Patient Engagement & Empowerment Workstream

This Workstream seeks to: 

• understand the needs and perspectives of people living with PH, their views on their care & treatment, and participation in clinical research 
• share and act on these findings 
• increase awareness of PH among medical professionals to improve early diagnosis, standards of care and quality of life. 

Pulmonary Hypertension Global Patient Survey

In October 2023, the Workstream launched the first-ever Pulmonary Hypertension Global Patient Survey (PH GPS) in 17 languages, adding seven more languages in February 2024. 

The PH GPS survey will remain live until summer/autumn 2024, and other languages are being added. 

The first detailed analysis of over 3,700 completed survey responses is underway, and we hope this will shed light on patients' and caregivers' lived experiences. Early data was presented at the PVRI 2024 Congress, and further analyses will follow at WSPHA and ERS 2024. 

We believe that this work will have a transformative impact on PH diagnosis, treatment and care and, for the first time, shed light on a global patient perspective. With this in mind, the PVRI has committed to making this a permanent part of their work. With the help of our partners, they aim to run the survey every 3-4 years so that our PH community can develop and learn from a truly rich body of data. 

The Workstream meets bimonthly on the third Wednesday of the month at 14:00 BST.