Abstract
Patients’ access to electronic health records (EHRs) is debated worldwide, and access to psychiatry records is even more criticized. There is a nationwide service in Sweden which offers all citizens the opportunity to read their EHR, including clinical notes. This study aims to explore Swedish national and local policy regulations regarding patients’ access to their psychiatric notes and describe to what extent patients currently are offered access to them. The rationale behind the study is that current policies and current practices may differ between the 21 self-governing regions, although there is a national regulation. We gathered web-based information from policy documents and regulations from each region’s website. We also conducted key stakeholder interviews with respondents from the regions and cross-regional private care providers, using a qualitative approach. The results show that 17 of 21 regions share psychiatric notes with patients, where forensic psychiatric care was the most excluded psychiatric care setting. All private care providers reported that they mainly follow the regions’ guidelines. Our findings show that regional differences concerning sharing psychiatric notes persist, despite Swedish regulations and a national policy that stipulates equal care for everyone. The differences, however, appear to have decreased over time, and we report evidence that the regions are moving toward increased transparency for psychiatry patients.
Highlights
The use of secure web-based portals where patients can access and read their ElectronicHealth Record (EHR) is referred to as Patient Accessible Electronic Health Records (PAEHR).Internationally, implementation of PAEHR-services has become more widespread [1,2] but remains far from the norm
Open notes can be considered an essential part of any PAEHR
We identified the following categories: (1) which region and private care provider share psychiatric notes, (2) if notes are shared with outpatients and psychiatric notes, (2) if notes are shared with outpatients and inpatients, (3) if signed and unsigned notes are shared, (4) if the notes are shared with inpatients, (3) if signed and unsigned notes are shared, (4) if the notes are shared with immediate access or with a delay
Summary
The use of secure web-based portals where patients can access and read their ElectronicHealth Record (EHR) is referred to as Patient Accessible Electronic Health Records (PAEHR).Internationally, implementation of PAEHR-services has become more widespread [1,2] but remains far from the norm. The use of secure web-based portals where patients can access and read their Electronic. Health Record (EHR) is referred to as Patient Accessible Electronic Health Records (PAEHR). Implementation of PAEHR-services has become more widespread [1,2] but remains far from the norm. The phenomenon of sharing clinical notes or narrative visit reports with patients [3,4] is often referred to as ‘open notes’. Open notes can be considered an essential part of any PAEHR. For example, in Sweden [2], Norway [5], Finland [6], and Estonia [7], nationwide PAEHR services, including open notes, are offered to most adult citizens. In the United States, the OpenNotes movement was initiated in
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