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2013 Year in Health Data Highlights

2013 was another landmark year for open data!  Across the Federal government all agencies worked to better manage data and information as assets for broader use by the public, private sector, developers and innovators in every industry.  In health data, HHS outlined its Strategy & Execution plan detailing commitments to making its data assets openly available, implement or alter policies that support openness and transparency, and informing and educating contributors to creative innovations across the health and human services landscape.  In an effort to feature the progress made this past year, here are a few of the top stories in health data from HHS:

  1. Transparency in Hospital Inpatient and Outpatient Charges: In May and June 2013, Centers for Medicare & Medicaid Services (CMS) released data on the average charges for the 100 most common Medicare hospital inpatient procedures and 30 selected outpatient procedures. These data show significant variation in what hospitals charge for common services both across the country and within communities
  2. Social Services Entries into the Publicly-Accessible Data World: 2013 Saw a significant increase in the volume of social services data the department made available.  Leading the charge the Administration for Children and Families cataloged over 25 datasets, building the capacity in social service data including a Head Start location application programming interface (API), Child Care Development Fund, and Refugee resettlement data.
  3. County Level Geographic Variation and Chronic Condition Data: Also in June 2013, CMS released new data sets at the county level: one on Medicare spending and utilization, and another on Medicare beneficiaries with chronic conditions. Both data sets enabled researchers, data innovators and the public to better understand Medicare spending and service use, spurring innovation and increasing transparency, while protecting the privacy of beneficiaries.
  4. Geographic Variation Dashboard: In June 2013, CMS launched an interactive dashboard that presents information on state-level variation in standardized per-capita costs for the Medicare fee-for-service population. The interactive format allows users to select the indicator and year they want to display. Users can also compare data for a given state to the national average.
  5. Launch of Data.CDC.gov – In mid-August the Centers for Disease Control and Prevention (CDC) launched Data.CDC.gov is the new data repository that hosts some of the CDC’s most popular data sets. In addition to increased access to data, Data.CDC.gov is powered by the Socrata platform that allows users to filter syndicate and create easy visualizations with the data. These newly Application Programming Interface (APIs)-enabled data can be displayed using visualization tools.
  6. MS Supporting Researchers: In November 2013, the CMS launched the Virtual Research Data Center (VRDC) a secure and efficient means for researchers to virtually access and analyze CMS’s vast store of health care data. The VRDC offers researchers several advantages over the traditional shipped encrypted data files, including lower data costs and access to more recent data. The VRDC also offers greater security for CMS to share data with researchers.
  7. Big Data to Knowledge (BD2K): The National Institutes of Health's (NIH) announced the BD2K program which aims to tackle the challenges of increasing volumes of scientific data.  The goal of this trans-NIH initiative is to develop new tools to analyze, organize, and standardize data so that it is easy for scientists to share and access. The program includes: a new data scientist leadership position, scientific data council for governance and oversight; new funding opportunities for creative minds to generate new tools; and plans to support workshops and training sessions to prepare our scientific workforce for this new era of high-volume biomedical data.
  8. Project Tycho: In late November the University of Pittsburgh Project Tycho announced it had unlocked 125 years of epidemiologic data using CDC datasets.  The project created a large data set that includes all weekly surveillance reports of nationally notifiable diseases for all U.S. cities and states published since 1888, and we have made these data publicly available (Level 1 and Level 2 data) The data set consists of 87,950,807 reported individual cases, each localized in space and time.
  9. Integrating Data Catalogs: The catalog of data available on HealthData.gov crossed the 1000 dataset milestone underscoring the Department’s goal of making the platform a true discovery zone for health and social services data.  Throughout 2013 HHS worked to expand the catalog of public data resources available on the platform. Health data catalogs from various states, beginning with New York with later additions from Maryland, Colorado, and Washington, expanded the catalog and laid the foundation for broader data federation in 2014. 
  10. Engaging the Developer Community to Build Blue Button Enabled Apps

During the summer the Office of the National Coordinator (ONC) Consumer e-Health Program hosted two sold-out Developer Forums in New York and San Francisco to teach practical skills necessary to use Blue Button + standards Site exit disclaimer within patient applications and tools. To make Blue Button + standards Site exit disclaimer easier to use, ONC released thousands of synthetic sample data sets and new Dev training and testing tools.  ONC also had a vibrant year with challenges and codeathons including:

  • The Blue Button Co-Design Challenge Site exit disclaimer to expand our understanding of how patients want to use their clinical data and to increase the number of Blue Button + standards-enabled tools and applications.
  • The “Power to the Patient” Codeathon at Health 2.0’s annual conference, explored the future of Blue Button by making patient claims and Explanation of Benefitsdata easier to use and understand, and patient generated data useful in the clinical setting.

Looking ahead, 2014 promises to be another incredibly productive year for the development of applications and services powered by openly available health data.  The Department will continue to implement policies that further drive openness and transparency of the data it collects and curates.  We look forward to hearing more from you about the leading-edge ideas you have as contributors to this vibrant ecosystem of health innovation.

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