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Debate: Registration saves lives

Legislation must both safeguard demands for confidentiality from citizens and ensure that researchers can reap the benefits of access to health-related data, writes Allan Flyvberg, Dean of the Faculty of Health at Aarhus University. He points out that we save lives by being the most extensively registered nation in the world.

By Allan Flyvbjerg
Dean of the Faculty of Health at Aarhus University

Denmark is a pioneer when it comes to building large national registers. In the field of health we have what is – from an international perspective – unique data material that places Danish research at the very forefront. 

The enormous amounts of data are reused in health research to improve quality and in the treatment of patients. In this way this data helps to create a world-class healthcare system. 

Some of the largest health-related breakthroughs are based on health data. 

The correlation between cot death and babies sleeping on their stomach was discovered by research in health data. With the help of health data we have revealed that neither the MFR vaccine nor anti-depressives are the cause of autism in children. 

Danish register researchers have made significant discoveries by correlating register information and then studying correlations between selected diseases and certain types of medicine. For example, we know that heart patients should be cautious about certain types of arthritis medicine, and that there is evidence to suggest that aspirin has a favourable effect on cancer. 

Save money and tailor treatment 

We can allow ourselves to be ambitious on behalf of the patients. Especially if the path from research to everyday clinical practice at the hospitals and general practitioners is shortened. 

A first step toward a more uniform correlation of health registers and quality databases was taken in 2015 when the Ministry of Health and the Danish Regions launched PROCRIN (Program for Clinical Research Infrastructure). 

PROCRIN is a system that gives researchers and doctors the freedom to navigate between data from national health registers, clinical quality databases and data from general practitioners, while at the same time ensuring that patient data is handled securely. 

The goal is to ensure improved diagnosis and treatment, detect disease before they becomes critical, ensure greater patient safety and, not least, healthier health economics. Which is a positive side effect as we can save futile and expensive treatments. 

The vision is for healthcare professionals to have easier access to health data while they meet the patient. A realistic future scenario is one where the general practitioner can prescribe medicine that exactly matches the patient, precisely because previous diagnoses and prescriptions have been taken into account.

Register unease gives food for thought

As with all other aspects of information technology, reality has already overtaken legislation, and IT security has generally been debated on the basis of unpleasant cases where confidential data has been leaked on the basis of human or technical errors. 

In recent years there has therefore been a degree of unease concerning different registers, including those in the area of health. 

It is therefore pleasing to see the current broad political support for ensuring an overview of the use of health data, including an opening for revising parts of the legislation. 

The area requires an intelligent and insightful approach. Because in the future there will be an increasing need to be able to use health data that makes a difference for patients and the healthcare sector. If we do not succeed in this, the progress being made in our common health will slow down. 

But health data must also be collected, stored and used with respect for citizens' demands and an expectation of high levels of security and ethics. Danes must continue to feel confident that their data will be handled securely.