Portrait of Maria Hägglund.
Photo: Mikael Wallerstedt

Access to our own patient records is a fundamental right

“By using Nordic eHealth for Patients: Benchmarking and Developing for the Future (NORDeHEALTH) the researchers wish to evaluate the implementation and use of national patient portals in Sweden, Norway, Finland and Estonia. As a matter of fact, this had been implemented in all four countries many years ago,” begins Maria Hägglund, who is head of NORDeHEALTH.

She explains how the Nordic countries are paving the way when it comes to digital health services, such as in terms of access to national patient portals. “Furthermore, it can help to create a sense of control and confidence in that you understand your own situation better,” she continues.

“That’s why we believe that the project is warranted, and we’re quite proud that the Nordics are so far ahead in this field.”

However, according to Maria, there’s still a lot that we can learn.

Perfect timing

“Among other things, we’re looking at what’s worked well and what less so, what we can learn from each other and – last but not least – what we can improve in our own systems. Because although the infrastructure in the Nordics and Estonia is quite similar, there are still big differences in the implementation of access to patient records, as well as regulatory differences which mean that the systems aren’t used in the same ways,” she says.

In Norway, for example, you have access to information linked to the hospital, while in Sweden you have access to all information before, during and after treatment by the health and hospital services. In Estonia, you often don’t get direct access to all your information, but only to certain parts or summaries from your doctor. Finally, in Finland, everything has been divided up a little more. There, day-to-day tasks such as appointment bookings, encrypted online dialogue with healthcare personnel and so on, take place on another portal. So, when you want to read your medical record, you access the national portal. This means that you may not use the medical record portal as often as when taking care of more day-to-day services.

The researchers are also looking at the way in which children and young people access their own medical records. It turns out that there are quite large differences between the countries in terms of when teenagers are allowed access to their records and how long their parents have access to them. In Sweden, parents automatically have access to their child’s medical record until the child is 13, but the child themselves doesn’t get access until they turn 16. In comparison, parents in Estonia have access to their child’s medical records until they turn 18, while the child has access to it from birth. “Though there are not many two-year-olds who take advantage of that,” Maria says.

“Although there are significant differences between the Nordic countries, we have a lot of experience in the field, which we can share with other countries in Europe – those who will soon have to implement the same type of services. In the EU, a proposal for a European Health Data Space has been launched. This will give patients online access to their medical records throughout Europe.

“That’s why we believe that our research results come at exactly the right time, and that there will be a general European requirement for everyone to have access to their medical records. But it’s important to identify the challenges, opportunities and impact linked to open patient portals from the Nordic countries,” she elaborates.

Access to own medical records becoming an integral part of healthcare

“I consider it a fundamental right for patients to have access to their medical records, as each individual patient in the healthcare system needs specific information in order to take better care of their own health. A large number of studies has shown that active patients who are involved in their own care do better because by reading their medical records they gain a better understanding of their own needs.”

Maria also says that both NORDeHEALTH’s and other studies show that patients who read their own medical records use it to a large extent as a tool to be able to remember what was said in any given meeting with healthcare staff:

“These can include questions such as ‘Did I really understand what the doctor or the hospital staff said?’ and ‘Did the healthcare staff understand me or were there any misunderstandings?’. Or it can be thoughts like ‘Perhaps I won’t remember anything when I get home because I was quite stressed out and nervous before the meeting.’ In other words, looking into your own medical records serves as a thorough preparation ahead of a possible next visit to the doctor.”

We need more dialogue in the healthcare sector

“I think we need a greater degree of dialogue across the healthcare sector,” continues Maria and acknowledges that unfortunate situations can also arise by patients gaining access to their own medical records. There can be misunderstandings, for example, and patients can feel mistreated and distrusted.

However, she believes that any misunderstandings and misinterpretations happen whenever a given piece of information is presented verbally. “By accessing the journal, patients will get more specific terms and hopefully see the big picture more clearly,” she claims.

“Most patients indicate that they understand what’s written in their medical record. And if they don’t, they either ask the doctor at their next visit or ask someone they know, or they search for more information online.”

Maria further explains that patients have very different reactions when they read their own medical records. Fundamentally, however, patients feel safer and are assured that the healthcare staff actually listened and heard what the patient said. “In other words, patients get a feeling of control, that they understand more, and that they can manage their own situation,” she explains.

However, she has mentioned that some of her colleagues also look after patients undergoing psychiatric care, where there has been additional worry and concern among healthcare staff about patients possibly being upset or harmed by having access to their medical records.

“In part of the study, we saw that many patients felt violated, or that they had been badly treated or mistreated. That’s why we’re also discussing how to provide better support to healthcare staff so that they can use less formal ‘medical record lingo’ and instead use terms and expressions which are easier for the patients to understand.”

However, Maria emphasises that NORDeHEALTH’s research has so far indicated that a positive impact is the norm, but we must be aware that, as in all types of treatment, there can be unwanted consequences.

The NORDeHEALTH project is part of NordForsk’s research area on the digitalisation of the public sector.


Bodil Aurstad. Photo: NordForsk

Bodil Aurstad

Special Adviser