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We are more connected today than we’ve ever been before. Private information and personal data reached new levels and we are now also in the need of “data security” and “privacy policies” that we did not have ever before in history. Are You asking yourself what all this has to do with healthcare? Easy:

USA and Europe

In the USA companies that are trading personal data back and forth are making a fortune. Your personal data is a private good for businesses and they monetize on it. We Europeans are still a little bit more hesitant regarding that matter. Data privacy puts much more constraints on companies over here than in the US. Question: is this a good thing or a bad thing? In the healthcare sector it can actually be more than beneficial, you could even say life-saving, to have big data pools. Now: is it egoistic to put your own right to privacy above someone else’s need to use your personal data to potentially save a life, or is the risk of data abuse too high? Surely a question to ponder about…

What do you do if you have two extremes?

As with almost everything else, the answer can often be found in the grey area between those extremes. There is data privacy á la Germany where the private person is getting the protection and attention and companies need to find their way through the difficulties of data privacy law. Christoph Franz from Roche has an opinion: in Germany, private companies should be granted more access to specific data centers that are currently excluded for the private sector. If Europe wants to be a leader in the progression of digital health we need to be able to work with the data that is there!

We do not need total liberalism with everyone having all rights over everyone else’s data. But we need to shift our political decision making from empowering the private individual more and more while restricting the “evil” companies that are “selling and mis-using” your private data towards easier pathways for the private sector to operate in the digital world of big data.

Real-world example: while Denmark wants healthcare companies to have access to anonymized patient data for the development of personalized medicine, Germany is not granting companies this access. Every patient needs to allow companies to use their data – even if the data is anonymized. Too much regulation?

This is what Big Players think

Christoph Frank, the Chairman of the Board of Directors at Roche, gave an insightful interview to the German “Handelsblatt” about the value of patient-insight data and real-world-evidence.

  1. Personalized Medicine is already there – Roche is using individual tailored medication that works only for certain patients in the treatment of breast cancer. For more tailor-made solutions patient-insight data can provide great help for research and development.
  2. Roche is investing more than €10bn per year into R&D for medication – money that gets deployed to mainly evaluate data.
  3. 96% of all patients are providing data in daily treatments – if granted access, this could be a valuable asset for pharma for medication R&D.
  4. Companies already exist that are digitalizing patient records in the US (by simply scanning them) and with the approval of the patients is giving this data to 3rd parties like all big pharma companies world-wide. Not rocket-science but a very valuable business model.
  5. Every move towards a digital patient record is another step towards the accessibility of highly relevant data for pharma and insurance companies – and eventually also for patients that benefit from tailor-made solutions based on the data of millions of others.

Why Roche acquired Flatiron Health

Big pharma has every incentive to get more patient-insight data. Flatiron is the company that is scanning the patient records mentioned above – they basically took the initiative and are building their own digital patient record after the state didn’t manage to implement it yet. With the data of Flatiron, Roche managed to simulate clinical studies that usually require real patient surveys with placebo medication – surveys that are not very popular under patients since they do not know if they are getting a treatment for their condition or not. Would you sign up? It is very costly for pharma to initiate such clinical trials. With simulations based on real world data this makes it a lot easier.

Flatiron closed its Series-C round with Roche in between 5 other investors with a total of $175m in 2018.

XO Life: the leading platform for patient-insights in Germany

We want to sum up this post by highlighting the fact that Aescuvest is currently giving the chance to invest in XO Life, a Munich-based start-up that is focused on real-world-evidence data for healthcare stakeholders. With their platform they are collecting valuable patient data while also offering their user the benefits of getting insights on how the greater sum of people react to medication that one is about to take. The start-up is rising up through the ranks. Consider being a part of the next Flatiron Health!

Visit XO Life