Currently Viewing:
Newsroom
Currently Reading
Sync for Science - Patient-Driven Data Sharing to Promote Precision Medicine
March 25, 2016 – Surabhi Dangi-Garimella, PhD
What We're Reading: Congress Leaves on Spring Recess Without Zika Funding Vote
March 25, 2016 – AJMC Staff
Dr J. Mario Molina: Medicaid, the Marketplace, and Social Determinants of Health
March 25, 2016
Oncotype DX Test for Breast Cancer Finds Clinical Acceptance, but Disparity Exists
March 24, 2016 – Surabhi Dangi-Garimella, PhD
What We're Reading: Moderate Drinking May Have No Health Benefits
March 23, 2016 – AJMC Staff
Big Gaps in Smartphone Responses to Mental, Physical Health Questions
March 23, 2016 – Jackie Syrop
Duke Study Recommends Against Annual LDCT in a Subset of High-Risk Lung Cancer Patients
March 22, 2016 – Surabhi Dangi-Garimella, PhD
Polypharmacy in Older Americans a Cause for Concern
March 22, 2016 – Surabhi Dangi-Garimella, PhD
What We're Reading: Obamacare, Not Economy, Drove Insurance Coverage Gains
March 22, 2016 – AJMC Staff

Sync for Science - Patient-Driven Data Sharing to Promote Precision Medicine

Surabhi Dangi-Garimella, PhD
Sync for Science-a collaboration between the National Institutes of Health, Office of the National Coordinator for Health IT, and Harvard Medical School-will allow patients to access their own health data, which they can then share with researchers involved in the initiative.
A year after the government announced the Precision Medicine Initiative (PMI), the Sync for Science (S4S) program—a collaboration between the National Institutes of Health (NIH), Office of the National Coordinator for Health IT (ONC), and Harvard Medical School—has opened up avenues for patient participation, allowing patients access to their own health data that they can then share with researchers involved in the initiative.

For the pilot programs to be launched soon, ONC, NIH, and the Harvard researchers expect to collect personal health data from over a million participants across the nation through a collaboration with electronic health record (EHR) developers (Allscripts, athenahealth, Cerner, drchrono, Epic, and McKesson). This HIPAA-compliant process plans to:
  • Develop methods to allow individually-controlled clinical data donation to the PMI cohort
  • Promote patient-mediated data access, something that CMS is working to achieve as well 
This massive interoperability project is expected to allow a more personalized approach through patient participation, improve researcher access to basic clinical data, free provider staff time, and develop a much stronger knowledge base that will empower providers, research scientists, and ultimately the healthcare system.

Interoperability remains high on the governments list of healthcare priorities. At the recent annual meeting of the Health Information Management Systems Society, HHS Secretary Sylvia M. Burwell said, “Technology isn’t just one leg of our strategy to build a better healthcare system for our nation, it supports the entire effort. We are working to unlock healthcare data and information so that providers are better informed and patients and families can access their healthcare information, making them empowered, active participants in their own care.”

The S4S program does not plan to develop new standards; rather, they will build on existing open community efforts such as FHIR, SMART Health IT, Argonaut, and the CMS EHR Incentive Program. Of the million participants, 700,000 will be enrolled through their health providers, while the remaining 300,000 are expected to enroll independently through S4S.

 
Copyright AJMC 2006-2019 Clinical Care Targeted Communications Group, LLC. All Rights Reserved.
x
Welcome the the new and improved AJMC.com, the premier managed market network. Tell us about yourself so that we can serve you better.
Sign Up