Patient Engagement & Empowerment Workstream

This PE&E 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. 

The Workstream meets monthly or bimonthly on the 2nd Wednesday of the month at 14:00 BST/GMT. If you’re interested in joining, please get in touch.
 

PH patient resource collection

Developed by the Patient Engagement & Empowerment Workstream, the PH patient resource collection brings together clear, practical resources for people living with PH, their families, carers, patient associations, and wider PH communities.

• How to empower yourself & others
  In November 2025, the workstream launched 'How to empower yourself & others', an 11-part empowerment video series designed to support people living with PH, their families, and carers.

  The group also developed co-brandable guides and leaflets for patient associations to share freely with their members.
  Explore the series

• Understanding clinical trials — coming soon
  The next series in the PH patient resource collection will focus on clinical trials.

  This series will explain what clinical trials are, how they work, what taking part can involve, and what rights patients have when they are invited to join a study. It will also explore how patients can help shape research as partners, not just participants.
   

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. 

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