Genomics Research Allows for 'Precision Medicine'-If Data's Available
The data that's gleaned from genomics research could play an increasing role in this type of modeling, whether it's reducing readmission rates or researching cancer in the name of "precision medicine" that's tailored to individual patients' needs.
It's could and not will because, while Davies says "we have some fantastic technology out there" to first conduct and then share genomic research, a mix of professional, personal and cultural factors combine to make data dissemination difficult. Patients fear that data will be sold to pharmaceutical or life sciences firms, while researchers and providers persist in creating data silos.
What's needed, Aronson says, is a more detailed regulatory framework that can address data privacy as well as genomic data use case standards. From a care-coordination and knowledge-sharing standpoint, primary care physicians, specialists and genetic researchers have to be connected. (However, Halamka points outs, health information exchange is no easy task, as each U.S. state and territory has different data sharing standards; what's legal in Massachusetts may be illegal in neighboring New Hampshire.)
There's also an educational component at the caregiver level, Aronson adds. Families need to understand the importance of sharing genomic information.
Or, as Davies says, the industry needs to know that "failure to share data kills people."
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