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.
The Workstream meets bimonthly on the third Wednesday of the month at 14:00 BST/GMT. If you’re interested in joining, please get in touch.
PH Global Patient Survey (PHGPS), a new PVRI Task Force
The PHGPS, a key project of the IDDI Patient Engagement & Empowerment (PE&E) Workstream, became a stand-alone Task Force in March 2025. For the last three years its main focus has been the global survey, and the the data now emerging from this research has identified 10 key patient priorities, which the PE&E group are keen to investigate. The change ensures that the group has the capacity to focus on this and other unmet patient needs.
Our Regional Task Forces don't yet have global coverage. If you're interested in starting one, please contact us.
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.
