In Germany, patients’ rights to access their health information has been enshrined in the Civil Code since February 2013. The right to “inspect medical records” in § 630 g states “The patient is on request to be permitted to inspect the complete medical records concerning him/her without delay to the extent that there are no considerable therapeutic grounds or third party rights at stake to warrant objections to inspection. The patient can also request electronic duplicates of the medical records.”
Germany is therefore theoretically well placed to follow the OpenNotes movement started at Harvard Medical School which has now spread across the US to provide more than 50 million patients online access via patient portals to their clinicians’ notes in the electronic health record (EHR). Sharing the medical record with patients will shortly be mandatory by US law.
Research has shown that sharing medical notes can improve communication between patients and clinicians, build trust, improve the quality and safety of care, and increase adherence to medications. There is also evidence that it improves people’s understanding of health information, helps build better relationships with doctors, and promotes confidence and ability to self-care.
In Germany, full sharing of clinical notes is rare and so, after my experience as a member of the original US OpenNotes team, I decided to set up a pilot project at the University of Witten/Herdecke. This was launched in early 2019 at the new university outpatient clinic for integrative healthcare (also referred to as “primary care plus”).
The core of this project is the so-called three-legged stool of “resource-oriented medicine” which consists of drug therapy, medical interventions (the two conventional legs of treatment), complemented by a third, which is improvement in self-help and self-management.
The primary care clinic we run at the University is part of the statutory health insurance system, and is a unique model in Germany. Teamwork is key and four primary care physicians and four medical practice assistants, and case managers who act as patient guides and clinical assistants, in addition to cadres of other health professionals who advise and support self-management, represent the multidisciplinary team. The patient is regarded as a key member of this team and plays an active role in their own care.
The staff at this primary care facility share all treatment reports with patients as well as the notes taken during interactions with them. This information sharing is done face to face during the appointment, as well as afterwards via the patient portal. Patients can review and download a digital copy of their notes through the portal—online, any time and from any location. In addition, patients automatically receive an email notification as soon as new entries are added to their file. They can also add their own documents. These documents can be anything they want to share, as long as it can be uploaded and, for example, converted into a PDF document and saved. Physicians are then notified of such additions through the practice management system.
As of March 2020, roughly 1000 patients (around 40% of the entire panel) have signed up to participate in the programme for sharing notes. First evaluations, after more than 12 months of experience, confirm the positive findings seen in other countries. Improved communication and better relationships between clinicians, practice staff, and patients are frequently reported. Patients say that the ability to easily see their medical record and record information in it helps them prepare for consultations, including what questions to ask and adjustments to suggest, or which life-style changes they want to pursue. Some have reported that through enhanced understanding of their conditions they no longer consult the internet for health information. Being able to review visit notes enhances their confidence in the physician, and this remains true even if they discover errors in their notes which can then be corrected. Previous studies on OpenNotes have shown, especially for the chronically ill and regular users, that practically all had discovered errors in their documentation.
We are evaluating this initiative carefully. Every three months patients who come to us consecutively in the selected period—except those who come to us for the very first time and those who have already been there in the same month—fill out a quantitative questionnaire. In addition to selected/self-reported medical outcomes, we primarily ask about satisfaction, quality of life, stress perception, aspects of health, life-style, and health promotion—and views about reading the consultation notes. The questionnaires can be filled out online and/or in paper form, and anonymously, and we have found response rates vary from 95% to 35%.
Survey results suggest that almost all patients welcome being able to see their own health information and being encouraged and supported to be actively involved in the management of their own health. They also report how they value closer interaction with the health professionals they see. Our analyses of the surveys handed out for self-reported measures on health-related quality of life, or perception of stress, support these findings with strong improvements becoming evident.
Feedback from medical staff has also been positive. They report that sharing the records with patients leads them to consider more carefully how they describe a visit to the clinic. They also report that transparency of the record results in a flattening of the hierarchy between them and their patients and helps them “activate” people to play a larger role in their healthcare. Patients who frequently read their notes are most adept at this and we observe that they are also better prepared for appointments.
Inevitably, we have faced some challenges. Finding technical solutions was a problem. The chosen patient portal still needs to be optimised—it is a prototype (patient portals are not common in Germany). There is also a “culture gap,” for in Germany the skepticism towards digital health in the general population is widespread.
Some doctors are concerned that full sharing of all health information and data may fuel the rate of medical liability issues. Others that the adoption of a new technology will disrupt their workflows. Against the background of the European General Data Protection Regulation, clinicians also worry that they could be sued for what they have documented.
So far, this fear is purely theoretical. It is important to state, however, that regardless of the legal context and patients’ right to access their files, our approach at the University’s Primary Health Care Service is based on clinicians voluntarily making their notes available to patients.
Plans are underway to extend the Witten Model to cover a network of local primary care practices in the region. In the future, we seek to make notes bi-directional and move to an interactive model, where patients can check, comment, and add their own content to their records. We are also pioneering an animated version of “Open Notes” where a short video clip is recorded at the end of a visit, in which the patient summarizes the consultation, in their own words. This video can later be viewed by both the practice team and the patient from home, and reviewed prior to the next visit to the clinic.
We believe that OpenNotes and integrative healthcare, with patients playing an active role in their care, based on transparent communication, is the future for primary care in Germany. There is a long way to go but The Witten Model has attracted interest among health professionals, patients and citizens, and politicians, both in and outside the region. We are also increasingly been invited to talk at cross-regional, federal, and national congresses and host on-site visits, although these have been curtailed by the covid 19 pandemic.
However, despite these positive responses we are aware that skepticism remains a central problem, especially among medical colleagues: We are still the first and only institution in Germany that has fully and visibly committed itself to this innovative approach to primary care delivery.
Tobias Esch, Director, Institute for Integrative Health Care and Health Promotion, Faculty of Health/School of Medicine, Witten/Herdecke University (UWH).
Competing interests: none declared.