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

Thank you to the whole PH community for their participation and contributions to the first-ever Pulmonary Hypertension Global Patient Survey (PH GPS). Phase 1 was launched in October 2023 in 17 languages, with seven more added in February 2024. Phase 1 is now closed, having received a huge response, with almost 4,000 patients and carers participating in over 85 countries. The research team is analysing the results and finalising reports. The findings will be pivotal in shaping future research and enhancing healthcare to benefit patients globally. The survey findings, as well as details about phase 2, will be shared on the PVRI website. Early data was presented at the PVRI 2024 Congress, and further analyses followed 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/GMT. If you’re interested in joining this Workstream, please get in touch.