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Many were sceptical, but how did it actually go when patients were granted electronic access to their own mental health records?
Access to one's own medical records is now an established part of the service in mental health care in Norway. Some situations, however, can be problematic.
"Previous studies have shown that healthcare professionals in mental health care had concerns about giving patients electronic access to their medical records. This study, conducted after the introduction, shows that there is no need to be so concerned. However, there are still some situations that can be problematic," Paolo Zanaboni says.
He is project manager for Mental Health Access and professor of telemedicine and e-health at the Norwegian Centre for E-health Research.
first published research article from this research project includes in-depth
interviews with 16 mental health practitioners at Helgeland Hospital Trust.
hospital was one of the first in Norway to give its patients electronic access
to their own medical records.
“In this study, we wanted to find out what electronic access to medical records has done to the relationship between patient and therapist in psychiatry. In addition, we have tried to find out if and how often the therapists use the function to deny access,” Zanaboni says.
They have also investigated whether the way of documenting has changed since the medical records became more accessible.
Access to your own medical record
The right to access patient records is regulated by the Patient Records Act.
The right to access your own personal data is important for you as a patient or user to have control over your own personal data.
However, the Patient and User Rights Act, contains some exceptions to the right of access. You may be denied access to information in your medical record if there is a risk to your life or serious harm to your health, or when access is clearly inadvisable for the sake of persons close to you.
(Source: Norwegian Data Protection Authority (link in Norwegian))
There will soon be electronic access across the country
Electronic access to medical records means that patients can log in via helsenorge.no and access their own hospital records.
They will also receive a log of which healthcare professionals have opened their medical records.
The patient's access applies to all medical record documents produced from the day electronic access was opened. Older documents must, as before, be ordered from the hospital in question, and a paper copy will then be delivered.
With electronic access, the patient gains access to the document the moment it is signed by a healthcare professional. In practice, this means that the patient can read what the practitioner has documented immediately after the appointment is over.
Northern Norway Regional Health Authority provided patients with electronic access to their medical records as early as 2015. The aim is for all patients in Norway to have access to the service. The Central Norway Regional Health Authority is the last health region that is in the process of implementing this.
Concerns in mental health care
In 2016, research showed that healthcare professionals in mental health care were significantly more concerned about the Access to Medical Records service than those working with physical illnesses.
Those working with patients with mental health problems saw several possible negative consequences of the new service:
- They felt that the service was not suitable for all patients in mental health care, especially those with serious diagnoses.
- The practitioners argued that the patient record is mainly a working tool for communicating with other healthcare professionals and for documenting the patient's course of treatment. A good number of them felt that they needed to change the way they wrote their records. Some also stated that they noted information about patients in a ‘shadow journal’ that the patient could not read.
- They felt that there was a risk that access to the patient record could damage the patient/treatment relationship, as patients would not like what was written about them in the record.
“The patient record is a working tool used between healthcare professionals to share important information, reflections and tentative diagnoses. At the same time, patients have the opportunity to read their own records to better understand what was said verbally during the consultation,” Zanaboni says.
He goes on to explain that in this sense, the patient record has two different and partly contradictory goals.
Healthcare professionals may occasionally need to share information and hypotheses with other healthcare professionals, which they do not want to enter in the medical record when they know that the patient is reading it.
Can be used in treatment
The healthcare professionals interviewed by the researchers at Helgeland Hospital Trust have good routines for informing patients about access to their own medical records. They often use this service actively in their treatment.
“They say that they now discuss with the patient what they want to document and experience a lot of openness and transparency throughout the treatment process,” Zanaboni says.
He says that some therapists told him that they sometimes asked their patients to log in to read their own medical records and reflect on what the therapist had documented.
“The journal entry could often be the starting point for the next conversation between the two,” the researcher says.
In some cases, electronic access has thus become a new tool in treatment.
It is rare to deny access
The threshold for denying patients access to their own medical records is quite high. Only in a few situations where practitioners believe there is a risk that reading the patient's medical records could harm the patient, is the option to deny access utilised.
In such cases, the practitioner can make all or parts of the medical record inaccessible to the patient.
“Healthcare professionals recognise that the access service can be problematic for seriously ill patients and are concerned that they may have a strong reaction to reading what is written about them,” Zanaboni says.
Additionally, practitioners say that they find it difficult to provide access to patients who appear to be at risk of committing suicide.
The results of this study do not suggest that serious incidents resulting from patients reading their medical records are a frequent occurrence.
“We see that in some cases, healthcare professionals state that they do not deny the patient access, but wait a few hours or days before signing documents, so that they have the opportunity to talk to the patient first about what is written there,” he says.
When abuse is suspected
He says that denial can also be used in situations where it is suspected that children are being abused by their parents.
As a general rule, parents or those with parental responsibility have access to their child's medical records until the child reaches the age of twelve. However, information should not be given to parents or others with parental responsibility ‘if compelling reasons for the patient or user speak against it’.
Electronic access can also be problematic if the patient lives in an abusive relationship.
Practitioners must then consider whether what is documented in the medical records could be dangerous for the patient or their loved ones.
Research on choice of language
The healthcare professionals interviewed by the researchers say that they are now aware of what they write and how they formulate themselves in the patient record.
They believe they use fewer technical terms and communicate in shorter, but also more understandable terms for the patient. They are also more careful about writing sensitive information about family members.
“We're not sure whether these are changes that have occurred naturally over time because the way medical records are written is changing, or whether this is a change that came about because electronic access was introduced,” Zanaboni says.
Several of those interviewed are relatively new to the profession and had no experience of documenting in medical records before the access service was introduced.
May have resulted in closer dialogue
“Has Access to Medical Records led to a more open dialogue in the relationship between therapist and patient?”
“In some cases, this may be the case, which is positive,” Zanaboni says.
He will now investigate whether electronic access has changed patient records.
Doctors themselves state that their writing style has changed. The extent to which and which words and formulations have changed will now be measured.
“We are in the process of recruiting between 20 and 30 patients who will allow us to analyse the content of their patient records. The criterion is that they were patients before and/or after electronic access came into force,” the researcher says.
In Northern Norway Regional Health Authority, this means that they were patients in 2014 and/or 2016. Hopefully, the researchers will be able to see whether patient records in mental health care have changed as a result of electronic access to medical records.
Fagerlund et al. Elektronisk innsyn i journal for pasienter i psykisk helsevern. Helsepersonells erfaringer (Electronic access to medical records for mental health patients: Healthcare professionals' experiences), Psykologtidsskriftet.no, 2021.
About the research project
The research project Psykisk innsyn (Mental Health Access) is being carried out by the Norwegian Centre for E-health Research and will run from 2021-2023. It is funded by Northern Norway Regional Health Authority.
This article/press release is paid for and presented by the Norwegian centre for E-health research
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