The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources.
The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof Jaysunthar J Balian and patient association representatives Eva Otter Melanie Gallant-Dewavrin Natalia Maeva Pisana Ferrari Elizabeth Joseloff and Jamie Myrah
These included advocacy resources targeted towards specific and specialised audiences (policymakers, health system decision-makers, cardiologists, pulmonologists and rheumatologists) that aim to raise awareness of pulmonary hypertension and pulmonary arterial hypertension to ensure early diagnosis and optimal care. These resources provide information such as definitions, signs and symptoms, as well as highlighting key diagnostic tools and the services people living with the conditions need.
A policy toolkit was also developed to support pulmonary arterial hypertension advocates in instigating policy change, equipping them with key information to present to decision-makers. Consensus from the Steering Committee was used to identify critical opportunities for decision-makers to leverage, outlining the policy actions needed to improve the lives of people with PAH. The toolkit can also be used to educate a wider, non-specialist audience; it sets out why PAH is a significant issue, major system challenges and the optimal patient journey.
Both the policy toolkit and advocacy resources were launched at the PHA EUROPE Annual Pulmonary Hypertension European Conference (APHEC) in November 2024 in Barcelona, Spain. The Health Policy Partnership held a session titled ‘Engaging decision-makers for a better future for PAH: learnings from a new policy toolkit’.
The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof Jaysunthar J Balian and patient association representatives Eva Otter Melanie Gallant-Dewavrin Natalia Maeva Pisana Ferrari Elizabeth Joseloff and Jamie Myrah
Read more about this initiative at this link
The policy toolkit is available in pdf format here
