This year, I am organizing a special track at the Computer-Based Medical Systems (CBMS) annual conference, together with four colleagues from the DOME consortium:
- Isto Huvila, Professor at the Department of ALM, Uppsala University, Sweden. [Researchgate][Twitter]
- Rose-Mharie Åhlfeldt, Associate professor at the School of Informatics, University of Skövde, Skövde, Sweden. [Researchgate][Twitter]
- Hanife Rexhepi, Ph.D. student at the School of Informatics, University of Skövde, Skövde, Sweden. [Researchgate][Twitter]
- Bridget Kane, Associate professor in Information Systems, Karlstad University, Karlstad, Sweden. [Researchgate][Twitter]
This is our special track introduction:
In an effort to help patients to become more informed, cope with their diagnosis, understand their disease process and increase their participation in healthcare decision making, there is an international movement towards providing patients with Patient Accessible Electronic Health Records (PAEHRs). Through these systems patients can often access medical notes, lab results, and track referrals. Probably two of the most widely known examples of PAEHR systems are OpenNotes in USA and myUHN Patient Portal in Canada. Other countries that use PAEHRs as components of their health delivery systems are Estonia, United Kingdom and several Nordic countries. The implementation of PAEHRs has apparent implications to both patients and healthcare professionals. When the Swedish PAEHR system Journalen was implemented in Uppsala County Council in 2012, healthcare professionals expressed strong concerns regarding e.g. that patients would begin to contact healthcare providers by telephone to ask about words and phrases they do not understand, or that patients would become anxious on learning about serious diagnoses when reading record notes. Physicians saw the medical records as their work tool and not a system for communication with patients. Similar opinions have been raised by healthcare professionals in other countries where similar systems have been implemented. There is relatively few studies on PAEHRs from the patient’s perspective, but the findings so far indicate positive attitudes towards the perceived usefulness of PAEHRs.
The organisers of this special track are all members of the Swedish national DOME (Development of Online Medical records and E-health services) consortium – a consortium focusing on research on PAEHRs from a multi-disciplinary perspective (human-computer interaction, health informatics, security and privacy, health information behaviour, to name a few). This special track aims at bringing researchers as well as patients together to discuss the latest research concerning the implementation and development of PAEHRs as well as research concerning experiences with and attitudes towards PAEHRs from the patient and professional perspectives. Since implementations often differ between countries and sometimes even within one country (e.g. as in Sweden), contributions comparing implementation of PAEHRs in different countries and contexts are especially welcome. Patient-focused researchers are encouraged to contribute with research papers highlighting patient perspective, including research on PAEHRs with a functionality that allows patients to add information to their medical records online. Reports of new initiatives related to PAEHRs are also of special interest.
See the 4th track on this page for more information about topics of interest and see the call for papers here. If you do (or have done) research related to patient accessible electronic health records you are more than welcome to submit a paper to our special track! Please note that the deadline for abstracts is 5/2 and the deadline for full papers is 19/2.