A pilot study by Health Innovation Hub Ireland (HIHI) has found that a patient app designed for people with cystic fibrosis (CF) delivers significant benefits in terms of patient empowerment and reduced stress.

The I Know Me app allows patients and their carers to record and track symptoms, key clinical metrics, vaccines, nutrition, physiotherapy, treatments and diagnostic test results. These reports can then be shared with a patient’s clinical team if and when required.

It can also capture data regarding what happened during a medical appointment and aims to give individuals more control over their personal health data.

HIHI conducted a pilot of the I Know Me app with 15 CF patients and carers in Ireland. The results showed that 93 per cent of participants found the app useful for memory recall, with 67 per cent stating that it was very or extremely useful for recall of medical history.

Additionally, 60 per cent agreed or strongly agreed that using the app helped reduce stress levels around medical appointments (60%) and 67 per cent agreed or strongly agreed that using the app gave them a real sense of empowerment.

The vast majority of respondents found the app easy to navigate (93%) and easy to use (86%). More than two-thirds used the app on a weekly or monthly basis.

The I Know Me app was developed by Michael Twomey, senior clinical research manager at Health Innovation Hub Ireland who also happens to be living with CF himself. He was motivated to create the app after the death of his sister Jane, who died from CF in 1997.

Based on his own experience as a patient, Dr Twomey sought to solve a problem faced by fellow CF patients and carers: the challenge of recalling important medical information at medical appointments.

CF is a genetic disease which affects the lungs and digestive system. It is caused by mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene which leads to the production of a thick sticky mucus in the lungs. It can also affect other organs.

There is no cure and patients require a lifetime of treatment, including mucolytics, antibiotics, pancreatic enzyme and CFTR modulators. There are often repeated hospital admissions and frequent appointments with doctors, nurses, physiotherapists, occupational therapists and other care providers.

Dr Twomey was concerned about providing accurate information to his own clinicians and decided to do something about it. First he created a paper-based checklist booklet for CF patients and their carers. Incorporating what he learned from that project, he designed and developed the I Know Me app, with the help of fellow CF patients and caregivers.

I Know Me is an app for CF patients and caregivers designed by patients and carers, and that’s why it works, Dr Twomey said.

“It allows us to track our medications, our symptoms more effectively, our own unique health journeys, with the data captured available to us as required. We are empowered in the management of our own health and need to be. After all, we need to be the CEOs of our own bodies.”

Dr Twomey said he was delighted by the progress shown in the trial. “The insights gained from the pilot have been invaluable and will really aid our advancement of the I Know Me app,” he said. “Still more work to be done. I hope my sister would be proud of what we have done so far.”