Empowering People with Pulmonary Arterial Hypertension to Expect More
Summary of work
Pulmonary arterial hypertension (PAH) is a rare and life-limiting type of pulmonary hypertension (PH), killing one in three patients within five years of diagnosis. Research showed that delays to diagnosis and inconsistencies between treatment and evidence-based guidelines, was resulting in many avoidable early deaths.
In the absence of established PAH patient care standards, Langland proposed a global, collaborative effort with Janssen’s PH team and members of the PH community to drive consensus on what people with PAH should expect from their care.
The result was the world’s first PAH Patient Charter: a concise and digestible resource, co-created with a steering committee (SC) of HCPs, nurses, PAGs and expert patients from nine countries. The Charter aimed to support and empower individual members of the PAH community to push for much-needed change.
Each partner demonstrated their commitment to the Charter, proactively disseminating it and supporting its launch. They continue to voluntarily host and share the Charter via their own channels.
As a globallyled project, a mark of the Charter’s success has been the extent of local uptake. Already translated into 11 languages, with 13 total PAG signatories, the Charter is used ‘on the ground’, to campaign for better funding and awareness.
The Patient Charter was executed very well, and the process showed that it was a result of real collaboration. It was fantastic to see such a high level of global engagement – it will be interesting to see what happens next.