Dear Editor,
Sweden’s “Journalen” 10 year anniversary of patient access to records conference Uppsala 9th and 10th November 2022 celebrated the 10th anniversary of patient access to records in Sweden.
Medical ethical standards for sharing records with patients were clearly stated. These ethical standards are beneficence, non-maleficence, autonomy, confidentiality, informed consent, truth telling and justice.
Delegates attended from Sweden, Finland, Netherlands, Germany, USA, Norway, UK and Estonia to discuss the patient access to primary and secondary health care records. Sweden has been allowing patients to access their records in primary and secondary care for 10 years. Estonia, Norway, Finland, the USA, UK, Finland and The Netherlands also allow patients to access their records with mixed and varied availability.
The discussion covered
1. The EPR and patient access to records systems in Estonia, Germany, Sweden, Netherlands, USA, UK, Norway and Finland
2. European Health data space
The European Health data space “supports individuals to take control of their own health data, supports the use of health data for better healthcare delivery, better research, innovation and policy making and enables the EU to make full use of the potential offered by a safe and secure exchange, use and reuse of health data
The European Health Data Space is a health specific ecosystem comprised of rules, common standards and practices, infrastructures and a governance framework that aims at empowering individuals through increased digital access to and control of their electronic personal health data, at national level and EU-wide, and support to their free movement, as well as fostering a genuine single market for electronic health record systems, relevant medical devices and high risk AI systems. European Health Data Space (europa.eu)
3. Open Notes
OpenNotes is the international movement advocating greater transparency in healthcare. Through research and education, we identify and disseminate best practices for sharing medical information with patients and their care partners. “OpenNotes is not software or a product. It’s a call to action.” OpenNotes Patients and clinicians on the same page
4. Philosophy and ethics of patient access to records Medical ethics – PMC (nih.gov)
Beneficence – “act for the benefit of the patient
Non-maleficence – “Not to harm the patient”
Autonomy – “to be able to exercise self-determination”.
Informed consent
Truth telling
Confidentiality
Justice “fair, equitable and appropriate treatment of persons”
5. Patient access to mental health records and doctors’ notes not to be shared
Should mental health patients, especially when in a paranoid or psychotic state, for example, be able to access their medical records
6. Redaction and requests for non-sharing of information
Children’s and parents’ access to children and adolescents’ medical records. In Sweden no patients or their parents are allowed to see the records of children between the age of 13 and 15 years old. Sweden is revisiting this policy.
7. Usability of health portals and digital divides
8. Patients contributing to their records through patient portals
9. Usability standards for portals
HIFA profile: Richard Fitton is a retired family doctor – GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data
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