On 1 January 2021, the largest digitization project in the German healthcare system—the electronic patient health record (elektronische Patientenakte – ePA)—was launched after sixteen years of preparation. The aim of the ePA is to enable comprehensive digital connectivity within the German healthcare system, between patients and service providers, and between service providers in both hospital settings and primary care. The ePA is embedded in the so-called telematics infrastructure which is Germany’s digital backbone for sharing health data. Pharmacies, physiotherapists, ambulatory elderly care and other providers will be connected to the telematics infrastructure in the next few years.
Every person with statutory health insurance in Germany—around 90 percent of the population (10% are privately insured)—can now request their health insurers (so called sickness funds) to share their individual ePA app to which they, their health providers, and the sickness fund can upload data and documents. The ePA is a new central storage location from a patient’s perspective for all their data in the German healthcare system, which the 105 health sickness funds must make available to the people they insure. The ePA will be downloadable to smartphones and tablets and/or viewed in doctors practices and at sickness funds’ offices.
Through use of the ePA, it is envisaged that patients will become familiar with their own health data and take on a larger role in managing their own health. Patients should be able to get access to all their personal health data and documents through the ePA. That said, from a technical perspective, there is a way to go to make that happen: Over the next two years, the ePA will function like a dropbox for medical documents to which patients and their sickness funds can upload information and documents. From mid-2021, all primary care and specialist doctors practices will be connected to the infrastructure of the ePA and—at the patient’s request—will be able to upload medical documents. These will include clinical findings, lab results, medication schedules, and radiology and scan reports. Patients themselves will decide what they do or do not want to get uploaded and stored in their ePA and specifically request it, and what data can be uploaded is defined by law. Medical consultation notes are not currently included, although the formal letters doctors exchange are.
Patients’ interest in accessing their own health information is high. A recent survey of a representative sample of over 1000 adults conducted by the Bertelsmann Stiftung, a private, not for profit foundation, suggests around two thirds of the population in Germany would like to read their doctor’s notes online. Given this interest and the move to adopt an ePA one could argue that formal legislation on what can and can’t be uploaded is not needed. Rather than patients having to request their personal health information is uploaded; physicians should be able to routinely convert their notes and upload them alongside the formal letters they write, and all test results etc onto the patient’s ePA. Unfortunately, at present, this can’t happen for there is no easy way to ensure interoperability between the over 200 software systems which health providers currently use. Furthermore, software manufacturers will only include a function to integrate data if healthcare providers demand and pay for it; and currently providers show no signs of doing so.
As in other countries, there is still a great deal of scepticism among practising physicians and physician representatives in Germany about allowing patients to read their medical notes. In addition to the argument that the notes doctors write are primarily written for themselves and that writing them in a way which is accessible to patients too is time consuming, it’s fair to say that some health professionals do not think patients have the capacity to understand and play an active part in self management of their own health and medical conditions. Others may be concerned that full transparency may expose errors and omissions in the notes. It’s worth noting that more than 2500 patients each year go to Germany’s independent patient advisory (Unabhängige Patientenberatung Deutschland) seeking to enforce their right to inspect files.
The promise of Germany’s new digital initiative is considerable, but realising the full potential of the ePA depends on tackling both technical and cultural barriers. Unless this is done patient access to full personal electronic health records will continue to lag well behind Scandinavia, and the US and UK where the Open Notes initiative (www.opennotes.org) and progress on patients access to EHRs via PatientsKnowBest [www.patientsknowbest.com] is accelerating. Other countries experience and encouraging early evidence from qualitative research of a primary care “Open Notes” initiative set up in Witten Herdecke of the benefits to both patients and clinicians should help change medical mindsets in Germany.
Marion Grote-Westrick is Senior Project Manager at the Bertelsmann Stiftung, a private operating foundation. She leads the project “Patients with Impact” which works with cooperation partners for more patient empowerment and better physician-patient communication in German healthcare. Twitter: @marion_gw
Competing interests: none declared.