My last blog post was about a forthcoming presentation about the effect of patient accessible electronic health records (PAEHRs), at Medical Informatics Europe. This post is about the second full paper that was accepted to the same conference. The main author of that paper is Maria Hägglund and I’m a co-author together with Rose-Mharie Åhlfeldt and Isabella Scandurra. The title of this paper is “Timing it right – patients’ online access to their record notes in Sweden”.
This second paper also focuses on patient accessible electronic health records, but from a different angle: waiting times before new information (e.g. notes from a doctor’s visit or lab results) is accessible through Journalen. There are numerous differences between the implementation of Journalen in different county councils. For example, different types of information is accessible in different county councils. When Journalen was introduced in Region Uppsala in 2012 the patients could get access to almost all types of information (visit notes, diagnoses, lab results, log list, referral tracking, vaccinations, care contact history,…) except radiology images, pathology results and psychiatry records. This is still the case for those who have received care in that region. Those who have received care in Region Skåne (the second county countil in Sweden to implement Journalen), however, can only see visit notes, diagnoses and care contact history.
Two other big differences can be seen when it comes to when information is accessible in Journalen and if patients can access unsigned information (results and notes which the physician has not yet validated). Currently, the applied rules differ between county councils in Sweden:
- Immediate access to signed notes (17/20) county councils)
- Immediate access to unsigned notes (7/20 county councils) – in this case the patient decides if s(he) wants direct access to unsigned notes or not.
- No access to unsigned notes (1/20 county councils)
- Access to signed notes after a waiting period of 14 days (3/20 county councils)
- Access to unsigned notes after 14 days (12/20 county councils)
In the paper we show which rules are applied by the different county councils and discuss the rules and their implications more thoroughly. We also discuss the different implementations in relation to some of the results from the national patient survey in Sweden regarding general attitudes towards Journalen and expectations on waiting times.
Here is the abstract:
In Sweden, and internationally, there is an ongoing debate about the effects of national implementations of Patient Accessible Electronic Health Records (PAEHRs). The purpose of this paper was to describe the current situation in Sweden and compare this with the expectations on reasonable waiting time for information access of users of the Swedish PAEHR. Data were collected from publicly available resources regarding current implementation in the 21 county councils, contrasted with patient experiences, gathered from a national online survey. The results indicate that patients have high expectations on immediate access to information, while this varies greatly in implementation across Sweden.