More are using quality register data in research.

Eva Stensland was the head of the National Service Environment for 10 years, and therefore she is well acquainted with the professional environments and the content of the quality registers. This knowledge has also been beneficial now that she has held the position of Head of Professional and Research Affairs at SKDE for nearly a year.

The medical quality registers provide unique opportunities to research treatment quality in the healthcare system, and many have gradually come to realise this.

The Goldmine in Healthcare

Figures from the annual reports of the medical quality registers show that in 2021 there were a total of 409 data releases for research, governance purposes, and quality improvement initiatives, an increase of 66 from the previous year.

In 2021, 321 scientific articles were also published based on data from medical quality registers, compared to 286 the year before and 255 in 2019.

This increase in both data releases and scientific articles, Eva Stensland believes, is partly due to more people becoming aware of the existence of such registers and the potential of their content.

— Medical quality registers were referred to as a “goldmine” in their healthcare system in a Swedish report a few years ago, and this is a wealth that more people in Norway have begun to recognise. It has also been important to support and make this data accessible to more.

Can Delve Deeper

The medical quality registers contain detailed knowledge about the investigation and treatment of patients. The advantage of using these registers in research is that health researchers can delve deeper into describing the quality of healthcare services, for example, whether quality varies geographically.

— We can also find out whether the healthcare system adheres to the guidelines that exist for treatment, and we can compare treatment methods. Are any of the methods more effective or less effective than the others? Not least, we can delve deeper into what patients themselves report. Through patient-reported outcome measures (PROM), we can investigate the effects of treatment and any complications and side effects reported by different patient groups. Overall, research gives us greater insight into the causes and consequences of variations in quality, explains Eva Stensland.

If researchers link quality register data with the large patient registers, such as the Norwegian Patient Register (NPR), the Municipal Patient and User Register (KPR), and Statistics Norway (SSB), this provides even greater opportunities to determine whether the healthcare system in Norway offers equitable health services. Or whether, for example, socioeconomic conditions and geography play a role. In June 2022, a doctoral thesis was submitted by Frank Olsen at SKDE that examined whether patients' place of residence, income, and education had any impact on the treatment received by children, cancer patients, and patients with atrial fibrillation in specialist healthcare.

Photo: Ørjan Marakatt Bertelsen

More Research Projects at SKDE

At SKDE, register data has been used for both analysis and research. The analysis section created a health atlas for quality that was published in 2021, using data from various quality registers.

— In November 2022, a doctoral thesis was submitted by Cato Kjærvik using data from the Hip Fracture Register. The work provided much valuable information that is important for both healthcare personnel and patients, including which factors are significant for patients' prognosis after a hip fracture, says Stensland.

Currently, the research section is working on several projects, including two related to cancer. One focuses on what investigations and measures are implemented towards the end of life, and another on treatment choices among elderly patients. Another project examines the significance of elements of acute treatment for myocardial infarction on the subsequent prognosis for patients.

— Additionally, we are working with joint prosthesis data. We are looking at where patients live and where they are treated. More patients are being treated outside their residential area, and we are curious about the reasons for them being treated outside their treatment area. Here, we also interview patients.

Close Collaboration with the Registers

Eva Stensland believes that the close contact between the quality registers and SKDE's research section is valuable and offers many opportunities.

— A close collaboration with the staff in the registers is important because they are familiar with the field and the content of the registers. They can also highlight clinically relevant issues, which can be beneficial for patients. This knowledge helps us produce clinically relevant research. That is, research that is useful for healthcare personnel so that they can provide even better treatment for patients, explains Stensland.

She believes that several other research environments could greatly benefit from using quality register data in their research, for example, in academia.

— Having more researchers in this area can lead us to explore slightly different aspects and find more answers. First and foremost, there is likely much to gain for the clinical professional environments.

Advantages of Register Studies

• Data already exists
• Good representativeness for the relevant patient group
• Enables tracking of patient and treatment quality over time
• Facilitates R-RCT studies (randomised controlled trials)