The Access to Care Workstream aims to identify and address knowledge gaps and contextual variations in PH care across nations. In this way, it hopes to enhance worldwide access to care, in diagnosis, education, and treatment for PH.
A recent focus of the group was the Access to Care survey which was launched in April 2023 and aimed to identify and map inequities in access to PH care. Over 150 PH centres responded, providing data on the local challenges healthcare professionals face in diagnosing and treating PH patients. The group worked with PVRI’s Regional Task Forces to capture more data from low- and middle-income countries.
To learn more, watch the presentation on A global assessment of access to care for patients with PH.
If you’re interested in joining this Workstream and helping to shape strategies that enhance global access to PH care, please get in touch.
Leaders
Vijay Balasubramanian, Valley Advanced Lung Disease Institute
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.
