How patients become pilots of their illness

“Patients need to know what the data is for, what the data means for them personally and of course for other patients,” said Univ.-Prof. Dr. med. Tjalf Ziemssen, Director of the Center for Clinical Neurosciences and Deputy Clinical Director of the Clinic and Polyclinic for Neurology at the Center for Clinical Neurosciences of the Neurological University Hospital Dresden at the Roche Pharma DKVF symposium with the title “Use of data for its own sake or for the benefit of the patient? " out of. Until now, according to Ziemssen, it has often been the case that attempts have been made to obtain more and more data from patients in order to conduct research and thus introduce innovations, but this usually happens without the patient having any direct benefit or being able to understand it what the data means for him personally. As a negative example, Ziemssen cited the electronic patient file, which does not have a structure that the patient cannot handle well surgically. Things are different with the concept of the “digital twin” that he propagates (see interview on page 22 ff).

>> A digital copy of a patient manages to present patient-specific data in a comprehensible form in such a way that the patient can understand it and, on top of that, derive impulses for action from it. Ziemssen: “The patient must be the focus and have a say in shaping their data collection. But he also has to understand what the data means to him personally and how to make decisions with it." His petition: "In research, including in health services research, we have seen that data is analyzed, but that there is no direct benefit for patients have of it. We will only progress to the next step if both sides benefit, but especially the individual treatment of the patient.”
PD Dr. med. Benjamin Friedrich, co-founder and chief medical officer of the Munich IT company Temedica, develops apps like those used by Ziemssen. “The future of health needs real insights” is the company’s credo, which says that it operates “Europe’s leading ecosystem for real-world insights in the health sector” with over 1 billion data points that are already available and linked “Overcoming data silos and combining anonymized health data to provide all stakeholders in the healthcare system with a comprehensive understanding of patients.” Friedrich led the symposium
that digital solutions make it possible to measure the longitudinal progression of the disease in patients. But there must always be feedback in a validated way. Friedrich: “Whenever patients enter their data, it is reflected back to them.” This would allow patients to observe their individual disease progression and gradually learn what influencing factors such as smoking, exercise, obesity, diet, etc. actually have an impact on the course of your illness. Patients could also approach the treatment team with this information in order to change, modify or intensify the treatment.
Nele Handwerker, an influencer, blogger and “patient advocate” in the field of multiple sclerosis, explained what exactly that means with her online portal and podcast series “MS-Perspektive” (1). She describes her self-imposed mission on her homepage: “To educate other MS sufferers about the disease and the possibilities of influencing its course so that they can live self-determined, free and happy lives. It is best to do so right from the time of diagnosis in order to maintain long-term health as best as possible.
She does this very personally with her own “digital twin”, because it is run by Prof. Dr. Tjalf Ziemssen and his team in Dresden looked after. According to Nele Handwerker, she had her “first attack” over 20 years ago, which is what you call it when you realize that you have MS. Initially, she kept quiet about her illness out of fear of stigmatization and also to avoid being patronized, but then she changed her mind and founded the podcast “MS-Perspektive” in 2020 - there are now 215 episodes online and the most listened to MS podcast in the German language Space. Like her, around 280,000 people in Germany are currently affected, of which 72% are women and 28% are men. The age of diagnosis is typically between 20 and 40 years. The MS population is therefore very young and uses health apps to deal with their disease. The new diagnosis rate is around 14,600 per year. Although the prevalence would continue to rise for quite some time, it no longer led to a shortened life expectancy. The reason: There are currently around 20 course-modifying drugs that would manage to slow down the disease or, in the best case, stop it, but there is still no cure. Nevertheless, there is always a progressive course of the disease,
At this point, Nele Handwerker took a symbolic step back and asked rhetorically: “What does this mean for me and for all the other patients?” On the one hand: fear. Secondly: uncertainty, combined with the questions: “What does this mean for my future? “What can I do for a living?”; “Can I venture into investments?”, “Can I have children?”, “Will my partner stay with me?”, “Can I find someone new if I’m not yet in a relationship?”
According to the blogger, all of these fears can be alleviated to some extent through digital data, because “as patients, we want to lead a normal life and be influenced as little as possible by the respective illness.” This is exactly what we need “reliable prognoses with individualized treatment options” based on patient data. This is the only way to understand and implement recommendations for action, such as quitting smoking, exercising more and eating a healthy diet. Craftsman: “If I do more exercise and eat healthily, I can make a positive contribution to a better prognosis.” The digital copy also helps the doctor. Because he should treat a patient “not based on gut feeling”, but based on facts.
She has also been taking part in non-drug studies in Dresden for years in which her brain volume and jumping strength are analyzed, but in the meantime she has been using her MS app, in which she enters self-collected data via her own tracking on a weekly, sometimes daily basis. Also those that come from tests that can be used to detect any gradual progression. Because, says Handwerker, “if it exists, you have to intervene, whether that means a new treatment concept, a change in medication, more physiotherapy or whatever.” However, it is not enough to wait for the next doctor's appointment, which only takes place a few times a year. “I go to the doctor four times a year, which is quite often, but there is a black box in between.” But the more data points are linked in your digital twin, the better you can estimate which events happen by chance or are directly related to the disease are really relevant to you. Such as smoking: “If I smoke, the probability increases that I will develop MS progression eight years earlier and thus possibly develop a disability that is irreversible.” However, such connections would not be revealed by individual routine examinations, but only in the Linking as much data as possible becomes visible. “That's exactly why I use the app with all my personal digital data, so that I can optimize how I deal with the disease, a healthy lifestyle, interactions with various lifestyle factors and my treatment.” In principle, it's about using such instruments and toolkits for patients : inside the “pilots of their illness” because “we decide on it together with our practitioners as co-pilots”, they are the experts, but “still it is my life”.
Of course, she also shares all of her data in a cohort to help others: “I want to contribute to science.” Because she has a daughter and if she ever gets a diagnosis like she did – whether MS or another autoimmune disease – she should “ not starting from scratch like I did, but on a completely different level” so that I don’t have to worry about so many fears and worries. <<