Difficulties with data
Recent years have seen an explosion in the number of databases containing medical and research data, from Electronic Health Records (EHRs), cohort studies (in which a group of individuals are followed for a number of years), disease-specific studies, and biobanks, to name a few. Because this data is scattered across diverse platforms, it cannot be fully exploited. Linking up the data would allow scientists to significantly advance medical research and drug development.
However, in practice, this is rather difficult. Not only is the data fragmented, differences in coding systems and languages, plus legal and ethical restraints, hamper efforts to combine these sources of data. Furthermore, there are often information gaps.
There is therefore a need for a single system that allows researchers to link data on an immense scale, including patient health records, research data, survey and administrative data, imaging, social, environmental and economic data. Such a system should also be able to bring together data from different populations; this would increase sample sizes and facilitate the study of rare or highly specific subgroups.
A common information framework
EMIF will develop a common information framework that will not only facilitate access to existing data sources, but ease the creation of links between sources and, where needed, collect additional information. The work will require the team to address a number of issues, including data standards, semantic interoperability, ethics, data privacy, legal issues, and the development of an IT platform that allows access to multiple data sources.
To guide the development of the framework, the team will initially focus on two key research issues:
- identifying the mechanisms that make some people more susceptible to dementias (such as Alzheimer’s disease) than others;
- determining which individuals with obesity are most likely to develop complications such as diabetes.
Obesity and dementia are two of the greatest healthcare challenges of our time; EMIF’s work will pave the way for new diagnostic tools and treatments to help patients with these conditions. Looking to the future, additional research areas may be added to the framework through future IMI Calls for proposals.