Impact on: data management

Used wisely, big data has the potential to revolutionise research.

 

What's the problem?

Medical researchers and healthcare systems generate vast amounts of data every single day.  If linked up and harnessed, it could revolutionise medicines development and healthcare. However, most of this ‘big data’ remains in silos, inaccessible to most researchers, its potential untapped. Meanwhile digital technologies and wearable devices offer new and more efficient ways of gathering data, but question marks remain about how to address issues like patient privacy and how these devices fit in with patients’ lives.

 

What is IMI doing about it? 

 

IMI has had ‘big data’ projects since its creation.  Project outputs include the EHR4CR project’s platform that enables controlled access to hospitals’ data for the preparation of clinical trials. The platform has demonstrated its usefulness in speeding up the recruitment of patients, while ensuring that patient privacy is respected. The Open PHACTS Discovery Platform links up existing data sources and allows scientists to rapidly answer complex questions in drug development. And the EMIF project used existing data to generate new insights into Alzheimer’s disease. Today, IMI’s Big Data for Better Outcomes programme is addressing the technical, legal and ethical issues that currently prevent researchers from making full use of the data that is out there. What’s more, the projects are putting ‘big data’ principles into practice to advance research in the fields of cardiovascular disease, haematological malignancies (blood cancers), Alzheimer’s disease, and prostate cancer. IMI also boasts a number of projects working on health-related mobile and digital technologies.

 

IMI research is...

...cutting down on the time it takes to carry out clinical trials EHR4CR's software helps clinical trial managers make sure they can recruit enough patients for their studies, while Pharmaledger matches the right patients to the right trials. EU-PEARL is testing out trials that share a control group while testing multiple drugs from different companies at the same time, and Trials@Home is piloting trials that run remotely, making it easier on participants and generating more and better data.
… showing how real-world electronic data records can be used to make quick, evidence-based decisions

It can take months or even years to gather evidence needed to make decisions in healthcare. EMIF has created a data catalogue of electronic databases containing real-world data records about different diseases, and made it available to researchers. EHDEN has linked up a (growing) network of real-world data sources to help answer research questions quickly, while GetReal focuses on making it easier for decision-makers - like payers and policy makers - to use real-world data to make better choices about new innovations.

...finding out what aspect of their condition patients care most about 

Clinical research needs to address the needs of patients. HARMONY are analysing anonymised patient data from different sources to find out about patients’ priority outcomes. PIONEER is carrying out the same big data analysis to make interventions more efficient and patient-centred in men diagnosed with prostate cancer, while BigData@Heart’s real-world data-driven research platform is providing insights that are helping usher in treatments tailored to individual patients.

…using personal devices, apps and motion sensors to bring clinical trials home

Smartphones and wearable devices like smart watches can help really understand how patients experience their conditions in their everyday lives. RADAR-CNS is studying whether they can be as an early warning of relapses of depression, MS and epilepsy, while RADAR-AD is using devices and apps to measure mobility in people with Alzheimer’s, and IDEA-FAST is focusing on sleep disturbances. Mobilise-D is building a system that can monitor and evaluate people’s gait in various diseases including Parkinson’s and congestive heart failure.