Denmark is a digital health frontrunner. At an individual level, people can access their own electronic health records held by hospitals, municipalities and general practitioners. At a national level, aggregated population data is securely stored, monitored and analysed by the Danish Health Data Authority, which sits under the Ministry of Health and employs around 300 people, including statisticians, economists and epidemiologists. On World Cancer Day (4 February), Mette Keis Jepsen, Head of Analytics, Statistics and Economics at the Danish Health Data Authority, shares some of her insights about how population health data analysis is leading to improvements in cancer care pathways.
World-class health IT
Denmark’s national digital health infrastructure is considered world class. It is characterized by high levels of public trust and strong IT security. Allowing people easy access to their personal health-care records has contributed to improved public health literacy. Digital technology has also expanded the scope of health research, for medical treatment and for health-care planning, management and quality improvement.
“There was always a strong tradition of population health data collection for research in Denmark,” explains Jepsen. “We have many examples of how data monitoring and analysis helped identify areas for improvement in health-care delivery and the best solutions. It requires us [in the Authority] to work closely with clinicians and to understand their needs, creating a kind of knowledge feedback loop that ensures we measure the most useful things, define the right questions and interpret findings appropriately.”
It requires a range of different skills, both statistical and social, to understand the context of data and then to apply the relevant statistical tools in accurate and responsible ways. It also takes a lot of time and work to agree common understandings of specific measurements or “indicators”, which are then used to paint a picture of the health of the population and how well the health system is performing. On the nature of this type of collaboration, Jepsen says, “Those interactions are very important. We don’t do any of this alone as researchers, economists or doctors. We do it together”.
Improving population cancer survival
One such example of how data monitoring led to observable improvements is in the area of cancer survival. In the late 1990’s, national population data showed that rates of 5-year cancer survival after diagnosis were significantly lower in Denmark than in neighbouring European countries. There followed a concerted campaign, championed by a committed health minister, that involved restructuring cancer care services (centralizing surgical care to deliver better quality services in fewer hospitals), better access to treatment and the roll-out of organized cancer screening programmes. As a result, Denmark succeeded in increasing survival from 48% (of people diagnosed with cancer and still alive at year 5) in 2002 to 61% in 2014. Presently, survival rates for various types of cancer in Denmark compare favourably with most other European Union (EU) countries.
Population data also highlights where more work is needed. While significant strides have been made in extending and improving quality of life after a cancer diagnosis, the number of people being diagnosed with cancer in Denmark is still higher than the EU average. Some of the rise in identified cases of breast, cervical and colorectal cancers can be attributed to increased cancer screening. However, the data also point to the need for stronger public health and prevention policies, especially around tobacco and alcohol. Other recent data show a concerning trend of increased waiting times between referral and initial treatment for breast cancer, beyond the recommended 30-day maximum target. Responding to these negative trends by delivering timely diagnosis and treatment, so important for breast cancer, will ensure breast cancer survival rates continue to increase as they have been. Decision-makers, with access to population health data by region, by hospital and by disease area (such as breast cancer), can more clearly identify where the challenges lie and where to concentrate resources.
Transparency in decision-making
For Jepsen, who studied economics and worked in various roles across the health sector, making population and systems-level data publicly available is as much about providing transparency as it is about tracking disease patterns. Transparency builds trust and it is not by chance that people in Denmark have high levels of trust in the health system. “Our data shows how public money is being invested in health care. With finite budgets, debates around the best way to spend money on health are inevitable. Good data can help inform those difficult discussions and also demonstrate how well a policy is working.”
She welcomes ongoing dialogue around data protection regulation and ethics, stating that, “it’s a balance; it needs to be discussed and explored all the time”. Digital health involves managing people’s sensitive data ethically and responsibly, as well as protecting it and data systems from cyber-attacks. “In Denmark, we pay a lot of attention to these questions and to the security issue, and that is why there is high trust in the health-care system,” says Jepsen.
Future developments
There is always room for further progress, even in Denmark’s cutting-edge digital health system. “I have one wish left,” Jepsen reveals. “My dream is that one day we could deliver a single internet site, which individuals would securely log into to see all of their personal data in one page, and that they could also access the research that is being informed by their data, much of which is still kept behind medical journal paywalls.”
The Danish Health Data Authority’s cancer data monitoring and analysis have delivered tangible benefits for cancer patients. Jepsen remains cognisant that with every new possibility the data unlocks, it also presents inherent risks. “Sometimes we get carried away with what is possible to do with data. But we must continue to reflect on the ethical question: because something is feasible and even permissible, is it the ethically right thing to do?”
In 2021, WHO/Europe launched United Action Against Cancer – a pan-European cancer movement from grassroots to government to eliminate cancer as a life-threatening disease in Europe. To achieve this aim, WHO/Europe is supporting subregional and national dialogues on strengthening health systems to improve the cancer care continuum, with patients at the centre. Improving data quality, management and utilization for evidence-based decision-making is a key component of WHO’s technical assistance to Member States. Quality data can help countries identify gaps and develop targeted, evidence-informed strategies to strengthen patient pathways and improve cancer outcomes. Under its digital health flagship initiative, WHO/Europe has developed a framework to support the use of quality health data for decision-making at all levels of the health system.