There are two main Long COVID apps in use in German-speaking Switzerland: INSELhealth Cofit from Inselspital Bern and Long COVID Tagebuch (Long Covid Diary) from Patient Strength. An international alternative with similar functions is the English Bearable app (see links to these apps at the end of this article). This article introduces the two Swiss apps in closer detail.
What does me good? What doesn’t?
One function is the same across all these apps: documenting the user's health. The very name “Long COVID Diary” gives this away. This app was launched by Tobias Grossmann, who himself suffers from Long COVID. “We long-haulers have wondered over and over again what was up with us. And we worked out fairly early on that certain things, such as alcohol or sugar, over several days, don’t do us any good, worsening or triggering symptoms. Histamines also play a big part in our well-being.” This realization gave rise to the idea of developing an app that would allow people to record factors just like these and to recognize connections and progression.
The idea for the app is simple: users keep records and find out what does them good and what doesn’t.
Data belongs to the patient
Several affected people were directly involved in the development of the app. Screenshots were shared on the Long COVID Switzerland Facebook group, with the aim of gathering and implementing feedback. Today, you can use the app to record daily symptoms, food intake, current physical wellbeing and activities. The plan is to make the app suitable for sports watches and also to record medication, if the budget stretches far enough.
Because he has himself worked in data protection, Grossmann knew from day one that users’ data must not be saved, belonging instead to the user alone. “It would be inappropriate from an ethical perspective to use people’s health details to make money,” he explains. However, the data can be exported in the form of a table in .csv format, and then shared with a doctor or therapist. “This is extremely valuable, because it enables the doctor to follow the development of the condition more easily, and no time is wasted,” adds Grossmann.
This is how the Long COVID Diary app is likely to look in future. (Photo: Tobias Grossmann)
The three-pillar principle: documentation, activity and information
As with Grossmann’s app, the INSELhealth Cofit app does not require registration. Apart from the diary function, the app rests on two further “pillars”: activity and information. Joachim Schmidt, head of Respiratory Physiotherapy at Inselspital, explains: “The activity area of the app is designed in a way that each user is first screened to find out whether they are affected by PEM (Post-Exertional Malaise), also known as PESE (post-exertional symptom exacerbation). If so, then the exercises that would normally be recommended are not even shown in the app, as a precaution.”
However, if there are no signs of PEM, the user is encouraged to try a one minute Sit-to-Stand test (STST). The result can be used to divide patients into three groups according to the severity of their condition, and exercises are offered with the corresponding levels of intensity. This means that the app can be used by the user, even without the support of a medical professional. However, if PEM symptoms are present, the advice of a professional must be sought.
“The INSELhealth Cofit app can be used independently, without relying on a therapist or doctor.”
Therapists in focus too
The third area in the app is information. This is mainly intended to provide the user with helpful information on their illness and behavioral strategies. “This is where we occasionally point people towards Altea,” says Schmidt.
In contrast to Long Covid Diary, the Inselspital app focuses not only on those affected, but also on therapists. Many different disciplines and professions were involved in the development of the Cofit app. Schmidt explains: “We were able to benefit from our experience setting up the hospital’s existing apps, and put together the exercises from the archive.”
He adds: “Long COVID is new for us physiotherapists too, and there is still a lot of uncertainty about how to treat it.” The app offers a certain structure for treatment, contains a range of exercises that can be suggested to patients, and provides further information and points of contact within Inselspital.
“Although the diagnosis of Long COVID is always the same, each patient experiences it differently.”
Every Long COVID patient is different
Joachim Schmidt points out that the app is not suitable for all patients: “As a therapist you have to be watchful, and only use the app where it makes sense to do so. Sometimes you might only focus on the documentation side of it, for example.”
Feedback about the app also varies widely. While some people love its versatility, others find it too much of a struggle to find their way around it. This is typical with Long COVID. “Although all these patients are given the same diagnosis, you have to reinvent the wheel every time, so to speak,” the physiotherapist explains.
The user numbers show that the apps are a welcome resource. Grossmann has noticed a significant increase in downloads since January. The app is currently downloaded by 2,000 people. Inselspital has registered 900 downloads to date.
Show
