Make a difference – driving change worldwide – the power of HAE TrackR and HAE Companion to improve patients’ lives

A short question-and-answer panel session focused on HAE TrackR and HAE Companion, two tools designed to put patients more in control of their condition and their lives.

HAEi Regional Patient Advocate (RPA) Maria Ferron asked questions of Natasha Jovanovska from HAE Macedonia, Ann Helen Hellevik from HAE Norway, Troyce Venturella from the US HAEA, and Estera Białek from HAE Poland.

Everyone on the panel had seen firsthand the value of HAE TrackR and HAE Companion for patients in their country. Natasha felt that HAE TrackR had significantly changed and improved the way HAE is managed and treated in North Macedonia. Home administration of medication is allowed in the country, but patients must return empty vials and record their attacks. HAE TrackR provides an excellent way to do this, and they recommend it to all patients. Additionally, a user can use the app to compile these records into a report that physicians can review with the patient to assess how well their HAE is managed. The data also provides an opportunity for them to advocate for medication changes, for example, starting prophylaxis medicine where the data shows a patient is suffering a lot of attacks.

Troyce shared Natasha’s endorsement of HAE TrackR, noting that it also offers medication reminders. If someone is experiencing many breakthrough attacks, patients can share this information with their clinician.

Having HAE TrackR with you at all times, because it’s on your phone, was another big plus for the panel. Natasha remembered how hard it used to be to remember attacks, which almost always happened away from the clinic. Now, it turns a conversation with your doctor into something practical and evidence-based rather than just vague recollections. Ann Helen suggested that when patients are having a good period, it can be easy to forget. With HAE TrackR, it’s possible to achieve genuine shared decision-making, which has been the subject of many discussions throughout the conference.

Patients who are well controlled can also benefit from HAEi’s apps, Troyce suggested. One of the first things patients want to do when their HAE is under control is to think about travel. HAE Companion provides details on all HAE resources in a country, enabling people to plan and feel confident when they travel.

Maria asked Estera how she encourages patients in Poland to use these apps. She said that the daily reminders and practical help are very welcome, but equally important is the security of every patient’s data. She felt that the level of data security offered by the HAEi apps is much higher than that found in many hospitals, and that only the patient can ever use the data in the app.

Estera told the MO leaders present that the HAE TrackR has helped patients to gain better control over their condition.

‘HAE TrackR increases safety, awareness, and the patient’s quality of life.’

– Estera Białek, HAE Poland