Phase 1 of the PHGPS was launched in October 2023 in 17 languages, with seven more added in February 2024. It received a huge response, with almost 4,000 patients and carers participating in over 85 countries. The findings will be pivotal in shaping future research and enhancing healthcare to benefit patients globally. Early data was presented at PVRI 2024, and further analyses followed at WSPHA 2024, ERS 2024 and PVRI 2025.
The work of the PHGPS will have a transformative impact on PH diagnosis, treatment and care and, for the first time, shed light on a global patient perspective. Data emerging from the PHGPS has identified 10 key calls to action.
PHGPS Calls to action
Patients should be investigated rapidly to reduce the time to PH diagnosis
Patients should have access to a specialist PH centre with diagnostics and therapeutics including genetic testing, parenteral prostacyclins and mechanical interventions for management of CTEPH
Patient Reported Outcomes Measures (PROMs) should be used to evaluate quality of life and guide holistic care, including psychological and rehabilitative services
Patients should be empowered to engage in shared-decision making in partnership with their clinicians, including managing side effects
Patients with PH should be encouraged to access PH associations by their healthcare professionals for education and other resources
Patients with PH should be assisted in applying to make adjustments to employment or applying for disability support
Patients with PH should be empowered to engage with digital and remote healthcare, where appropriate
Patients with Groups 2, 3 and 5 PH should be better represented in research and specialist clinical care
Patients with PH should be offered the opportunity to participate in clinical research trials and registries, that have ideally been co-designed with patients
Patients and their carers should be invited to participate
The Task Force is now focusing on data sharing, succession planning, enhancing patient engagement, and planning the launch of PHGPS phase 2.
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.
