Europe’s vast collection of electronic patient health records and medical research data holds important clues for battling major illnesses affecting millions. But this important resource is scattered and difficult to search, hampering efforts to make the most of it.
Often, researchers are simply unaware of data that could benefit their field of study. And even if it’s on their radar, pursuing specifics such as reuse rights can be extremely time-consuming and culminate in a dead end. Privacy, legal and ethical issues – as well as the technicalities of data format and presentation – can further complicate matters.
The EU and industry-funded EMIF project addresses this problem by creating a secure online platform that consolidates metadata from a wide variety of sources, creating a one-stop shop – or ‘catalogue’ – to browse and compare what is available. Accompanying contact details make it easy to request access to data and related details, saving scientists both time and money.
“The challenge that medical research faces at the moment is that there’s a vast amount of information that is largely inaccessible. Researchers don’t know that it’s there. If they do, they can’t access it. And even if they can access it, they can’t reuse it in ways that are really productive,” says EMIF co-coordinator Simon Lovestone, a professor at Oxford University in the UK. “That was the challenge that EMIF set out to solve – can we make information and data relevant to research into the public’s health findable, accessible and reusable?”
Advancing Alzheimer’s research
Initially, EMIF has focused on data related to Alzheimer’s and obesity – described by Lovestone as “areas of massive unmet clinical need”. It encompasses real-world, observational information related to both disorders from places such as hospitals, as well as Alzheimer’s-specific data culled from research studies.
EMIF researchers have used the platform to probe whether drugs prescribed for certain conditions also lower a patient’s risk of developing dementia, the aim being to potentially repurpose – or reuse – such medications.
Lovestone noted that a “promising” initial analysis shows that some drugs do seem to do just that, adding to similar evidence from other studies.
EMIF also enabled Lovestone and his team to rapidly locate 1 200 blood samples for research into developing a blood test to determine whether someone has Alzheimer’s before they develop symptoms so as to make clinical trials of anti-dementia drugs more effective by involving such individuals.
Lovestone says EMIF saved about a decade of work.
“Now we may or may not have a blood test at the end of it, but we will have done this super quickly and super cheaply compared to the alternative,” he adds. “And if it turns out we do have a blood test that could help, then it could save huge amounts of money in clinical trials. And if those clinical trials lead to a new drug – well, that’s what we’re all working towards.”
Dementia and prediabetes
Using the EMIF platform – subjects linked to a Finnish study – project researchers were able to make a connection between prediabetes and pre-Alzheimer’s.
“We were able to show for the first time ever that these disorders are linked and they’re linked fundamentally through the basic mechanisms of disease and not, for instance, because people with diabetes get strokes or other changes to their brain that mimic Alzheimer’s disease,” Lovestone says. “So it’s told us something very important in the relationship between those two conditions, which I think will help us explore further drug development.”
EMIF – involving 57 partners from 14 countries – was funded by the Innovative Medicines Initiative, a public-private partnership between the EU and the European pharmaceutical industry.
“It’s been a true meeting of minds between academia and industry and that has meant, I think, that we’ve delivered much more than we otherwise would have done,” Lovestone says.
- Project acronym: EMIF
- Participants: Belgium, United Kingdom (Coordinators), the Netherlands, Spain, Italy, Germany, France, Portugal, Denmark, Estonia, Switzerland, Sweden, Finland, Luxembourg
- Project N°: 115372
- Total costs: € 53 642 677
- EU contribution: € 24 356 848
- Duration: January 2013 to June 2018
Source: European Commission, Research and Innovation Information Centre