Dedicated new app launched to support people living with rare disease, Pulmonary Arterial Hypertension to improve health outcomes and quality of life

Johnson & Johnson Innovative Medicine, Science Foundation Ireland (SFI) CONNECT Centre for Future Networks & Communications, Maynooth University and Mater Misericordiae University Hospital partner to deliver bespoke app enabling better management of rare condition – Pulmonary Arterial Hypertension

Johnson & Johnson Innovative Medicine, SFI CONNECT Centre for Future Networks & Communications (CONNECT), Maynooth University and Mater Misericordiae University Hospital announced a new partnership today to introduce an innovative health app.  This application has been specifically developed using award-winning technology deployed by many UK-based hospitals and is designed to provide essential tools and information for patients living with pulmonary arterial hypertension (PAH), supporting improved health outcomes and quality of life right from their homes. The app also enables medical teams to educate patients about their condition and encourages proactive health management.

PAH is a rare form of pulmonary hypertension, which is high blood pressure in the lungs with an annual incidence rate of 3.11 patients per million of the total population of Ireland.^[i] Symptoms of PAH include: breathlessness, particularly during physical activity; fatigue; dizziness; syncope (fainting or passing out); peripheral oedema (swelling to lower legs or hands) and chest pain.^[ii] These symptoms can severely impact a patient’s ability to carry out normal daily activities.^[iii] As the disease progresses, some patients may experience constant dyspnoea (shortness of breath or breathlessness) and fatigue so that even simple tasks, such as getting dressed and walking short distances, become difficult which can severely impact a patient’s quality of life.³

The Mater Hospital is the National Centre of Excellence for PAH and is attended by patients from across Ireland. The initial rollout of the app will benefit up to 250 people living with the rare disease who attend the Mater Misericordiae University Hospital for treatment, empowering them to manage their disease more effectively, from their homes.

The app’s integration into the patients’ care routine is expected to:

• Improve the quality of life of patients, empowering them to self-manage elements of their condition through access to credible and localised information about the management of their condition, their treatment pathways and online support services.
• Improve medication adherence by providing patients with medication support and education.
• Reduce hospital appointments by providing patients with self-management information and the use of a health tracker to enable patient-initiated reviews. This would positively impact patients who are not located close to the hospital, to reduce the burden of travel, parking and support from loved ones.
• Provide holistic guidance and education to patients on their emotional, physical and nutritional wellbeing with the aim of improving their quality of life.
• Improve the quality of care through personalised, up-to-date medical advice from trusted clinical teams as well as deploying remote education for healthcare professionals through the app.
• Enhance the experience of healthcare professionals by streamlining patient interactions and reducing administrative burdens, creating greater efficiencies that benefit both the professionals, and the patient.

This partnership brings together the expertise and resources of Johnson & Johnson Innovative Medicine, formerly known as Janssen, alongside Maynooth University, CONNECT and the Mater Misericordiae University Hospital to offer innovative support for patients. It underscores the commitment of both public, private and academic sectors to enhance patient care, improve quality of life, and address the increasing demands on the Irish healthcare system, serving as a national pathway personalised to local clinical and system needs. A presentation about the new app will be made today at the International Digital Health Summer School 2024, hosted at the Innovation Value Institute, Maynooth University.

Developed by Health and Care Innovations (HCI), the CONNECTPlus app has been designed in collaboration with nurses, clinicians and PAH patients, to ensure it closely supports the local pathways of care, patient needs and challenges faced by people living with PAH which will be optimised over time to incorporate user feedback.

Speaking about the partnership, Lisa Wallace, Business Unit Director and Head of Business Transformation at Johnson & Johnson Innovative Medicine said, “This partnership aims to not only support patients living with pulmonary arterial hypertension, but also reduce the demand on a busy health system, improving the quality of care and supporting the clinician’s engagement with patients. We are living in a world where the demand for healthcare is increasing, and we need to shift to innovative ways of working where more patients are at the centre of personalised care that is delivered closer to home.”

Martin Curley, Professor of Innovation at Maynooth University and Digital Health Lead at Innovation Value Institute and CONNECT Investigator said, “Digital transformation has emerged as a vital catalyst in optimising clinical pathways for both patients and healthcare professionals. By embracing technology, we are unlocking new opportunities for seamless collaboration, efficient data management, and personalised healthcare experiences. This initiative is a great opportunity to empower patients as well as healthcare providers with the tools and insights needed to deliver timely and effective care, ultimately transforming the way we navigate and improve patient outcomes.”

Prof Sean Gaine, Consultant Respiratory Physician at the Mater Misericordiae Hospital said: “Our teams are actively involved in shaping this innovative app to ensure the technology will best suit the needs of our patients and support our goal of empowering people living with PAH to play an active role in the management of their disease. We are delighted to deliver this new innovation to help patients better manage their condition.”

[i] Cullivan S, Lennon D, Meghani S, et al. Incidence and outcomes of pulmonary hypertension in Ireland. BMJ Open Resp Res 2022;9:e001272. doi:10.1136/bmjresp-2022-001272

[ii] European Heart Journal (2022) 00, 1–114. Available at: https://doi.org/10.1093/eurheartj/ehac237 [Last accessed June 2024]

[iii] PHA Europe (2012). The impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers: results from an international survey. Available at: https://www.phaeurope.org/wp-content/uploads/PAH_Survey_FINAL.pdf [Last accessed June 2024]

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