Real World Evidence Evidence & Data Partnerships

Oct 14, 2014 - Oct 15, 2014, Bethesda

This year real patient data will change healthcare.

New Initiative to Turn Big Data into Insight

A new international initiative has been launched with the aim of improving the approach to, and overcoming the challenges of genetic and clinical ‘big data.’



The alliance of over 60 healthcare, research and disease advocacy organizations from 41 countries wants to standardize the way these data are gathered, interpreted and shared, in order to start reaping the benefits of the rise in genome sequencing.

Professor Mike Stratton, a partner of the initiative who is also director of the Wellcome Trust Sanger Institute said that “many groups around the world have recognised the need for improved approaches to bring together genomic and clinical data, and some have made progress addressing this,” adding that “we recognised that something was missing: an international body that spans diseases and institutions, committed to furthering progress in an innovative and responsible fashion.”

The overall goal will be to learn more about the pathological mechanisms that influence diseases and their response to drug therapies; the initiative’s push for standardization will also make it easier to compare individual genetic profiles to a database of sequence and clinical data, according to a white paper published by members of the alliance. 

To facilitate this standardization, the initiative is calling for the development of a non-proprietary software platform to allow for “scalable upload and storage of data from sequencing platforms together with clinical data”; “rapid processing with state-of-the-art generic and custom tools”; “management of security, privacy and user access”; and “downloading and controlled sharing of data and results.” They also specified the need for application programming interfaces (APIs) that will enable the development of third party “apps” customized for particular uses.

The initiative grew out of a meeting of fifty health professionals from eight countries earlier this year, where it was decided that a common framework of international standards was needed in order to allow for the secure and private sharing of clinical and genomic data across borders. “It is generally not possible to predict which changes in DNA sequence lead to clinical consequences,” commented Dr Tom Hudson, chairman of the International Cancer Genome Consortium. He added that “the stakes are high, because if we get it right we can create new opportunities to define diagnostic categories, streamline clinical trials, and match patients to therapy.”

This announcement is part of a bigger movement which sees big data as having the power to revolutionize healthcare; a McKinsey report suggested earlier this year that the US healthcare system could save between $300bn and $450bn every year by using big data to drive efficiency and quality. However, as Rita E. Numerof comments, treating big data as an end in itself is a “mistake,” as “having the data isn’t nearly as important as how you use it.”


For more information and examples of the best sources and applications of big data, download our free industry whitepaper.


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Real World Evidence Evidence & Data Partnerships

Oct 14, 2014 - Oct 15, 2014, Bethesda

This year real patient data will change healthcare.