Germans support personalized medicine with willingness to share data

Dusseldorf, February 5, 2018

Individualized cancer treatment offers the patient the best chances of success. But personalized cancer medicine requires large volumes of medical data from everyone to learn from. Despite being rooted in a culture where data protection is crucial, Germans are very willing to share their patient data in the interests of research even if they aren’t a cancer patient themselves. A survey of 1,000 German citizens, conducted by PwC and Strategy&, demonstrates eight out of ten people would be willing to do so. Michael Burkhart, Head of Healthcare & Pharma at PwC Deutschland, and Dr. Thomas Solbach, Pharma and Health expert at Strategy& Germany, explain their interpretation of the findings in this interview.

Eight out of ten Germans would share their patient data if they could make a contribution to cancer research by doing so. Were you surprised by this result?

Michael Burkhart: The level of support for it certainly surprised me. After all, the “data protection” issue withstands fierce criticism in Germany. But we can also see that the fear of cancer is widespread. Germans fear cancer more than cardiovascular diseases such as a stroke or a heart attack, even though more people in Germany die from them than from cancer. For that reason, interest in cancer research is correspondingly high as is the willingness to contribute personally to science, even when sharing personal data. But people also want to be sure that data protection will still be guaranteed. And they would only be willing to share their data with a trustworthy institution – preferably with academic research institutions such as universities.

How justified is the hope that citizens have? What progress is currently being made in cancer medicine?

Dr. Thomas Solbach: Massive progress. Cancer diagnostics and treatments are set to fundamentally change in the next three to five years by our estimation. In the future, there will be an even greater emphasis than now on using targeted diagnostic procedures such as genetic sequencing of tumor tissue and blood and reliable data analyses to adapt the treatment to the patient individually. The keyword for this is personalized or customized cancer medicine, combining knowledge of the disease with new diagnostic possibilities and individual patient data. In the future, therefore, it is conceivable that we will see fewer “off-the-peg” drugs (i.e. large and elaborate clinical trials on hundreds to thousands of patients with development times of around ten years) and more “customized” treatments (i.e. testing new molecules or drug combinations using innovative diagnostic procedures). However, this is predicated on a fundamental change of thinking in drug development, licensing and production – a change that needs to be worked out and happen amongst all healthcare stakeholders.

Why does personalized cancer medicine offer such massive potential?

Burkhart: It has been long known in cancer research that the disease progresses in various different ways, and not every patient responds straightaway to a given treatment. If the healthcare sector succeeds in building up large data inventories (and people are willing to assist in that, as our study shows), cancer patients can be treated in a much more targeted fashion in the future. The chances of successful treatment increase dramatically, and the risks of undesirable side effects reduce if the treatment is adapted individually to the patient. This holds true not only at the start of the treatment but also throughout it. Additionally, it helps in avoiding sufferers having to undergo an onerous therapy to which they may not respond.

Modern cancer research and treatment comes at a price. To what extent are citizens prepared to accept the high costs?

Dr. Solbach: Acceptance is at very high levels, as our study shows: around six in every ten Germans consider the costs of modern drug-based cancer treatment which can quickly mount up to EUR 50,000 and more per patient as justified – particularly if there is a demonstrable benefit from it. Conversely, around a quarter consider the price of cancer drugs to be inflated, regardless of the benefits they bring. Cost awareness has increased, including in the healthcare sector. But professionals/those in the industry/doctors/healthcare providers know that personalized medicine does not necessarily make drugs more expensive. In fact, it can contribute to lowering costs in healthcare. Our 2017 Strategy& survey has shown that pharma companies worldwide anticipate a reduction in development costs for drugs by around 17 percent, or EUR 26 billion annually, as a result of personalized medicine.

How willing are citizens to give donations for cancer research?

Burkhart: On this point, Germans are less forthcoming. Only a little under a third would be willing to support cancer medicine financially through donations. Citizens are more inclined to consider taking part in studies (67 percent said they would do so), or helping research by sharing personal, anonymized data (64 percent).