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.
EHDEN has dramatically demonstrated the power of using clinical data in research by replicating, during a five-day ‘study-a-thon’, the results of a systematic review covering 20 years of research, and a multi-year clinical trial.
HARMONY uses big data to gather , integrate and analyse anonymous patient data from a number of high-quality sources in order to define clinical endpoints and outcomes for blood cancer patients.
Thanks to WEB-RADR, a smartphone app is being used internationally for reporting side effects of medicines.
MELLODDY have shown that ‘federated learning’ can be used to pool datasets from multiple pharma companies without revealing any valuable secrets.