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October 11, 2016

Data transparency gets further boosts in new HHS Open Government Plan

  • Agency
  • Genetics/Genomics

Health Care Dive

Dive Brief:

  • The HHS has announced its fourth Open Government Plan in which it details initiatives that build on its goals of increasing transparency and boosting collaboration with stakeholders, particularly through data sharing.
  • The plan specifically outlines efforts toward new legislation that would increase transparency around financial data for information technology programs, as well as HHS' efforts to better respond to the public through Freedom of Information Act (FOIA) requests.
  • In addition to announcing new flagship initiatives, the plan discusses "substantial progress" achieved by HHS on the initiatives of the first three versions of the HHS Open Government Plan and stresses the role of the public in achieving progress via collaboration.

Dive Insight:

Among the plan's flagship initiatives are the PMI Cohort Program, under the larger Precision Medicine Initiative (PMI), which aims to engage at least one million U.S. participants in providing a range of health, environment, and lifestyle information for efforts toward targeted prevention and treatment of diseases. 

Precision medicine is expected to revolutionize healthcare, and to have a market worth more than $87 billion by 2023, according to Global Market Insights, Inc., which specifically noted the importance of favorable government regulations driving that growth, including the Precision Medicine Initiative.

The federal government has been pushing for greater data transparency though the sharing of information may not be enough to enact change. The PMI Cohort Program aims to be revolutionary not just in terms of its data collection, but also in its effort to empower study participants along with healthcare professionals and researchers to create "a new model of research in which people become true partners in the process, not research subjects." Participants will choose what data to share, have input into study design and implementation, and access to "a wide range" of their individual data and aggregate study results. 

Among the HHS Open Government Plan's other initiatives are promotion of the Open Payments initiative, which shares data on industry and provider financial relationships, using new technology to speed data delivery to Medicare beneficiaries, improving our block grant programs that support children and families, and creating a public comment database to assist in the development of the Physical Activity Guidelines for Americans.