What can we learn from our online medical records?
9 February 2023
Patients may be offended or frightened at times, but the benefits of being able to read your medical records online outweigh the negatives. This is the view of Maria Hägglund, who has witnessed how patients have become more involved in their care and gained a better understanding of their health since digital medical records were introduced.
Region Uppsala was among the first places in the world to give patients access to their medical records online in 2012. The ability to log on and check test results after an appointment at a healthcare centre or check what the doctor wrote seems like a given to us today, but it was not always so self-evident in the past. There were in fact protests ahead of the implementation, not least among healthcare staff.
“People were worried that it would lead to a heavier workload within healthcare, that patients would start calling more, that they would book more appointments and that they wouldn’t understand what the doctor had written,” explains Hägglund, Associate Professor in Health Informatics at Uppsala University who conducts research into the effects of having access to medical records.
However, those fears were not borne out; doctors were not swarmed by patients.
“Most people understand that healthcare is under pressure. Instead, patients asked someone they knew or checked online. Many held onto their questions until their next appointment.”
As it turned out, having access to medical records produced many benefits. For example, patients can check whether the doctor’s notes following the appointment were correct, meaning it serves as a type of patient safety function. The medical records can also be used as a reminder to help patients remember what was said during the appointment.
“Above all, we have seen greater participation within healthcare and that patients have gained a better understanding of their health,” adds Hägglund.
Patients may be offended by content of medical records
Expressions used in healthcare can provoke reactions among patients, however. Hägglund gives the example of doctors sometimes writing phrases such as “the patient denies abusing substances”, which merely means that the patient has responded “no” to the question, but which could be interpreted in a different way by the reader. She also notes a common misunderstanding that has arisen in English-speaking countries, where the doctor abbreviates “shortness of breath” to SOB – an abbreviation that is also used for “son of a bitch”.
“A common source of offence is what many perceive to be unjustified comments about being overweight. However, this can be important for healthcare providers to be aware of. There are also examples of patients feeling that the wrong pronoun was used.”
Do people want to read about their cancer?
Naturally, there are cases in which it can be highly distressing for the patient to read what the doctor has written, for example if they find out in the medical records that they have been diagnosed with a serious illness. In a study involving cancer patients, interviews were conducted with patients who had opted to read their records as well as those who had not. The first group preferred to read them and receive bad news at home in order to better prepare for their appointment at the healthcare centre. The latter group stated that they opted against reading them as it was simply too distressing to see the test results in black and white.
“For a minority, it’s maybe not such a good idea to read their medical records. However, I feel that it must always be up to the patient to choose. We potentially need to simply better prepare ourselves for what it actually entails.”
Digital medical records also have a function enabling healthcare staff to write what are known as ‘hidden search terms’. For example, if a doctor suspects the patient has an early stage of an illness, they can write this without the patient being able to see it digitally. This is also an important function in cases where there is a concern regarding violence in close relationships.
Your data must not fall into wrong hands
The EU is now proposing that medical records should be able to be shared across national borders, the aim being to offer people good healthcare even when they are outside their home country by giving healthcare staff access to their medical records.
Hägglund thinks this will improve healthcare, but notes that there are many different security aspects to consider. She takes abortion legislation in the US as an example. Say a person has an abortion in a country where that is legal. How should we ensure that this information is not distributed to countries where it is potentially not legal?
If the proposal becomes a reality, it will also pave the way for the sharing of health data across national borders. In this case, it is not a matter of medical records but anonymised information intended for use in research. In this instance too, it must be ensured that the information does not end up in the wrong hands.
“It should be forbidden to request health data for use in advertising or for calculating insurance premiums. But how can this be guaranteed?”
Although there are risks to consider before the proposal can become reality, the benefits of being able to share health data across national borders are numerous.
“There is a huge benefit to being able to use the health data available. This is something we have seen after the pandemic – how important it is to be able to produce information quickly about how different illnesses spread, what effects they have and how they can be treated. There is an unexploited potential in all of this information.”
Maria Hägglund is an Associate Professor in Health Informatics and Senior Lecturer in Implementation Science at Uppsala University and Uppsala University Hospital. She has conducted research into the effects of patients’ access to their medical records through the national Swedish patient portal, and she leads projects such as the Nordic NORDeHEALTH collaboration that collects and compares data in Sweden, Norway, Finland and Estonia.
In Sweden, research into patients’ access to their medical records online has been conducted since the start via the DOME research consortium under the management of Åsa Cajander.
The proposal for the new European regulations intended to enable health data being shared across national borders is referred to as the European Health Data Space.