Reading your electronic health record can put you in control
Patients communicated better with health professionals, were more prepared before seeing the doctor and increased their engagement in their treatment. This is what people answered in a Norwegian survey on patient-accessible electronic health records.
1037 people answered a survey posted on Helsenorge.no. The respondents looked at their electronic health record (EHR) via digital access at Helsenorge.no.
Paolo Zanaboni at the Norwegian Centre for E-health Research investigated what is typical for people who read their own medical records, how they use and experience the service.
“As of today, the EHR has been researched based on how healthcare professionals use it. Few have asked people how they use the journal,” says Paolo Zanaboni.
He did the research and analysis together with colleagues in E-health Research, NORCE and the Northern Norway Health Authority ICT.
Few read their health record
Despite the fact that patients know that they can access their EHRs, few do.
In the journal they can find a lot of useful data: information about medical consultations, results of examinations, nurses' documentation, allergies, medicines and discharge letters after hospital stay and treatment.
In 2016, only residents in Northern and Western Norway had access to their electronic journal. The online survey was therefore conducted in these two regions. Citizens were invited to participate if they logged on to Helsenorge.no. They were asked how easy it was to find information, what they thought about the content, how it affected their health, treatment and safety and how they thought they would use the service in the future.
“As of today, all citizens and residents, with the exception of those in Central Norway, have online access to their records from public hospitals. Documentation from the GP is still not available. People are also told which health workers accessed their records,” Zanaboni says.
Patients share their record
The majority, 88 per cent, read their EHR to update themselves on what the clinician or hospital had written, and to get an overview of their treatment. Another important reason was to better prepare for a medical appointment or hospitalization. Patients also found it helpful to share documents with their GP, other therapists, family or friends.
More than half found the service when they were on other pages at Helsenorge.no. The others learned about online access to the patient record through the media, health care professionals or the hospital.
Most used in Northern Norway
Patients in Northern Norway used the service more frequently than those living in Western Norway. More women than men used the service. Many used the digital record if they had moderate or poor health, and if they accessed the hospital during the past year.
People with a health background read their electronic journal more often than others, which was also found in a Swedish survey on the topic. Men and young people between 16-25 years did not use the digital journal as much. People who reported that they were in good health and did not access the hospital during the past year also logged in less frequently.
Paolo Zanaboni, Norwegian Centre for E-health Research
Easy to use, language a bit difficult
The majority thought it was easy to use the service. Of those who had trouble figuring out things, only 15 percent asked for help from family, friends, tech support or health professionals. Two out of three had expected to find more information in their journal. Only a few thought there were too many documents.
“85 per cent answered that they understood the content, which is good. But some found it difficult to understand some medical and technical expressions,” says Zanaboni.
Four out of five felt that the documentation made it easier to communicate with health professionals at the hospital. Many answered that they were given greater control over factors affecting health and that they felt more responsibility for their own treatment. One in five expressed concern about what they could read in the journal.
Overall, nine out of ten users were very satisfied with the information they found about their health, and they wanted to continue using the service.
"Why didn't the service come earlier?"
Some respondents also commented freely. 94 per cent of the comments were positive.
Especially patients with chronic and long-term illness appreciated having digital access to their records. One user replied:
“The service has great value for me as a patient. Now I have a much better picture of my own illness than before. I often meet specialists who do not communicate as much, and now I have the opportunity to prepare questions - and I am the best expert on my own illness. Why didn't this service come earlier?"
The closest relatives of a patient can obtain consent for access to the medical record. Of these, one described the benefits as follows:
“I think the service is especially good when you have old parents or very sick family members, who do not get all the information when they are with the doctor. A relative may be given permission to read and attempt to understand the content and follow up on the treatment (…)”
Others wrote that not everyone should have access to their journal. Particular care should be taken with regard to mental health patients, they believed.
Yes to even more info
Several who responded wanted access to older documents from the hospital and documentation from the GP and other therapists. People also asked for images and test results. Many missed information from health regions that had not provided digital access to the medical record at the time of the survey.
There were also technical comments, about login problems and how to access the journal from the mobile phone. Several suggested new features and some wanted to be able to register as a blood donor or organ donor.
In summary, researchers believe that access to the health record is most useful for patients with an increased need for health care, and among those with multiple chronic illnesses. But users over the age of 65 used the service less.
A challenge for elderly patients
"One reason is probably that older people generally have lower digital skills, especially when they log on to an IT solution for the first time," says Paolo Zanaboni.
Another reason why the elderly use the digital platform less is probably that they are unable to do so due to health problems. They also have trouble understanding the information they read.
“This is a major challenge, and worrying. It means that those who are most in need of reading their journal online can't do it.”
He says the health sector must address the problem, and make sure that those who need to read and understand their health information get it right. Yet, more than 60 per cent of those over the age of 65 used the digital solution regularly. Most first-time users were between 16-25 years.
“Our study shows that digital access to the EHR has become a more mature service in Norway. Future research should take a closer look at how patients with chronic illness benefit from this. The health service should work to continuously improve the solution and evaluate the quality,” says Zanaboni.
P. Zanaboni et al.: « Patient Use and Experience With Online Access to Electronic Health Records in Norway: Results From an Online Survey ». J Med Internet Res. Feb 2020. DOI: 10.2196/16144