped into six macro-areas: 1) Public awareness and education (e.g., disease information campaigns, trainings programs); 2) Activities for patients and caregivers (e.g., psychological support, home care, legal assistance); 3) Collaboration with hospitals and healthcare providers (e.g., co-design of care pathways, telemedicine); 4) Scientific activities (e.g., clinical trial design, scientific publications); 5) Social and institutional advocacy (e.g., engagement with policy-makers, contributions to health policy); 6) Fund raising (e.g., support for association activities, research).
RESULTS: 115 PAGs participated, covering onco-hematology (28%), immunological diseases (10%), rare diseases (31%), infectiology (6%), and others (25%). PAGs activities were mainly dedicated to information, education and disease awareness raising projects, enhancing the collaboration with institutions, hospitals, and industries. Significant efforts were also reported in meeting patients’ and caregivers’ needs through holistic support, including emotional assistance, free health screenings, and legal and financial aid. PAGs expect to further increase their advocacy and scientific role focusing on service innovation, evidence-based communication, and targeted educational initiatives.
CONCLUSIONS: Italian PAGs are evolving from traditional support roles into proactive partners in healthcare innovation, research, and policymaking. Their expanding scope underscores the need for structured collaboration and institutional recognition to amplify the patient voice, foster system-wide integration, and promote equitable, patient-centered care.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PT16
Topic
Patient-Centered Research
Topic Subcategory
Instrument Development, Validation, & Translation, Patient Engagement
Disease
No Additional Disease & Conditions/Specialized Treatment Areas