Every time we visit a hospital, we leave data behind: for example, blood values, computer tomography scans or even sequences of our genetic material. Such data is very valuable for scientists. They need them to understand diseases and to research therapies. The more data, the better the analysis. “We have been analysing patient data for decades,” said Christian Lovis, head physician in the Department of Medical Information Sciences at the University Hospitals of Geneva, in an article in the Freiburger Nachrichten. “Today, we have much more data than 20 years ago.”
The magic word of the day is Big Data. It means the process with which researchers can analyse immense amounts of data very quickly thanks to the latest algorithms. For example, researchers in Geneva want to use data to find out which part of the genome is responsible for the fact that blood coagulation drugs work very well in some people, but very poorly in others.
How well is health data actually protected? In Switzerland it is surprisingly bad. Health data does not always fall under the Data Protection Act. “You can do whatever you want with anonymous data in Switzerland,” says Bruno Baeriswyl, data protection officer of the Canton of Zurich, in the same article. Hospitals don’t even have to ask patients: if an ethics committee agrees, they can anonymise all non-genetic data such as laboratory values and use them for research.
The only problem is that today it is hardly possible to make health data anonymous. “You can identify people from actually anonymous data, for example by merging data records,” says Baeriswyl. A study carried out in 2013, for example, showed that only five blood glucose values or four cholesterol values were sufficient to identify a person unambiguously in a database, with laboratory results from a good 60,000 patients, says Christian Lovis. That is why data protector Baeriswyl is calling for new, better standards in data handling.For example: “Bank data is better protected in Switzerland than health data,” says Baeriswyl. One way out would be to encrypt patient data, r to protect them with an additional log on step using a second device – so-called two-factor authentication. This means that data is still secure even if unauthorized persons have access to databases.
Health data is becoming more and more desirable – Big data is big business.
About one million people have already sent their spit to Mountain View in Silicon Valley. For a supposedly low price, the company 23andme obtains the contained DNS from it and grants an insight into its genetic make-up – tempting service that provides information about disease risks and other hereditary traits. Today, 23andme has a market value of 1.5 billion dollars. By sending in their saliva samples, customers agree that their genetic data can be resold to research institutes or pharmaceutical companies, for example, leading to 23andme gaining such a large market value.
Suppliers of fitness or health apps can cash in by collecting and selling health-related data ranging from blood sugar levels to mobility and even details about diet and shopping habits. The flood of data has long since become a goldmine for companies like 23andme, founded by Anne Wojcicki, wife of Google founder Sergey Brin.
Since Apple introduced the iPhone operating system iOS 8 in 2014, all iPhones have been equipped with the so-called “HealthKit”, in which health-related data can be stored. By default in Germany only the steps are counted, but the app can store and analyze countless parameters from body weight to calorie quantity, blood sugar and blood pressure values to the menstrual calendar. The data can be entered, come from health or fitness apps on the iPhone or are transferred from devices connected to the smartphone such as AppleWatch, Wearables or other (measuring) devices.
Such a platform could become a gigantic revenue generator for the technology group. According to the technology magazine Wired, in Germany today 300 million euros are already spent annually on e-health applications such as fitness trackers, medical apps and telemedicine. This turnover is expected to double in the next three years.
Not only the big players are trying to boost sales with health data. Also in Darknet, masses of stolen patient stories, mostly from the USA, are offered again and again. The main customers are insurance companies. Although organised crime is behind this, examples show how sensitive and lucrative this data is. The question now arises of how individuals can control their health data today, store it securely, share it with selected individuals and institutions, conduct research and be rewarded for it. The answer is simple: healthbank.
Author: Roger Huber