Health IT Now Coalition www.healthitnow.org,, a diverse group supporting incentives to deploy health IT and the Center for Data Innovation http://datainnovation.org a leading think tank, sponsored the event “Data-Driven Medicine in the Age of Genomics” on December 11th. Joel White Executive Director of Health IT Now told the attendees that genomic medicine holds a key to unlocking the future in medicine and personalized health.
In a new development, The University of Chicago is collaborating with the National Cancer Institute to establish the NCI Genomic Data Commons www.cancer.gov/newscenter/newsfromnci/2014/GenomicDataCommonsNewsNote.
Genomic Data Commons (GDC) will be able to store and harmonize cancer genomic data generated through NCI-funded research programs. The GDC will eliminate a major chokepoint to enable streamlining access to data for researchers regardless of their institution’s size or budget.
Toby Bloom PhD, Deputy Scientific Director, for Informatics at the New York Genome Center (NYGC) www.nygenome.org participating as a panelist at one of the roundtables, discussed the promise of genomics and described how NYGC is collaboratively working to bring genomic science to the forefront.
She explained how NYGC has partnered with the Patient-Centered Outcomes Research Institute (PCORI) along with a consortium of ten medical institutions to establish the New York City Clinical Data Research Network (NYC-CDRN) www.pcori.org/research-results/2013/new-york-city-clinical-data-research-network-nyc-cdrn.
The network will bring 22 organizations across seven systems in the nation’s most populous and diverse region together to pursue data sharing and patient-centered clinical research both individually and collaboratively. The goal is to share longitudinal data on at least 2.5 million patients and potentially as many as 6 million patients.
The NYC-CDRN will include clinical, patient-reported, patient-generated, bio-specimen, claims, registry, and study-specific data on a population of patients receiving healthcare at the participating organizations. The project is going to reflect the full diversity of people living in the New York City region.
According to the consensus of the speakers at the meeting, the future indicates that the storing and the sharing of genetic data will require changes in government policies, regulations, legislation, infrastructure, and will need systems to be interoperable.