Simon Lovestone does not hesitate when asked what EMIF – the European Medical Information Framework programme – has achieved to date. As academic co-coordinator of EMIF, Lovestone has first-hand experience in how the sharing of health data can help researchers advance their work more efficiently and effectively. “For me, one of the first and most material advances of EMIF has been the ready access to large amounts of data and, most importantly, samples attached to that data,” he says. Lovestone’s research group has been working on biomarkers in people with Alzheimer’s Disease (AD) for the past ten years – accordingly, one of his particular responsibilities in EMIF is for Work Package 3: Biomarkers.

Trying to get the samples in order to do analysis of biomarkers is, says Lovestone, very difficult. In the past, his research group has obtained samples via cohorts he has generated. While they’ve seen success from this method, it is both very costly and not scalable. “It’s only good for collecting samples from maybe a few hundred individuals and often those samples that you collect don’t have all the data you want – for instance other items like brain scans – because it’s so costly to amass all of that data,” Lovestone explains.

After getting frustrated by the limitations posed by just using their own samples, Lovestone and his group were eager to collaborate to obtain the data needed to advance their research. “We had some great collaborations with a small number of scientific groups. However, it is inordinately time consuming and not very effective trying to find people to collaborate with from conferences or from reading their papers,” he says of the initial efforts to find collaborators.

“In contrast, EMIF has brought together a group of people that enabled identification of the right cohorts through the cohort selection tool, or the EMIF catalogue. In a study that we’re doing at the moment we’ve already completed a study of 500 individuals and we’re now embarking on a study of 1000 individuals,” says Lovestone. This includes some very specific data that allows the researches to quantitate the amount of pathology in an individual’s brain, where they also have good quality clinical data and where there are samples available.

With EMIF, the group was able to identify these cohorts very quickly and was able to contact the right people to confirm the samples – all of which have now been aggregated and sent to Lovestone’s lab for analysis. “This has saved us literally years and years of work, and has saved literally hundreds of thousands, if not millions, of euros were we have had to collect all the associated data specifically for this study,” says Lovestone. He also notes that others in EMIF have been able to accomplish similar endeavours, by using aggregation of data from different cohorts for a whole range of scientific objectives.

The success seen in this particular case thus far is invigorating – but it’s just the first phase. “What we are really looking forward to doing is doing huge studies on electronic medical records, and looking for susceptibility and risk factors to try and identify better targets for therapy,” he says of future plans. This is an initiative that will be done in collaboration with the EMIF-Metabolics Vertical.

Of the upcoming conference in Budapest, Lovestone says he is looking forward to hearing about the progress of the different work packages, and to meeting others interested in real world data and access to electronic medical records. The progress enabled by EMIF in AD research is undoubtedly impressive – but clearly there is plenty left to do. Lovestone points to a joint study his group is doing with the EMIF-Metabolic vertical, which has been very successful in exploring pre-clinical AD pathology in men with insulin resistance. “We’ve got an amazing data set including samples, they’ve all been analysed and I’m really looking forward to getting together with my colleagues from EMIF Metabolic and across EMIF-AD to discuss the results and what we’re going to do next.”

About Simon Lovestone
Simon Lovestone is Professor of Translational Neuroscience at the University of Oxford. His research interests are in the mechanisms of Alzheimer’s disease and biomarkers for dementia. He is the academic co-coordinator for EMIF and part of the leadership team of EMIF-AD with a particular responsibility for work package 3 – biomarkers.