Pharmaceutical companies are increasingly relying on personalized medicine. More and more highly sensitive patient data should be available digitally. A development with dark sides.
Geneva (dpa) - Paint a round 8 on the smartphone screen or put characters and numbers together as quickly as possible - that sounds like a nice gimmick, but the Floodlight app from the Swiss pharmaceutical company Roche is primarily intended to feed the researchers with data.
Data from multiple sclerosis patients. The app counts pace and pace, and patients upload information about their condition.
It is still only for clinical trial participants, but that is about to change. Data is the new gold in the pharmaceutical industry. "They will be the central driver for changes and innovations in the pharmaceutical industry in the coming years," said Roche President Christoph Franz.
The pharmaceutical industry relies heavily on personalized medicine or precision medicine. On the one hand, this is something like the million-dollar gene therapy for terminally ill babies, which the pharmaceutical company Novartis is giving away just 100 times. Or the Kymriah gene therapy for aggressive leukemia. The drugs are manufactured individually for each patient.
But it also means a development that should revolutionize the treatment of all patients. Medium A for high blood pressure, Medium B for heart failure: The fact that patients with the same illness usually receive the same pills should soon be a thing of the past. The pharmaceutical industry needs a lot of patient data for this.
They should come from studies, apps and medical practices. Physicians are increasingly capturing information in an electronic patient record on the computer instead of on the index card. "We can expect an explosion of data in the next few years," says Anne-Marie Martin, head of precision medicine at Novartis.
This includes findings, X-ray and MRI images, laboratory analyzes, studies and also the good old doctor's talk - simply everything that is available about everyone's health. The analysis of mass data can reveal connections that were previously unknown. Certain gene or cell characteristics, but also age, weight, a previous medical condition, other medications, place of residence, ethnicity or the time of taking can influence whether a drug works or not.
But what about data protection? Patients are worried that health insurance companies might one day ask for a risk premium for an investment in diabetes in the genome. Even the planned introduction of the electronic patient file on January 1, 2021 is problematic, the Association of Statutory Health Insurance Dentists in Bavaria just warned. Practices are not adequately protected against hacker attacks, and € 2,000 are offered for patient files.
The pharmaceutical companies say they are concerned with anonymized data so that patients cannot be identified. Experts for IT security, data protection, artificial intelligence and medicine are currently working on behalf of the Federal Ministry of Research to develop a standard for the secure processing of medical data.
"If you analyze such data, treatments can be offered that are tailored to the patient," says Roche spokesman Daniel Grotzky. Martin von Novartis says: "On the one hand, we can filter out the patients for whom a certain treatment is particularly effective, on the other hand, the data also feed the engine of discovery." In this way, new drugs could be developed for patients who do not respond to conventional therapy.
In oncology, it is often already common to determine cell receptors and, depending on the result, to treat two women with breast cancer differently. Martin says that great progress can also be expected in diseases of the central nervous system, such as multiple sclerosis (MS).
In Alzheimer's research, Roche has developed a test that can measure a protein that could be responsible for the death of nerve cells. If the substance can be measured reliably and there is an Alzheimer's drug at some point, patients could be treated before the first signs. The company is also testing rice-grain implants in the eyes of patients with retinal diseases that can lead to blindness. It is checked whether the individual, optimal dosage of the active ingredient brings better results for patients.
Data, data, data: Novartis already brings patient information from studies together in a database so that information from more than two million patients can be digitally analyzed. Roche has bought Flatiron Health, a US company specializing in cancer patient data, and Foundation Medicine, which creates genetic profiles.
Personalized medicine is considered a win-win-win. Patients benefit because they are treated effectively more quickly. Health insurance companies save money because expensive medications that do not help are not tried out unnecessarily for patients. And pharmaceutical companies can negotiate better prices with greater accuracy. "If you can prove the success of treatment with the patient, the value of remuneration by the healthcare system becomes clearer," says Roche spokesman Grotzky.
Finland is the gold standard for health data usage. Patient data has been recorded electronically there for years. In the "FinnGen" project, the genome is decrypted by half a million Finns - in order to find the benefit of all disease patterns.
Foundation Medicine
Flatiron Health
Roche on personalized medicine
Novartis on cell and gene therapy
WEF Foundation for Personalized Medicine
Swiss pharmaceutical association Interpharma on personalized medicine
Federal Ministry of Research on data security
Association of Statutory Health Insurance Physicians for data protection
