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“We will get to the point of self-learning medicine”“We will get to the point of self-learning medicine”
The corona pandemic has underlined the importance of networking and information exchange in medicine. The fact that vaccines against the pathogen could be developed in record time was not least due to the willingness to exchange data comprehensively between physicians, pharmacologists and officials in the health systems. Could we expect similar advances in other areas of medicine if the general conditions were similar?
Westphalen : I find it rather frightening that it took the corona pandemic to make such rapid and coordinated medical progress possible. After all, we still have to contend with a number of diseases that cost hundreds of thousands of lives every year - for example cancer with around 230,000 deaths annually in Germany alone.
In principle, we already had medical problem areas of a comparable extent before the pandemic. Accordingly, I would like that we would also approach other medical problems in a similar way to Corona.
Why did it take a pandemic to make such a development possible?
Westphalen : Maybe because Corona has literally hit everyone - be it as a sick person, as a friend or relative of an infected person or as a citizen who is affected by the official measures to contain the pandemic. This has massively promoted the willingness for comprehensive cooperation, for an all-hands-on-deck strategy.
Katja Janssen holds a doctorate in biology from the Heinrich Heine University in Düsseldorf and works as a Personalized Healthcare Implementation Lead at Roche Pharma AG.
(Photo: Roche)
As I said, I'm just amazed that we haven't managed to do this with other illnesses, such as cancer or cardiovascular diseases, which weigh heavily on people every year. In principle, the tools for this are available to us.
Does a certain fragmentation of health data in this country also play a role? Take oncology as an example: A large amount of medical data is collected here in the course of treatment, but it is often stored in fragments in many places. The effort is correspondingly high if you want to make this data usable in its entirety.
Janssen : That is one of several challenges we are currently facing. Another is that the data often doesn't speak the same language - that is, what stands for a certain blood value or a biomarker in one system can be called completely differently in another system.
Benedikt Westphalen received his doctorate from the University of Hamburg and is the medical director of precision oncology at the Comprehensive Cancer Center Munich LMU.
(Photo: Roche)
Then, of course, there is also the problem of completeness when different practices, hospitals or universities collect different data. This makes the combination of different data sets very complex. And last but not least, there must be a willingness to share such data with research-based pharmaceutical companies such as Roche, for example in order to accelerate the development of new active ingredients or diagnostics. Pilot projects, such as Roche is currently carrying out with the LMU, can help to promote this willingness.
You mentioned the pilot project by Roche and the LMU Munich, in which clinical-genomic data is collected, processed and made accessible in an anonymous form. How does that work in concrete terms?
Janssen : Through the cooperation with the LMU, as a research-based pharmaceutical company, we are learning exactly how data is collected in everyday medical practice, in what form it is available and what the quality of this data is. We learn at which points in the course of treatment important decisions are made and can derive from this how data must be processed in order to facilitate or improve these decision-making processes.
Behind this is the question of the benefit for the patient. In the Corona pandemic, the immediate benefit was easily recognizable. In other areas, such as cancer research, positive effects are often only tangible after years of research. So a certain leap of faith is required. Our cooperation should therefore also help to make clear the importance of joint systematic data analysis for medical progress and thus encourage people to share their health data.
Are there already first results of your cooperation?
Westphalen : Many people are concerned that their personal health data could be misused if they agree to it being passed on. Therefore, comprehensive anonymization of data is very important to us. Our IT has developed a procedure in which personal data can be securely anonymised without any medical data being lost. This may sound unspectacular to outsiders, but from an IT point of view it is a very important step forward and the basis for cooperation: we can securely share data and work together with it.
Janssen : I can only confirm that from our perspective. As part of the pilot project, the LMU only shares anonymous data with us, which does not allow any conclusions to be drawn about individuals. At the same time, we can work with the medical data and develop new research approaches.
So would that be a way to counter the reservations many people have about sharing their health data?
Janssen : Definitely. At the same time, as a research-based company, we have to make greater efforts to make it clear to people the direct benefits our work has for them. The example of fitness trackers or health apps shows that something like this promotes willingness: These devices and programs also collect vital data and share them with the providers. The immediate benefit is that the user receives an evaluation and recommendations for action for his training or his diet. Last but not least, in our cooperation with the LMU, we are looking for ways to make the benefits of our research work similarly tangible for the individual.
Data protection is very important in this country. This does not make the collection and processing of patient data any easier. Would you like some relief here?
Westphalen : Clear answer: No! Every person has the individual right to decide for themselves how their medical data is passed on and processed. And if he or she doesn't want to do that, then you have to accept that.
Our task as physicians and researchers is to make transparent why we want to collect and share this data and what exactly happens to it. If we do that and if we make it clear what benefits there is in passing on and evaluating this data, we can certainly convince many people.
So it's not so much a privacy issue as a communication issue. It is not the legislature that is called upon here, but rather we physicians and scientists.
What do you expect for the future - for example when the pilot project by Roche and LMU catches on?
Westphalen : If we manage to collect data in a structured way and make it usable together, we will come to the point of self-learning medicine. Then we can generate insights from medical practice that ultimately benefit our actions as physicians. And they don't even have to be new high-tech drugs. Even a definitive answer to the question "Can I treat a woman just as well as a man with this therapy?" is a significant gain in knowledge.
Janssen : We are hoping for better availability of medical data, a step in the direction of "research-based care", as Mr. Westphalen has already described. The experience and knowledge of the medical community should no longer gather dust in fragmented data silos, but should be used systematically to improve the quality of care. In short: better care for more patients through more effective use of data – that would be my wish.
