Denmark’s Patient Data Goldmine: 5 Country Managers Have Their Say

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Data has been collected within Danish healthcare for more than 40 years, extending beyond the national patient registry to include a broad range of data points, from IVF to the birth registry, abortion, the weight and height of children, and much more. Danes tend to have a high level of trust that their data will not be misused and feed into the country’s databases throughout their lives, creating a potential treasure trove of anonymised information for pharma companies looking for real-world evidence of their treatments’ effectiveness, aiming to recruit patients for clinical trials in rare diseases, or looking to strike value-based access agreements for pricey new therapies. Here, five Denmark pharma country managers outline how they are currently utilising data and the changes they would like to see in the national data system.

 

A True Asset to be Leveraged More

Peter Drøidal, Novartis

“Denmark has a unique health data infrastructure with national registers and electronic medical journals for each patient. This data footprint is a true asset for Denmark in its bid to establish itself as a leading life science nation, but we still do not leverage it well enough. There are several hurdles in the system and a myriad of approaches across the country’s five healthcare regions to working with private companies on health data on aggregate level. There is an ambition to create a single point of entry, but this has not yet been realised, and there are still concerns among many politicians around private use of health data. Finding the right solutions in terms of data privacy is important, and this is addressed as a key action point within the recent Danish Life Sciences Strategy so I am confident that progress will be made, although I am concerned about the speed at which it will do so.

“Novartis currently has 11 ongoing real-world evidence (RWE) studies in Denmark currently, focused on demonstrating the efficacy of innovations locally. While we come with global data, local payers and physicians want local data to assess drugs’ efficacy in a local real-world setting. It is natural that many of the cell and gene therapies developed in small clinical trials are then assessed in a local context post-approval.

“Additionally, we are utilising epidemiological data. Within cardiovascular, this could be assessing the real status of heart failure in Denmark compared to other countries and using that in our market access process. This helps make the submissions as country-specific and relevant for the payers as possible.”

 

A More In-Depth View of Patients

Tore von Würden, Amgen

“The main advantage of Denmark is the high level of trust in the Danish public sector. This means that Danes are broadly accepting of their personal data going into the various databases, which can then be pulled out – anonymously – and used by researchers. This data can tell a researcher what kind of diseases a person has had but also gives plenty of socio-economic information such as how many children they have and how much they make per year, thereby creating a more in-depth view of patients. That is the strength of the Danish system and why Denmark is such an exciting place in which to invest.”

 

Better Defining Value for Access

Julie Enevold Brooker, Janssen

“We have started to use [data] a lot more, especially in terms of utilising real-world evidence (RWE) in our reimbursement applications. Janssen is also now collaborating with DataFair, a Danish health data analytics company that is behind the OSCAR project which aims to develop a secure, virtual platform for the analysis of encrypted and anonymised data from various Danish health data. This is a public-private partnership that will help us identify how to access the data we need for some of these [value-based market access] agreements. Our new products in psychiatry and cell therapy are an obvious starting point to think about utilising this.”

 

A Boon for Clinical Trial Recruitment

Nicolas Dumoulin, Boehringer Ingelheim

“Most of the current 19 clinical trials, which our company is conducting or planning in Denmark, involve diseases which affect a small number of patients. Therefore, the ability to [use data to] identify the correct patient quickly makes this country attractive for clinical trials, especially regarding rare diseases.

It is important to continually assess the effectiveness of products in real life and provide this information to stakeholders and healthcare professionals. That is what we do by generating data in Denmark for Danish stakeholders. Actually, this data is recognized beyond the country’s borders and allows for extensive collaboration with experts.”

 

Deeply Impressive Data Landscape

Catherine Williams, MSD

“I have been really struck by the Danish data registries and the amount of investment that has been placed into them, right through from research to implementation. They are a hugely valuable contributor to the healthcare management of the Danish population. Having been used to battling against data separation and silos in the UK – where although the healthcare system is robust, the level of data integration is not as strong – the data landscape in Denmark has deeply impressed me.

“Furthermore, the country’s handling of the COVID-19 pandemic has shown that Denmark is a closely-knit society with great trust in authorities in terms of, for example, sharing health data and fast adaptation of new digital solutions as the first EU country to launch a digital COVID passport and other digital tools to limit the spread of the virus. I am confident that this is part of the reason for Denmark being one of the very first countries in the EU to more or less fully reopen before summer.”


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