The Precision Medicine Initiative's (PMI) Sync for Science (S4S) pilot program will not define new standards and specifications for interoperability, but will build on existing open community efforts, according to a new blog post from the Office of the National Coordinator for Health IT.
That's just one of the details published in the March 21 post, written by Jon White, the agency's deputy national coordinator, Josephine Briggs, interim director for the Precision Medicine Initiative Cohort Program and Josh Mandel, a research scientist with Harvard Medical School's department of biomedical informatics. The pilot, announced Feb. 25 by the National Institutes of Health, will allow individuals to access their health data and send it to researchers in support of the goals of the PMI. The Precision Medicine Initiative was announced by President Obama in 2015.
For instance, White, Briggs and Mandel write, the S4S pilot will have two goals:
- Develop methods to facilitate individually-controlled clinical data donations to the PMI Cohort: "It is important that anyone in the U.S. be able to enroll in the PMI Cohort. This includes the ability to easily share clinical data in a structured electronic format that could eventually enable automated data updates over time."
- Accelerate and guide the national ecosystem for patient-mediated data access through APIs: Stage 3 of Meaningful Use requires providers to offer application programming interfaces (APIs) allowing patients to access data via the application of their choice. "The S4S pilot will provide valuable insight into how this requirement can ultimately be implemented across the market."
The pilot will implement a consistent, standards-based workflow which will allow people to connect a research app to their electronic health data, leveraging their patient access rights under HIPAA.
Individual data donation is key to the program. The PMI wants to enroll more than 1 million Americans to provide their health data for research; NIH hopes to enroll 79,000 by the end of 2016. The initial focus of the pilot will be on a core data set that includes medications, problem lists and demographics.
EHRs will be critical in the provision of precision medicine, as they are expected to improve patient care by customizing treatment. However, precision medicine is not a key goal for a number of hospitals, many of which don't even have the capability in their EHRs to capture genomic information.
To learn more:
- read the blog post