Meet Nicola Cassidy from The Irish Lung Fibrosis Association (ILFA)
Hello! My name is Nicola and I am a Director of the Irish Lung Fibrosis Association (ILFA), the national patient organisation for patients and carers affected by lung fibrosis in Ireland. My mother, Denise, was diagnosed with idiopathic pulmonary fibrosis (IPF) at 56 years of age and I was her caregiver when her health deteriorated. I know first-hand about the daily struggles faced by patients living with IPF. I joined ILFA as a committee member in 2007 and have been involved with the patient organisation since then.
I met with patientMpower team two years ago to discuss the development of the phone app specifically designed for lung fibrosis patients. It was exciting to learn about the app’s potential to support and empower patients living with a chronic lung condition, with monitoring their health measurements.
Soon after the initial meeting, Eamonn and Colin of patientMpower attended the IPF Support Group in Dublin to meet with patients and see if they would be interested in trialling the app. The response was overwhelmingly positive and encouraging, and many enthusiastic patients signed up to participate in the pilot study. Advancing age was no barrier to patients wanting to learn more about this innovative and evolving technology. ILFA has since collaborated with patientMpower on a further successful and insightful usability study, and the results of the research have been presented at national and international conferences. ILFA was delighted to hear that patients in the USA are also using the app, and we look forward to learning more of their experiences.
The patientMpower app is appealing, functional, simple to use, convenient and efficient. It features educational videos (some produced by ILFA) that give patients information and insights on important topics including the benefits of exercise and managing breathlessness. Bluetooth integrated technology has facilitated the measurement of important clinical parameters, and the app facilitates the collation of contemporaneous, accurate and personalised data over time that can be organised into a report for patients to present to their clinicians. Health-related quality of life questions are also included so patients can monitor the impact of IPF on their lives. These features are especially important for patients, caregivers and clinicians given the progressive and unpredictable nature of IPF.
Patients are using the app with ease and confidence, and now are more knowledgeable of their health measurements. The app empowers patients to take control, monitor and manage their health, and seek additional medical advice when needed. The patientMpower app has provided valuable quantifiable data and health metrics for individuals, patient populations, and in the longer term it will have special relevance for the global IPF community. – Nicola Cassidy, ILFA Ireland Director
by Jennifer Bulandr