Is this cooperation also a way to improve patient compliance, i.e. the correct use of the prescribed therapy?

Thomas Praska: This is a very important aspect. Because a huge chunk of the entire patient costs is generated by the incorrect use of prescribed medicine. This is a very complex question that unfortunately cannot be solved by an alert on a smartphone. Such as when chemotherapy is interrupted for the summer so that the patient can recover his or her vitality. Because oncologists know that the success of the treatment also depends heavily on achieving a positive mental health in patients. But this interruption can also have side effects. And this requires very complex considerations in which the exchange and experience of other patients and their relatives play a major role.

These difficult considerations also relate, for example, to the question of the form of administration. For many patients and relatives, receiving regular infusions in a clinic is a source of stress. They would therefore find a different form of administration a great benefit. But unfortunately, a gentle form of administration is usually less effective than an infusion. In such borderline cases, it is a matter of generating knowledge and understanding in order to design an optimal form of therapy and also to keep an eye on the reimbursement framework so that the therapies also remain financially viable.

For all of this, you need as comprehensive a data basis as possible and that not only contains clinical data but also enables a differentiated view of the use of the therapeutics and the context of this use.

Joachim Stengel: The more serious the diagnosis – especially of chronic diseases – the more important it is to optimally integrate the therapy into the patient's life model, to understand which emotional phases they go through, how willing they are to intensively engage with treatment and to actively use the therapy. The exchange with other patients can be very helpful. And the insights that emerge in such communities can help the pharmaceutical industry to develop valuable therapy-supporting measures in which digitalization plays a leading role. A good example of this is digital tools that complement blood sugar monitoring devices and make it easier to regularly measure, collect, transmit and analyze readings, helping patients to use their therapy more effectively and manage their daily lives better.

What does this mean for the direct interaction with the patient?

Thomas Praska: For pharmaceutical companies, the effective administration of therapies with the greatest possible benefit for the patient forms the core of their identity. But for decades, industry's contribution was limited to the development of therapies and the technical optimization of their use. Access to the patients' living environments was difficult because there were hardly any direct points of contact. On the one hand, this was due to a lack of opportunities for interaction and, on the other, to relatively rigid structures and roles in the healthcare system. This meant there was no connection to the "last mile” in the therapy process, which, however, is essential to the success of the treatment.

In the last ten or fifteen years, pharmaceutical manufacturers have therefore increasingly worked on forming mini-ecosystems around patients, particularly in the case of chronic diseases, and building this missing link. This can be illustrated by the example of a nurse service for MS diseases, which is already very well established in some countries. When a patient is to be started on a drug for the first time, she can register for a free nurse service. She is then contacted by a nurse, who works with the manufacturer and schedules a personal appointment. At this appointment, the nurse explains to the patient how and where to administer the drug correctly and painlessly, what to do in an emergency and how to prepare for travel. She/he answers individual questions and may also leave a cooling device for the drug.

With such gentle approaches, with partners, you can build an ecosystem around the patients. Digitalization opens up enormously exciting opportunities to expand such systems, to network with communities, to raise interaction to another level.

Joachim Stengel: Interaction with patients and patient communities enables manufacturers to achieve a better understanding of patients and to focus even more strongly on patient benefit. In larger pharmaceutical companies, we are seeing more and more frequently that dedicated units dealing with the topic of patient engagement and patient partnership are being set up. These patient partnership managers also have the necessary cultural skills. They then determine, on the basis of governance, which channels are to be kept open and how communication can be structured. This requires a very high level of sensitivity because these are not communities that are formed around hobbies.

Is further development of this highly structured system at all realistic?

Joachim Stengel: I strongly believe in the ability of the healthcare system to change – even if the change is slow and does not occur without external stimulation. A paradigm shift toward a focus on treatment success is crucial. Some national healthcare systems have already initiated this change. If maintaining health rather than treating disease becomes the guiding principle – then change will also be possible. And under these organizing principles, the role of patients and patient communities will also become significantly more important because prevention is closely tied to everyday-life and psychological aspects, on which peer groups have a very positive impact.

If patient benefit and prevention are established as the new guiding principles of healthcare – won't this also create conditions for new strong players to enter the ecosystem?

Thomas Praska: If the major technology companies achieve a breakthrough in the direction of prevention and patient care, the coordinates will change. It will be exciting to see how Google Health, for example, develops. BigTech could directly leverage their communities, their data knowledge and their competences in building ecosystems. Because patients are highly likely to be willing to make their data available for diagnosis and prevention. Which in turn can lead to a significant strengthening of the patient community in the overall system. You are only strong if you have the opportunity to take responsibility. And patients can take responsibility especially on the prevention side.

Don't the legal requirements surrounding data use and data protection work against this development?

Thomas Praska: In this context, it is essential to avoid polarization and engage in a broad and open dialog. It goes without saying that careful and rule-based handling of patient data is important. Otherwise, there will be no mutual trust in the system. At the same time, however, we have to accept that data-based innovations are not born from rules governing their use, but from the use itself. And if this use becomes so restrictive and complicated that is no longer possible to define a business case, the last mile will remain out of reach. This is certainly not in the interest of the patients and society, which needs to make its healthcare sustainable and future-proof .