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Researchers discovered why users read their medical records and whether they had received treatment for physical or mental illness.

Half of those who received mental health care found errors in their medical records

Researchers now want to increase competence among both health professionals and the general public. 

Lene Lundberg
COMMUNICATIONS ADVISER
Presented by: Norwegian centre for E-health research
Published

How do people respond when they read their own medical records?

Do their answers vary depending on whether they have received mental or physical healthcare? Do they find errors, omissions, or descriptions they don't like in the medical records?

This has been investigated by doctor and adviser Bo Wang and her colleagues at the Norwegian Centre for E-health Research.

The study was part of an international project. The aim was to investigate users' experiences of access to electronic patient records in Sweden, Norway, Finland, and Estonia.

Researchers in the four countries used national health portals where they invited people to respond to an electronic survey.

“The Norwegian survey was published on Helsenorge.no in early 2022. People who were logged in were invited to respond. Around 9,000 people responded. The majority were women. Approximately 7,000 of them had received treatment in somatic health services. 2,000 had received help for mental disorders,” says Wang.

She was particularly interested in the experiences of those who had received mental healthcare. Few people have researched this so far.

Patients spot errors in their medical records

The researchers gained insight into why users read their medical records and whether they had received treatment for physical or mental illness.

The main reasons they read their medical records were to get information about their health and treatment. They also wanted to make sure they understood what the doctor had said.

One category of questions was about errors, omissions, and offensive notes in the medical record.

“There were many responses in this category, also in free text. It was clear that the questions engaged more people, especially those who had received treatment in mental healthcare,” says Wang.

Bo Wang was particularly interested in the experiences of those who had received mental healthcare. Few people have researched this so far.

A somewhat higher proportion of those in mental healthcare, 69 per cent, reported that access to medical records increased their trust in healthcare professionals. Among those asked in somatic health services, the figure was 60 per cent.

At the same time, a larger proportion of those in mental healthcare said they found errors in their medical records than those in somatic services. The figures here were 49 per cent versus 27 per cent.

Those who had received mental health treatment were more likely to find offensive comments and omissions in their records compared to those in somatic care. The most serious errors were found in medical history, communication, diagnosis, and medication.

Only one in four people informed healthcare professionals about what they believed to be errors the next time they met.

36 per cent felt offended

36 per cent of those with experience in mental healthcare reported that they felt offended by something they read in the notes. 12 per cent of those surveyed in somatic health services said the same.

One person who had received treatment in psychiatry wrote the following:

'I was diagnosed with emotionally unstable personality disorder without any kind of assessment ... which made the whole psychiatry turn its back on me and refuse to help me, even though this diagnosis is invalid.'

Another user described their experience of being disrespected or overlooked:

'The therapist described me in the journal with personal characteristics such as disinterested and absent... I was scared, in pain, and felt run over. I contacted the therapist to have this removed but didn't even get a response.'

Some respondents mentioned being upset at being labelled overweight, especially when weight had not been a topic of discussion during their consultation with the doctor.

Others pointed out that it should be easier to correct inaccuracies in their medical records.

Awareness and training are needed

What can be done to solve the challenge with information in medical records and users' negative experiences when reading the content?

Previous studies have shown that people find it useful to be able to read their medical records. It strengthens trust and cooperation. Read more about this in this article: Reading your electronic health record can put you in control.

In Norway, all patients have the right to access their medical records.

However, research shows that healthcare professionals can be sceptical about giving patients access to everything. This is especially true for people with mental health problems. They can become anxious or confused by reading the documents.

“The ethical questions are difficult. Access to medical records is necessary and required by law. We should take steps to ensure that doctors, nurses, and other healthcare workers better understand that the language they use in medical notes must fulfil several needs. Healthcare professionals don't just write for each other. The patient is involved in the communication,” says Wang.

She believes that healthcare students should learn more about how medical records have evolved from being internal documentation to becoming a transparent part of the interaction.

The language must be objective and non-judgemental. Students need to be aware that disagreements will arise between the provider and the patient. Such training already exists in some places. 

“It's a new way of thinking. The transition is not easy and requires effort. It will probably take time before we see the changes,” says Wang.

She also says that the public should receive better information about the purpose of medical records. They should be prepared for the wording they will encounter.

“The fact that patients can discuss this openly with their provider could contribute to better understanding,” says Wang.

Reference:

Wang et al. Users' Experiences With Online Access to Electronic Health Records in Mental and Somatic Health Care: Cross-Sectional Study, Journal of Medical Internet Research, 2023. DOI: 10.2196/47840

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Read the Norwegian version of this article on forskning.no

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