How can 4 million patients, some of whom have very specific illnesses and live all over Germany, be provided with the care they need?
Dr. Maike Stein, one of the developers of MyaLink, was asked this question by our partner Qurasoft GmbH. The scientist and neurologist also gave an assessment of the current care of rare diseases.
How did the idea for MyaLink come about?
Dr. Stein: "The idea came about while working in the special outpatient clinic at Charité Berlin. Many of our myasthenia patients - some of whom have to travel several hundred kilometers to come to us - have told us time and again that they have no real contact person for their condition in their home country. At the same time, we don't have the capacity on the medical side to meet patients' needs. Waiting times of several months for an appointment are the rule.
In view of this gap in care, we said to ourselves: we can do better! We believe that everyone with a rare disease should have access to a specialist!"
What is your experience with the platform?
Dr. Stein: "We are currently evaluating a pilot study that we conducted with 45 patients aged 23 to 83. The patient app was actually very well received by all age groups - we can see that from the data and that was also the feedback we received from the patients.
From a treatment perspective, we can see that the simple digital communication with patients in the chat allows us to clarify many queries promptly and in line with their needs without the need for face-to-face appointments. Nevertheless, it goes without saying that the app should not replace personal contact, but rather supplement it.
From a medical point of view, our aim is to use MyaLink to save patients from the intensive care unit by quickly recognizing deterioration and intervening in good time. Telemonitoring of vital signs such as pulse, forced vital capacity and respiratory rate provides the ideal conditions for this."
How important is the technical component?
Dr. Stein: "With a telemedicine application like MyaLink, we are to a certain extent breaking new ground in the field of rare diseases. It was important to us that MyaLink is tailored as closely as possible to the needs of patients.
We need a strong partner at our side with whom we can work very closely and trustingly. Qurasoft's technical support is simply worth its weight in gold for us at this point, because we are happy to draw on their expertise and vast experience in the areas of IT, development, regulatory affairs, and so on. For us, this is the perfect complement to our clinical expertise in the field of rare diseases.
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