NORDeHEALTH

NORDeHEALTH aimed to implement patients' online access to their electronic health records (PAEHR) and increase self-management and transparency in healthcare. The goal was to enable further digitalization of the public healthcare sector by providing concrete feedback to national authorities in respective countries and offering guidelines and frameworks for the design, implementation, and evaluation of personal eHealth services (PeHS).

More specifically, NORDeHEALTH aimed to:

• Study the current implementation and use of PeHS in the Nordic countries to generate new knowledge and a deeper understanding of the challenges and opportunities.
• Develop evidence-based evaluation frameworks and guidelines to help researchers and practitioners within and beyond the Nordic countries to evaluate PeHS and their acceptability, and support the successful implementation and use of PeHS.
• Explore factors related to co-creation of PeHS through innovation projects focused on patient-generated data and tools for patients’ co-creation of their medical records, while providing best practice guidelines.

Personal eHealth, patient empowerment, and self-management are topics that receive significant international attention, and substantial resources are dedicated to the design, development, and implementation of such services globally. Yet, we still do not have a clear picture of how contextual factors (e.g., technical infrastructure, healthcare organization, reimbursement models, and population characteristics) affect implementation or how to account for these factors when implementing.

The project gathered experiences and knowledge from studying PeHS and patients' access to their medical records in the Nordic countries, with partners from Sweden, Norway, Finland, and Estonia, as well as in the United States (through a partnership with the OpenNotes research group). This joint effort increased the empirical evidence and established a theoretical framework to explain how PeHS implementation impacts different patient groups and healthcare, and how we can best evaluate and compare results across contexts.

This is crucial for using our resources wisely and avoiding failed implementations, but also for ensuring that the benefits of digitalization reach as many patients, family caregivers, and healthcare professionals as possible.

PI of the project: Maria Hägglund