The recent push to begin implementation of the Precision Medicine Initiative (PMI) has received support from numerous academic, industry, and clinical partners. The key component of this initiative is to embrace participants as colleagues in research and to encourage a community of participants, researchers, and citizen scientists to make the most of the valuable data contributions. From the technical perspective, integration of a wide array of devices, applications, and data repositories will require the extension of existing protocols to allow participants to freely access and share their data. To achieve these goals, the PMI working group recommended the creation of “Sync for Science”.
Several standards have emerged for obtaining data from Electronic Health Records (EHRs). These include Blue Button technology and the Fast Healthcare Interoperability Resources (FHIR) specification as current industry standards. In particular, FHIR is continuing to expand with an active development community. However, these resources are primarily focused on clinical data acquisition and exchange. Fortunately, they have been built as extensible formats that can support the features required for Sync for Science (S4S).
Based on the proposal requests for the PMI, additional S4S requirements will include:
- Synchronization of wearable and other sensor data
- Management of research- and clinical-grade device data
- Genomic data management
- Biospecimen metadata exchange
- To identify participants who may be willing to submit specimens and to identify/manage specimens after submission
- Research result exchange
- To communicate findings back to participants
- General methods/approaches to ensure data “synchronization” between data repositories
While there is a push to develop and implement this standard, there is no formal group to lead development at this time. While the S4S protocol will likely extend existing standards such as FHIR, a dedicated group to include developers and citizen-scientists will ensure the long-term success of S4S. To collaborate on S4S, more information can be found at: http://www.sync4science.org