Health data in research and care
no progress without access
In a joint study last year, SKC and the BDI examined what potential is still hidden in the development of digital health solutions and what obstacles to innovation currently exist in the health care system that prevent widespread use or already impede the development. The study concluded with a total of 13 recommendations for action and pointed out possible solutions for creating the conditions for digitalized oncological treatment from prevention to aftercare.
Out of our catalogue of recommendations, this event focused particularly on the importance of access to and utilization of health data. In his opening statement, Prof. Dieter Kempf, President of the Federation of German Industry, emphasized the necessity to speed up with the transfer of scientific results to application in health care. Furthermore, data access for the health industry is mandatory for the development of targeted and individualized therapies as well as an essential element in further strengthening Germany as an innovation driver for the latest technologies in health care. Subsequently, the results of the study were presented by Dr. Gabriel Harras, Executive Vice President & Head of Business Line Cancer Therapy at Siemens Healthineers AG, with a special focus on with data access achievable benefits for cancer patients. The results of the study were then discussed in two concluding discussion rounds with invited experts. All participants agreed that health data are becoming increasingly important and will be essential in all phases of care in the future. Similarly, health data are of outstanding importance for the development of new therapeutic approaches, and broad access by industry to health data from the field of care can significantly accelerate this development, Prof. Hagen Pfundner, Chairman of the BDI initiative: Gesundheit digital and member of the board of Roche Pharma AG, also confirmed.
A variety of benefits for the health care system are associated with the access to health data. However, even if these advantages are generally known, for the most people they are difficult to grasp which is also reinforced by the lack of practical use cases that demonstrate the achievable benefits. In the argument against data access, it is often enough to mention data protection as a critical issue to justify a refusal. But what types of health data are usually discussed in this context? Overall, health data are considered particularly sensitive because of the personal information they contain. Participants reaffirm here that the use of personal information is not the main focus and that it is essentially more a question of identifying patterns in anonymized or pseudonymized data than of analyzing separate personal data sets. Prof. Christiane Woopen, chairwoman of the European Ethics Council and co-spokeswoman of the Data Ethics Committee, proposes restrictions on the use of health data, as already applied in the German Genetic Diagnostics Act. These prohibitions on exploitation prevent the use of personal data to the detriment of patients and would thus create confidence.
On the other hand, the willingness to share health data for scientific purposes is constantly increasing and has reached a new peak, which Prof. Jörg Debatin, Chairman of the Health Innovation Hub, attributes to the circumstances of the Corona Pandemic. He underlines this with a present example from the Robert Koch Institute, which recently encouraged the public for data donations. In order to identify movement patterns and to record a regional incidence of Covid-19 diseases, the RKI wanted to acquire at least 100,000 data donations. Critics widely considered this to be impossible, but in reality, it turned out that more than 500,000 data donations were received within the first 72 hours. Due to the current pandemic and the broad understanding of the need and associated benefits, the willingness to share data was much higher than initially assumed. Dr. Matthias Suermondt, Vice President Public Affairs and Access at Sanofi-Aventis Germany added the interconnection of data pools which should not stop at national borders and calls for a European approach. However, he underlines that it is crucial to phrase the advantages of health data usage in a more transparent and tangible way in order to gain support from politicians and the public.
We hope that the jointly developed Digital Patient Journey Oncology will make a significant contribution to raising awareness of the benefits of digitization and data use in politics and the general public. Furthermore, the BDI has also produced short videos to summarize the advantages of digitization in the individual treatment phases. Unfortunately, the video clips are only available in German language: