Health data on Danes must be handled in an ethically and legally responsible manner. At the same time, it must be possible for researchers and practitioners to access the large amounts of data collectively and without bureaucracy.

2016.02.10

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

Denmark has an impressive collection of data which almost all Danes have contributed to.

Every single day even more health data is added to the registers. This could be in the form of the ECG readings that the paramedic takes in the ambulance while the patient is being transported to the hospital, or the blood samples, MRI scans or other tests that the doctor orders, once the patient is admitted to hospital or comes under treatment.

It can also be in the form of the treatment data that is located in every single patient record. This is also why the discussion concerning the use of this data is so important, so that the country’s citizens can continue to trust the healthcare system.

Some of the data is used here and now for the diagnosis and treatment of the individual patient. The transfer of health data to the other healthcare professionals with whom the patient comes into contact on his or her path through the system is in its very nature vital for the patient.

But the data is still valuable after the patient has finished treatment and been discharged. Health data can subsequently be used in anonymised form for research, where it can provide information about the development of diseases, describe the effect of new methods of treatment and clarify what works and what does not work.

Ensures high quality 

Health data can also be used for more than just traditional research. It can be used for quality assurance and quality improvement, thus meeting a justified requirement from patients for high quality treatment. This is true on a simple level, where the staff at the individual department can check their own quality by occasionally undertaking a systematic review of patient records. This is a way of ensuring that everyone is actually doing what they say they say they are doing.

But new technologies already make it possible to undertake automated quality assurance, using 'search robots' that can search millions of patient records and, for example, find all the patients who have taken a particular combination of drugs. The new technologies have breathtaking perspectives in relation to learning from adverse events and the prevention of serious diseases in special high-risk groups.

The future and the technology offer us great opportunities to create a safer healthcare system with the help of health data, among other things. That is, unless we place obstacles in the way of these possibilities by creating systems and rules concerning the use of health data that are too limited and narrow.

Cloud solutions are the way forward 

The solution could be the establishment of what are known as research machines. There are already examples of these. But the question is whether this solution is far-reaching enough, if the ambition is to integrate data from health registers, quality databases, EPR data and data from general practice in the future.

We must therefore broaden our thinking and be more forward-looking while we focus on how we can build an accessible, non-bureaucratic and secure system in which datasets can be accessed collectively.

One solution could be a 'Secure cloud solution', which can provide access to the data collectively, without physical delivery. A secure cloud solution that is based on the principle of electronic storage and delivery of data must be subject to a high level of security. There must also be clear rules about the quality and security conditions that are required before research and treatment institutions can be authorised to retrieve data. The point is that a cloud solution will make the total data volume available at the same time for both researchers and those who work with quality development.

This solution will potentially get the maximum out of the valuable Danish health data – for the benefit of research and quality assurance – while, at the same time, taking into account citizens' requirements for confidentiality.

This article was published Altinget on 2 February 2016.

http://www.altinget.dk/sundhed/artikel/sundhedsdekan-data-til-gavn-for-forskning-og-kvalitetssikring (in Danish).