For many cancer patients, the support of a close relative is crucial to coping with everyday life and care. Yet there is no possibility to share electronic health records on 1177. In connection with World Cancer Day on 4 February, Hanife Rexhepi, a researcher at the University of Skövde, therefore highlights the need to review the legislation so that proxy functions can better support participation, equity and patient-safe care.
Hanife Rexhepi welcomes a debate in which researchers take the lead.
“Many other countries have developed solutions for proxy access within the framework of their regulatory systems. The question is how we in Sweden can find approaches that both comply with legislation and better meet the needs of patients and their relatives,” she says.
Relatives play a crucial role in cancer care
Cancer patients are often expected to navigate a complex healthcare system. At the same time, they lack the possibility of sharing their electronic health records on 1177 with relatives – despite the fact that these often play a crucial role in care. Family and friends frequently take on the role of the hub, helping to search for information and follow up treatment. And not least, they provide emotional support.
Hanife Rexhepi, Associate Professor of Informatics, has together with colleagues conducted a national survey study on how patients use their electronic health records on 1177.se. The study shows that cancer patients, compared with other patient groups, more often state that they access their electronic health records on 1177.se in order to share information with family or friends. In total, around 1,700 cancer patients participated in the study.
"Cancer patients appear to have a greater need than other patient groups to share electronic health records with relatives. This may be related to the fact that cancer, for many, involves both a serious illness and a care situation that is information-intensive and complex, where support from close relatives can be important," notes Hanife Rexhepi, who, with a background as a nurse, conducts research on digital solutions in healthcare.
Increases sense of security
Cancer care often involves a great deal of information and many decisions that need to be made. Sharing the electronic health record with relatives can be a way to obtain support in treatment-related decisions, increase a sense of security and facilitate coordination of care.
Hanife Rexhepi highlights a further aspect of the limited proxy function: today, patients’ possibilities to choose for themselves who should be given digital access to their electronic health records are entirely restricted.
"In practice, it may be perceived as though the patient’s ability to make their own decisions about sharing, or not sharing, their electronic health records is not fully taken into account. This may in turn risk being perceived as disempowering," she says.
Risk of informal sharing
The study does not investigate how patients share electronic health records information in practice. However, Hanife believes that the lack of a proxy function may entail a risk that patients use more informal ways of sharing information with relatives, such as printing it out, which may be less secure than structured digital solutions.
Hidden groups
Hanife Rexhepi points to a further reason why a relative should be able to act as a proxy: "Not all patients have the same conditions for accessing their health records digitally or for being involved in their care. For some, for example older people or individuals with Swedish as a second language, support from a relative may be crucial," says Hanife Rexhepi.
She believes that these differences in conditions risk affecting the possibility of care on equal terms. According to Hanife, the issue is therefore about reviewing how regulatory frameworks and digital solutions can be developed so that proxy functions can better support participation, equity and patient safety in healthcare.
Read the study Cancer Patients’ Sharing of Electronic Health Records with Informal Caregivers
The representative/proxy function on Sweden’s national health portal 1177 – what are the current regulations?
The representative/proxy function on Sweden’s national health portal 1177 was discontinued in 2018 due to insufficient privacy safeguards. The decision has faced ongoing criticism. As of 1 June 2024, a new proxy service is available for court-appointed legal guardians and trustees, but it requires a formal appointment by a Swedish district court.
