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PHA UK members have helped secure funding for an innovative new patient toolkit that aims to help people manage their PH via a convenient app.

Researchers from across the UK’s specialist centres submitted a bid to the British Heart Foundation (BHF) for a grant to develop the technology - and they used responses to our PHA UK surveys from the last few years as important evidence of its need.

Survey data from 1,653 people living with PH, who completed our surveys between 2021-24, was used as part of the funding bid. The £266,000 secured will be used to develop a mobile application for use by patients to track and manage their symptoms, learn more about the disease, and participate in research.

PHA UK members have already been involved in the early plans for the app, and there will be further opportunities to contribute when full development begins in the autumn.

Dr Frances Varian of the Sheffield Pulmonary Vascular Disease Unit is managing the project. She said: “PHA UK surveys were absolutely key to our funding success. Patient contribution through the PHA UK is so valuable for research, and it has a real impact on improving patient care for the future. It also helps us to really understand what is most important to those living with PH. We are excited to develop the app with patients to help support all people living with PH to manage their health.”

It is hoped the app will be fully developed by 2026, when it will then be used to support the NHS to deliver even better care.

Dr Iain Armstrong, Chair of the PHA UK, said: “If you have completed any of our surveys over the last few years, you have directly contributed to the success of this funding bid and the development of this toolkit. Never underestimate the impact of sharing your lived experiences in these ways, as this is further proof of the difference it makes.

“Getting involved in our survey and research activities not only helps our charity to support you in the most effective ways, but as this funding bid shows, it has many other outcomes too. In the past it has also helped secure access to new drug therapies, and this will continue to be important with new treatments on the horizon. Please continue to share your voices in this crucial way and be reassured of how grateful we are for your contributions.”

• If you would like to hear about opportunities to contribute to the development of content for this app, please sign up to the PHA UK Research Forum.