PH Global Patient Survey becomes a new PVRI Task Force
6 March 2025
We’re pleased to share that the Pulmonary Hypertension Global Patient Survey (PHGPS) - a key project of the IDDI Patient Engagement & Empowerment (PE&E) Workstream – is now a stand-alone Task Force.
The change was proposed by PE&E Co-chair, Joanna Pepke-Zaba, and will ensure that the IDDI Patient Engagement group will now have the capacity to focus on other unmet patient needs.
The Workstream aims to understand and respond to the needs and perspectives of patients living with PH, focusing on their experiences with care, treatment, and participation in research. For the last three years its main focus has been the global survey, and the data now emerging from this research has identified 10 key patient priorities, which the PE&E group are keen to investigate.
The move also brings changes in leadership, and Joanna Pepke-Zaba, University of Cambridge, is stepping down from her role as Co-chair of the Workstream. Joanna was a key founder of this group and has led and guided its success ever since. Joanna, we send you our heartfelt thanks and gratitude for your expertise and leadership, and for your wonderful energy, inclusivity and kindness. It’s been a joy working with you!
Matt Granato, CEO of PHA, is also stepping down as Co-chair of the Workstream to take on the role of Chair of the new PHGPS Task Force. Thank you Matt - we look forward to great things!
Finally, we are delighted to welcome the new Co-chairs of the Patient Engagement group: Wendy Gin-Sing, PH Nurse Consultant at Hammersmith Hospital, Imperial College NHS, and Hall Skaara, a founding member and past President of the Norwegian Pulmonary Hypertension Patient Association. Together they bring extensive clinical experience and a deep understanding of patient engagement and advocacy.
This transition marks an exciting new chapter for both groups, ensuring continued progress in patient engagement and global research on PH. Watch this space!
Patient Engagement & Empowerment Workstream Pulmonary Hypertension Global Patient Survey (PHGPS)
Interested in accessing global data on PH patient experience?
Almost 4,000 patients and carers across 85 countries completed Phase 1 of our PH Global Patient Survey (PHGPS). Questions across all PH groups included diagnostic tests & timelines, genetic testing, treatments, financial burdens, hospital visits, research participation, quality of life, telemedicine, patient-reported outcome measures, and self-monitoring with digital technology. The findings have the potential to improve patient care, guide future research and help us address unmet needs.