Piloting and evaluation of a participatory patient-accessible electronic health record in Psychiatry and Somatics (PEPPPSY)

About open notes

Sharing of clinical notes and electronic health records goes back to a US research initiative called "OpenNotes" at Harvard University (Boston, USA). The purpose of sharing notes is to provide service users with access to personal health information and their individual case-related medical documentation. By using Electronic Health Records (EHR) and making them partially available via a secure web application, service user should be able to access the aforementioned information more easily.

In Germany, the right to inspect medical records is based on informational self-determination, which is enshrined in the Patients' Rights Act (§§ 630 A BGB FF). According to German law, inspection can only be denied if there is a risk of significant self harm to health.

About PEPPPSY

PEPPPSY is a project at the Center for Health Services Research at the Brandenburg Medical School (MHB; duration: 6/2021 - 12/2023). PEPPPSY stands for "Piloting and Evaluation of a Participatory Patient Record in Psychiatry and Somatics". PEPPSY is the first open notes pilot in German mental health care. At the University Outpatient Clinic for General Medicine at Witten/Herdecke University, another pilot has also already been implemented since 2019. PEPPPSY was and is being developed in collaboration with the Norwegian University of Technology and Natural Sciences (NTNU, Trondheim, Norway). PEPPPSY is also part of a working group at MHB that deals with issues related to the digitalization of mental health care (IAG Mental Health Policy & Digital Mental Health).

What makes the PEPPPSY pilot special is that it was developed based on participatory design. This means that service users* and health care professionals* had a concrete say in the functional scope and design of the pilot. PEPPPSY was and is being developed iteratively in several stages.

While PEPPPSY 1.0 could only be used at one clinic, PEPPPSY 2.0 can be used at several clinics. In addition, since version 2.0, users can comment on the open notes of staff members (e.g., physicians, nurses, psychologists). Finally, the current version also includes clinic-specific opening hours.

PEPPPSY is being tested at several hospitals as part of the current pilot phase (10/2022 - 12/2023). Included are the Clinic for Neurology and the Clinic for Psychiatry and Psychotherapy at Immanuel Klinik Rüdersdorf as well as the Clinic for Psychiatry Bremen East. While PEPPPSY 1.0 was developed and piloted in the partial inpatient psychiatric setting, PEPPPSY 2.0 is being tested in both the outpatient and inpatient settings of various departments and hospitals.

Research and evaluation

The aim of the study is to pilot open notes in psychiatric and somatic care. Within the framework of the accompanying research, users participating in the study will be asked about their expectations, opinions, perceived effects and hurdles in the implementation of open notes. Users include patients (here: service users) being treated in psychiatric, psychotherapeutic and somatic clinics as well as medical, psychological, therapeutic and nursing staff working in the participating institutions.

The study follows a participatory approach, i.e. feedback from service users and health care professionals on the conditions of use and the technical application is integrated into the development process of the web application in order to further develop and improve it.

Following a mixed methods approach, qualitative and quantitative methods will be combined during data collection at the participating clinics. In addition, a comprehensive survey of the attitudes, concerns, and suggestions of healthcare professionals in psychiatric and psychotherapeutic facilities on the topic of open notes is conducted in a nationwide online survey.

The results are expected to provide insights into users' opportunities, hurdles, and attitudes toward open notes. Factors for a successful implementation in Germany can be derived from the pilot phase. Thus, the study can contribute to strengthening the transparency in doctor-patient communication and the health literacy of patients.

The study is registered with the German Register of Clinical Studies (DRKS). Further details on the study design can be found on the DKRS Homepage.

How can I use PEPPPSY?

If you already have login credentials to PEPPPSY, click here to log in. If you have difficulties logging in, please send a message to info@pepppsy.de.

If you are a patient at Immanuel Klinik Rüdersdorf or Klinikum Bremen Ost, you may be able to use PEPPPSY. Please send us a message to info@pepppsy.de.

If you are a doctor or therapist and would like to offer open notes in your clinic or practice and use PEPPPSY for this purpose, please also contact info@pepppsy.de.

We are looking forward to your message!

Publications

Below you find an overview of the publications that have been produced so far in connection with open notes within PEPPPSY and the working group "Mental Health Policy & Digital Mental Health":

Schwarz, J., Bärkås, A., Hägglund, M., Blease, C., & Hochwarter, S. (2021). Sharing Clinical Notes and Electronic Health Records with People Affected by a Mental Health Condition: Scoping Review. JMIR Mental Health, 8(12). doi:10.2196/34170

Hochwarter, S., Fehler, G., Muente, C., Eisenmann, Y., Heinze, M., Hibsch, C., & Schwarz, J. (2022). Design of a Patient-Accessible Electronic Health Record System in Mental Health. In Challenges of Trustable AI and Added-Value on Health (pp. 583-584). IOS Press. doi:10.3233/SHTI220534

Gibson, M., Halvorsen, M., Joner, M. A. A., Lehne, M., Stautland, E. R., Svensson, G., Thevik, H., Fehler, G., & Hochwarter, S. (2022). Pilot Testing and Evaluation of Participatory Patient Record in Psychiatric Care. In Scandinavian Conference on Health Informatics, 216–217. doi:10.3384/ecp187039

Schwarz, J., Esch, T., Hötger, C., Heuser, I. (2022) [OpenNotes in Mental Health - Debate: Pro - Kontra]. Der Nervenarzt, 93. doi:10.1007/s00115-022-01357-4

Meier-Diedrich, E., Davidge, G., Hägglund, M., Kharko, A., Lyckblad, C., McMillan, B., ... & Schwarz, J. (2023). Dokumentationsveränderungen durch einen patientenseitigen Zugang zur elektronischen Patientenakte: Protokoll für ein Scoping Review und erste Ergebnisse. In 4. Brandenburger Kongress für Versorgungsforschung, Medizinische Hochschule Brandenburg. doi: 10.13140/RG.2.2.24793.49765

Meier-Diedrich, E., Davidge, G., Hägglund, M., Kharko, A., Lyckblad, C., McMillan, B., ... & Schwarz, J. Does Patient Access to Electronic Health Records Change Documentation? Protocol for a Scoping Review. In JMIR Res Protoc 2023;12:e46722. doi:10.2196/46722

Team and contact

Name Responsibility Contact
Dr. Julian Schwarz Project leadership and management julian.schwarz@mhb-fontane.de
Eva Meier-Diedrich Research Assistant, contact PEP.AGE-Studie eva.meier-diedrich@mhb-fontane.de
Justin Speck Student Assistant, software development justin.speck@mhb-fontane.de
Jonas Wördemann Doctoral candidate, medicine, student assistant jonas.woerdemann@mhb-fontane.de
Mareike Weibezahl Doctoral candidate, Doctor mareike.weibezahl@mhb-fontane.de
Prof. Dr. Martin Heinze Project responsibility
Associated researchers

Imprint

Dr. Julian Schwarz
Center for Health Services Research
Brandenburg Medical School
Seebad 82/83
15562 Rüdersdorf
GERMANY

Phone: 0176 22 65 26 28
Mail: julian.schwarz@mhb-fontane.de