PACESS, or patient-centred assessment of patients’ online access to electronic health records, is a 3 year research project starting in 2017. The project is finansed by FORTE and researchers from Karolinska Institutet and Örebro University are running the study.

In Sweden, we are now in a unique position to explore how current eHealth trends can impact on, and even transform healthcare. In this research, we specifically want to explore the impact of patient accessible electronic health records (EHRs) on the areas of health- and self-care, and further explore how eHealth can be used to empower patients to become active participants in both their own care and the transformation of healthcare. Patient accessible EHRs (PAEHRs) are often heralded as important means for patient empowerment – but we aim to further explore if and how this empowerment
takes place. One hypothesis is that only patients who are already empowered use the service, leaving other patients without the potential benefits. Therefore we will explore the benefit of having online access to EHRs and how the design and use of these eHealth services can be improved to empower more people.

In order to harness the powers of eHealth, we need a better understanding of how roles, relationships and organizational structures are affected on micro, meso, and macro levels through the introduction of such eHealth services. We also need to understand how the emergence of e-patients affects other roles and impacts on the transformation of healthcare. Therefore the main objective of this research is to explore the impact of information access and innovative eHealth on patients and healthcare.

2 work packages are planned;

1. long-term evaluation of the already implemented eHealth services in Swedish healthcare, and
2. co-creation of innovative e-services that empower citizens.

Throughout the project we will establish a theoretical framework to explain how implementation of eHealth services impact different patient groups and healthcare on different levels of the health system. Furthermore, patient-centered quality indicators will be created to facilitate joint assessments of deployment and use of PAEHRs.

Project leader: Maria Hägglund, Karolinska Institutet

Collaborating researchers: Isabella Scandurra, Örebro University

PUBLICATIONS

Hägglund, M., DesRoches C., Petersen C., Scandurra I. (2019) Patients’ access to health records. Editorial the BMJ, October 2019.

Bärkås A, Scandurra I, Hägglund M. (2019) Analysis of Voluntary User Feedback of the Swedish National PAEHR Service.  Studies in Health Technology and Informatics 264: 1126-1130.

Moll J, Rexhepi H, Cajander Å, Grünloh C, Huvila I, Hägglund M, Myreteg G, Scandurra I, Åhlfeldt RM.  (2018). Patients’ experiences of accessing their electronic health records: National patient survey in Sweden. J Med Internet Res 2018;20(11):e278

Hägglund M, Moll J, Åhlfeldt R, Scandurra I. Timing It Right – Patients’ Online Access to Their Record Notes in Sweden. Stud Health Technol Inform. 2018;247():336-340

Hägglund, M., Scandurra, I., (2017) A Socio-Technical Analysis of Patient Accessible Electronic Health Records. Stud Health Technol Inform. 2017;244:3-7.
PMID: 29039366

Hägglund, M., Scandurra, I. (2017) Patients’ Online Access to Electronic Health Records: Current Status and Experiences from the Implementation in Sweden. Stud Health Technol Inform. 2017;245:723-727.PMID:29295193