Health Data and medical research

First, information is obtained in clinical studies. These studies are used to research the effectiveness of new drugs but are only conducted over a limited period of time and with a small number of patients. In fact, only around 4% of all data comes from such studies. The majority of information is generated in daily routine medical care.

Access to this Health Data can provide us with valuable insights into the entire spectrum of medical care. We can develop better diagnostic methods, understand why certain people have an increased risk of certain diseases and better assess the effectiveness of medicines. This can also contribute to the development of new drugs. In epidemiology, access to Health Data enables a better understanding of disease patterns and how they spread, as well as early signs of disease. This leads to improvements in medical care. Valuable knowledge can also be gained about lifestyles such as eating habits, which can contribute to health promotion.

To summarize: Sharing helps cure. By sharing my data, I support better medical care and the development of new medicines, which benefits the entire population – and ultimately myself.

When pseudonymizing data, we remove personal information such as address, telephone number and name. These are all replaced by random numbers, making it difficult to identify the person behind the data. In addition to pseudonymization, we use other methods of anonymization, such as grouping by age, to increase the protection of personal data. For scientists, it is irrelevant who exactly is behind the data, they only need the totality of the information to make medical progress.

Although one hundred percent protection against data misuse is not possible, we do everything we can to ensure the greatest possible protection. This is done through technical measures such as IT systems and databases as well as encryption and anonymization procedures.

At Roche, our internal departments are responsible for data processing. They set up databases, encrypt and analyze the data and control access to it. Only a defined group of people have access to the data, which is strictly controlled. No one outside this group has access to the data. Health authorities such as the FDA can request access to the pseudonymized data as part of the approval process for new drugs in order to check patient safety and the quality of the data.

All of them. There is no project where more data would not lead to better results. However, the quality of the data is also crucial, only then can we trust the results obtained from the data.

Astrid Kiermaier has been working for Hoffmann-La Roche for more than 20 years. She holds a doctorate in molecular biology and completed her studies and doctoral thesis in Germany at the Universities of Münster, Marburg and Heidelberg as well as at Cornell Weill Medical College in the USA. She began her career in clinical research, primarily in the field of oncology. Later, Astrid Kiermaier turned to personalized medicine and led research projects in the field of biomarker and companion diagnostics development, which also led to several approvals.

Currently, Astrid leads programs dedicated to secondary data use. This includes projects to establish a suitable data infrastructure, to ensure data protection, to generate datasets for research projects, and to share data with other scientists.

As part of these activities, Astrid is also involved in numerous international consortia and manages public-private partnerships.