>> In addition to Thomas Kleine (Country Lead Pfizer Digital Germany), Friedrich-Wilhelm Leverkus (Director Health Technology Assessment & Outcomes Research, Pfizer Pharma), Dr. Alexander Schachinger (founder and managing director, EPatient Analytics), Prof. Dr. rer. nat. Michael Krawczak (Director at the Institute for Medical Informatics and Statistics at the Christian–Albrechts University in Kiel), Paul Burggraf (co-founder and managing director of Thryve) and Simone Pareigis (head of the self-help group for leukemia and lymphoma patients in Halle and initiator of the WEGA ePatient file).
“The focus of the debate is on the aspects of data security and data protection, which has just been made clear again by the example of the e-prescription,” said Kleine, pointing out current events that led to the Westphalia-Lippe Association of Statutory Health Insurance Physicians (KVWL) adopting the e-prescription -Rollout has been suspended for the time being. The previous
This was a decision by the Federal Commissioner for Data Protection and Freedom of Information, who rejected the use of the electronic health card (eGK) when transferring the e-prescription.
“The question of how to handle the future use of health data has a public good aspect,” says Kleine, astonished by the process. He explains this by saying that it must be clear to everyone that the great potential of health data for science and research can only be fully exploited if as much data as possible from healthy and sick people is networked, compared and evaluated. Kleine: “If we made all of our data available under the rules of data protection, we would all benefit from it, because without data there is no medical progress.” That is why we urgently need to talk about how the public good aspect can be brought more into the public discussion can be introduced. To achieve this, Kleine continues, it is necessary to promote “understanding and trust equally”, because “these two elements are absolutely central and essential for the motivation of the individual”.
“Health data drives research and innovation forward,” added Leverkus. A lot of data would be generated everywhere along the patient journey, starting with prevention through wearables, screening, diagnostics, therapy & aftercare right up to billing with health insurance companies. According to Leverkus, health services research hopes that as much data as possible will be available in the ePA, which will result in a completely different data quality and a completely new set of data with which completely new statements can be made. He demonstrated this using the example of atrial fibrillation. Using health insurance data, Pfizer was able to identify risk factors for atrial fibrillation and develop an algorithm that can calculate the probability for each individual patient of whether they may develop atrial fibrillation. Although no examination values, laboratory parameters or biomarkers are included in billing data, a screening tool was developed for atrial fibrillation in order to enable “data-based medical action” with such a screening tool. The tool can now be implemented in doctor information software so that the doctor can always be alerted at the point of care when a specific patient needs further information.
gnose would be appropriate: data sharing could save lives and improve health.”
After these two keynote speeches and another from Schachinger, who presented selected results of his company's last self-tracking report (June 2022), Krawczak, Burggraf and Pareigis discussed above all one, if not the most important point of data availability via data donation: consent. Quite different perspectives came together. While Pareigis took the position that “the most important thing for us as patients” is that “we remain masters of our own data,” Burggraf pointed out that consent can be made “very fluid” once you do that created the necessary trust because, in his experience, hardly any participants would make use of the opportunity. Krawczak, on the other hand, countered that it would not be possible in practice for patients to “decide according to their taste who
what can and cannot be done with your data.” It will not be possible to set up a data infrastructure for research if the power to dispose of the data is delegated elsewhere. It makes more sense to create data governance that allows sensible science to be carried out with it, but which also takes into account the interests of those affected. For this purpose, there should be representatives of patient interests, similar to ethics committees. <<
by: MVF editor-in-chief Peter Stegmaier