The European Commission is planning to have its pan-European health information system operational in about one year, an official told a Parliament event on World Heart Day (29 September).
Isabel de la Mata, advisor for public health at DG Sante, said the Commission wants to have an information system set up by about a year from now that pins down indicators of illness and details of healthcare quality around the EU.
The Commission started working on the shared EU health information system in early 2014, which will also compare health policies around the 28 member states. The information system is separate from the Commission’s ongoing work on rare diseases, de la Mata said.
De la Mata met with health experts and other lawmakers this week at a EURACTIV event in Parliament to talk about awareness of cardiovascular diseases, the EU’s number one killer. The event was supported by French pharma company Sanofi and Regeneron.
Lifestyle and genes
Just last week, a WHO study on health in Europe pointed a finger at poor lifestyle choices largely responsible for the staggering number of deaths related to cardiovascular diseases (CVDs). Europeans, the study reported, are the world’s heaviest smokers and drinks and more than half of them are obese.
According to the European Heart Network, there are 1.9 million CVD-related fatalities every year in the EU—making up 40% of deaths across all 28 member states.
But while tobacco and alcohol are two common culprits that doctors and health policymakers warn against to ward off CVDs, awareness of genetic heart diseases is much lower.
Familial hypercholesterolemia, often shortened to FH, is the inherited condition of high cholesterol that researchers say is now the most common genetic disease in Europe. But many people—including doctors—in Europe have no idea what it is.
“If you have FH it means since you were born you have had high cholesterol,” said Alberico Catapano, president of the European Atherosclerosis Society.
Because of the risks associated with high cholesterol life expectancy is cut short for FH patients, who on average live until age 61, according to Professor Leiv Ose of the University of Oslo.
“Somebody who is 40 with FH could easily have the heart attack risk of a 70-year-old,” said Belgian MEP Frédérique Ries (ALDE).
The lack of awareness about FH has caused disagreement about how many people are even affected in Europe. Several organisations cite a statistic reflecting one out of every 500 people as carrying FH.
But according to Catapano, that’s way off.
“It’s more like one out of 200 people. In Europe about 4.5 million people are affected by FH,” he said.
“This is what’s missing: Knowledge of the condition in front of you, knowledge of the physician in front of you and a robust campaign to make people understand what the risks are,” Catapano added.
FH researchers and health advocates agree that there isn’t enough information circulating about the disease. But one new campaign launched this March is taking the information deficit to task.
European patient network
Jules Payne, chief executive of the five-month-old European FH Patient Network, said the conservative statistic that one out of 500 people have FH is common in the UK. But Payne insists that figure needs correcting.
“It’s because we haven’t identified enough patients,” she said.
The new network has an uphill battle ahead. “We want to identify all FH patients in Europe and we’d like to extend it to the world,” Payne said.
“We know of about 28,000 children in the UK that have FH, but we only know 600 of them,” she said. “How many children around Europe are unidentified?”
The network already has member organisations from 19 EU member states and is looking to expand. But because few people know about FH, the network is struggling to establish itself in member states where there is little or no support for FH patients.
“It’s one thing to raise awareness of the condition, but if there’s no services to be referred into you’ve got another problem. Services are being started in the UK and some other countries. But there are still certain European countries that are just not picking up with it,” Payne said.
There are major differences in recognition rates of FH in different EU member states.
A 2013 study from the European Atherosclerosis Society shows the Netherlands is the most advanced country worldwide in diagnosing FH patients and diagnoses an estimated 71% of people with FH. Within the EU, the UK comes in just behind the Netherlands with a diagnosis rate of 12%.
Spain, Belgium, Slovakia and Denmark diagnosis between four and six percent of FH patients, while Italy diagnoses less than 1%.
>> Watch our video: EU needs Europe-wide cascade testing to tackle FH, says expert