In software design, involving end users in design and decision-making processes, so called participatory design, is sometimes referred to as “the Scandinavian approach.” This is because back in the 1970s, when computers were being introduced in the workplace, workers unions in different fields demanded a say in the design of their future “working tools.” I believe that this culture of public participation is one reason why the Nordic and Scandinavian countries have taken the lead in giving patients online access to their electronic health records (EHRs). It is a lead that we seek to maintain via the new NORDeHEALTH research project.
This three-year project was launched on 1 January 2021 with funding from NordForsk. It will draw together an in-depth analysis of current implementation of Patient Accessible Electronic Health Records (PAEHRs) in four countries; Sweden, Norway, Finland, and Estonia. Project partners are;
- Uppsala University, Örebro University, Skövde University, and Karlstad University (Sweden)
- Tallinn University of Technology (Estonia)
- Aalto University (Finland)
- Norwegian Centre for E-health Research (Norway)
- OpenNotes research group, Beth Israel Deaconess Medical Center (USA)
This joint project will increase the empirical evidence on how implementation of PAEHRs affects different patient groups and healthcare systems, and how best to evaluate and compare results across countries and different healthcare contexts. This is essential in order to use resources wisely, avoid failed implementations, and ensure that the benefits of digitalization reach as many patients, family caregivers, and healthcare professionals as possible. The results of this project will not only benefit the four countries involved. We hope that they will also inform and inspire the global digital health community as it moves to increase transparency on how health information is collected, shared, and used, and promote patient access to personal health information and data.
Within the project, we have identified a number of topics that we believe merit further exploration.
Contextual differences: A constant source of frustration for me when reading studies on success or failure of PAEHR implementations is the lack of detail provided on contextual or socio-technical factors that could have influenced the results. What regulations or policies were in place? Was access by patients automatic or did it require additional work from healthcare professionals? An interesting example the NORDeHEALTH project has found is that during the pandemic, access by patients to their EHRs in Sweden and Norway has increased massively, whereas in Finland it has decreased substantially. The explanation for this is not clear. Relevant actors may include whether people access covid-19 test results through their EHR, whether other care is cancelled via this means, and the level of covid-19 spread in the country.
Usability and adoption: Digital exclusion remains an important problem when discussing digitalization of healthcare. Are we reaching the people with the greatest needs? Are parts of the population excluded? In the project we will explore the connection between usability and adoption. Are there usability barriers to access that we can remove?
Transparency challenges: We have identified a few areas related to patients access to their records that are often debated and where best practice has yet to be established; (1) mental health, (2) shared decision making in oncology, and (3) parental, adolescent, and proxy access. Information security and privacy issues are essential aspects closely intertwined with the demands for transparency and control over health data. Regulation for parental and adolescent access vary widely in countries that give patients access to their EHR. So does policy for other types of proxy access. In Sweden, patients do not have the right to share their records with a proxy of their choice – whereas in other countries (e.g. the US and Norway), appointing a proxy is easy. In the NORDeHEALTH project we will explore these topics in more detail, especially focusing on the patient perspective in mental health and proxy access areas, the benefits and challenges of transparency, and recommendations for policy and practice.
Co-designing collaboration: Last, but definitely not least, we will also explore the future of online access to EHRs and the crucial shift from transparency to collaboration. So far, patient input to the record and use of the record as a collaborative tool to document information practice is not routine. In Sweden, patients have the option to comment on notes in their record, but in only one of 21 Swedish regions can the comments be shared with healthcare professionals. In the US, the Our Notes research study allows patients to suggest the agenda for an upcoming visit. So far these examples of collaboration and interaction remain far from mainstream practice. How can we design a socio-technical system that supports true collaboration and person-centered care?
We are on an exciting journey, and plan to continuously share our insights along the way. NORDeHEALTH is the first large-scale international study of transparency and patients’ online access to their records. It has potential to make an important and widespread impact on the future design and implementation of patients’ access to their health information and collaboration with healthcare.
Maria Hägglund, senior lecturer in Implementation Science at Uppsala MedTech Science & Innovation, and Keane OpenNotes Scholar and lecturer on Medicine at Harvard Medical School.
Competing interests: none declared.