Individuals that support the mission of President Barack Obama’s Precision Medicine Initiative can now take action by accessing their health data and sending it to precision medicine researchers.
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The National Institutes of Health (NIH), ONC and the Harvard Medical School Department of Biomedical Informatics announced the formation of the Sync for Science (S4S) pilot, which lets patients turn their personal health data over for precision medicine research. This data will go to the Precision Medicine Initiative (PMI) Cohort Program, which is intended to collect and analyze the data of at least one million U.S. patients. The S4S workflow will be standards-based and be built on open specifications, namely HL7 International’s Fast Healthcare Interoperability Resources (FHIR) and OAuth, according to an entry published on ONC’s Health IT Buzz blog.
The S4S project will allow patients to take their personal data — which they are required to have access to as mandated by HIPAA — and connect it to a research application. The two main objectives of the program are to create a way for any person in the U.S. to contribute their health data to the PMI Cohort and to establish a reliable method for healthcare providers to distribute health information to any patient that asks for it, something that is part of meaningful use stage 3 criteria. The S4S pilot’s first target will be a data set that includes problem lists, medications and demographics.
The PMI, announced in January 2015, is due to receive roughly $215 million in funding in 2016. The NIH will get $130 million of that money to aid them in building and maintaining a million-patient research cohort. The cohort should be representative of the U.S. population and include individuals from various races, geographical locations and social and economic backgrounds. The majority of the remaining PMI funds ($70 million) were apportioned to the National Cancer Institute, which is studying cancer genomics.