A Digital Safety Net for Women with Metastatic Breast Cancer

1. As a physician, what motivated you to take a new approach to supporting women with metastatic breast cancer through PRO B and, later, ida?

From an early stage, I was interested in how to communicate effectively with patients with serious illnesses and what kind of support they need. Through my studies and my work in the United States in the 1990s – I was in Seattle – I was able to see the positive impact of systematically collecting patients’ experiences and establishing a professional approach to doing so in the first place. These Patient-Reported Outcomes (PROs), as they were not yet called at the time, provided the care team with important information for treatment decisions and disease management.

With advanced or more serious illnesses in particular, it is also a matter of weighing up the options. Which treatment should we choose? Which therapy is the right one? Every therapy and every medical treatment has side effects, so it is always a question of determining what matters and what is right for the situation and for the person sitting in front of you. The more relevant information healthcare professionals have at their disposal, the better. Focusing on patients also helps them feel heard and taken seriously. For me, that is a central aspect.

Very early in my clinical work at the Charité Breast Center, I worked with colleagues and a large number of doctoral students to establish a programme for collecting Patient-Reported Outcomes as part of routine care. It became clear that an important component was missing: the continuous evaluation of this data. Since there is not enough time in everyday clinical practice to review every patient’s information individually and regularly, we needed technological support that could identify relevant changes and flag patients who required action. This led to the PRO B clinical study, which was funded by the Federal Joint Committee (G-BA) and provides the scientific basis for ida. Its technical implementation was made possible by the BIH Digital Health Accelerator.

2. Women with metastatic breast cancer often live with their disease for an extended period today. What does this mean for their day-to-day medical care, and where does conventional care reach its limits?

The situation is challenging for everyone involved, especially for the patients, but also for the care teams. The number of patients who need care is increasing. At the same time, new treatment options are regularly becoming available. Their side effects can be complex and are not always easy to recognise.

Many patients now take their medication at home or receive it by injection. As a result, we may not see them for several weeks at a time. Changes in their health can therefore go unnoticed more easily. This is also a concern for care teams: “Am I overlooking something? Have I missed something?” At the same time, studies show that healthcare professionals may underestimate patients’ symptoms.

Above all, however, patients need more support. They have to assess whether symptoms are unusual or potentially serious. They often do not know when to contact the clinic – or whom to contact there. That is why we need structured support that provides feedback and helps patients understand when something is likely to be harmless and when action is needed.

The PRO B study concept emerged from this situation. ida is the technical solution that puts this approach into practice in routine care.

3. ida regularly asks about symptoms, everyday life and emotional well-being. Why is it particularly important to systematically record these very personal experiences when dealing with such a challenging illness?

In oncology in particular, changes often develop gradually. Patients may become increasingly tired, have less energy and notice that they can no longer manage their everyday activities as they used to.

In medicine, we try to detect deterioration as early as possible using laboratory tests, imaging techniques and molecular markers. However, we also need to involve patients themselves more closely. They often notice months in advance that they are feeling worse, even though laboratory results and imaging still show no changes.

By recording how patients are feeling and, for example, how their physical functioning is developing, we gain a more complete picture. The voices of patients are an important part of medical care and need to be given more space within the healthcare system.

4. What can ida offer patients beyond medical treatment itself?

Many patients describe ida as a kind of safety net or “second line of defence”. They know that their information is regularly evaluated and that someone will take notice if their condition deteriorates.

The combination of technology and personal care is crucial. The algorithm identifies concerning changes, but it is then a member of the care team who contacts the patient – not a chatbot.

Patients receive feedback on how their condition is developing and what they can do about certain symptoms. The support provided depends on the severity of the symptoms. This strengthens their sense of self-efficacy and helps them remain independent in their everyday lives for as long as possible.

5. Looking back at the development of PRO B and ida, what do you hope for women with metastatic breast cancer in the future, and what still needs to change in healthcare?

I hope that further treatment options will become available so that patients can live with stable disease for as long as possible. They also need more structured support in their everyday lives. As treatment becomes increasingly personalised, explaining the different treatment options in an understandable way is becoming more complex.

Digital solutions such as ida should therefore be used as widely as possible in healthcare. They support not only patients but also care teams, enabling them to focus more effectively on those who are currently unwell.

One major challenge is making ida accessible to as many insured patients as possible. To achieve this, we still need to engage with more health insurance providers and establish the necessary contractual arrangements. The Federal Joint Committee (G-BA) has recommended that the care concept be incorporated into standard healthcare provision – demonstrating the high quality of the approach and its scientifically proven benefits. This is a major success for us and for ida.

My message to patients is: contact your health insurance provider and speak to your care team to find out whether ida is available. This can help make this patient-centred digital solution better known and more widely accessible.