Open Health Data at HHS
Open data at HHS has become an integral piece of supporting the agency’s mission. Sharing and disseminating our data resources internally and externally with innovators has reaped enormous benefits for all users and provides valuable insights back to HHS. Every Operating Division (OpDiv) in the Department continues their work to improve their open data capacity and capabilities. Each effort is increasingly focused on supporting HHS’ core mission categorized by four strategic goals: Strengthen Health Care; Advance Scientific Knowledge and Innovation; Advance the Health Safety and Well-Being of the American People; Ensure Efficiency, Transparency, Accountability, and Effectiveness of HHS Programs.
Strengthen Health Care
The Centers for Medicare and Medicaid Services (CMS) is one of several OpDivs contributing to strengthening health care by providing a growing array of data that are instrumental in improving healthcare quality, making coverage available to the uninsured, and improving population health through the meaningful use of health IT among many others. Following the implementation of the Affordable Care Act (ACA) CMS makes insurance marketplace data available supporting transparency. Equality in health care delivery is also a focal point of the Department. The CMS Mapping Medicare Disparities tool is an interactive map from CMS data that will be used to identify areas of disparities between subgroups of Medicare beneficiaries. Data resources will continue to emerge from HHS that will help the healthcare ecosystem remove these inequalities. HHS supports a variety of initiatives to promote adoption of health IT and standards among health care providers. The programs and policies that scaffold national health IT improvements produce open data on the Health IT Dashboard run by the Office of the National Coordinator for Health IT. Here users will find datasets on ongoing program performance, surveys of healthcare providers and other data related to planning and policy making.
Advance Scientific Knowledge and Innovation
HHS leverages its research investments to guide the transformation of clinical and translational science programs to reduce the time needed for laboratory discoveries to become treatments for patients. Research supported by HHS is not only yielding many benefits right now, but it will also have a long-term impact on the future of our nation’s health, economy, and communities. Following the tenets of the Public Access to Research Data Policy, six HHS OpDivs (NIH, CDC, FDA, AHRQ, ASPR, ACL) are actively pursuing plans to make the results of federally funded research data openly available. A noteworthy advancement is being piloted by NIH as part of the Big Data to Knowledge (BD2K) initiative. DataMed is a prototype biomedical data search engine. Its goal is to discover data sets across data repositories or data aggregators. The number of datasets available via DataMed will increase massively as the agency moves this project from pilot to implementation in the future. Similarly the Centers for Disease Control and Prevention (CDC) make hundreds of datasets available for further insights into public health, surveillance and epidemiology. CDC is actively engaging the public to support advancements in these domains, applying past learnings from outbreaks like Ebola to current efforts to track and treat the Zika Virus. During the Ebola outbreak the technology and development community sought sources of data to help combat the spread of the disease. CDC has since established a GitHub repository for public collaboration and knowledge sharing to control the spread of the Zika virus. These, and many others activities across the Department, are significant advancements in the availability of research data to advance scientific knowledge and innovation.
Advance the Health Safety and Well-Being of the American People
openFDA will continue to evolve as an exemplary platform for open safety data from the Food & Drug Administration (FDA). openFDA allows access to data about drug adverse event, drug recall enforcement reports, medical devices, and food recalls to name a few. The FDA is expanding its catalog of APIs and the user community’s ability and engages the innovator community on open platforms like GitHub and StackExchange.
Our efforts to ensure efficiency, transparency, accountability, and effectiveness of HHS Programs will take several forms in the coming years, a few of which are highlighted here. The HHS Freedom of Information Act (FOIA) office is planning to update the agency FOIA policies with new proposed rule, proactively embracing the FOIA Improvement Act of 2016. The rulemaking will, among other goals, embrace the public’s right to request information with updated procedures that coincide with modern technology. Additional transparency work has been done by the HHS Office of the Inspector General (OIG) which makes the results of evaluation and audit reports publicly available. The OIG has been instrumental in the investigations of the Medicare Fraud Strike Force’s work to reduce fraudulent Medicare billing. OIG, CMS and the U.S. Department of Justice (DOJ) collaborate on the use of interagency data resources that are not publicly available, but are made open to the OIG and DOJ for program integrity and law enforcement actions.
HealthData.gov serves as the discovery resource for publicly available data assets, as well as a platform for communications, commentary on, and feedback about the data to improve the public’s understanding of each data set. The platform helps new data users discover resources they may not otherwise know exist. This site is a flexible platform that acts as a discovery resource for new and seasoned users across the healthcare ecosystem, from researchers to technology developers, and healthcare professionals to academia. Any organization or individual is free to employ the data to solve problems in the transformation of our nation’s healthcare system through data driven innovations in areas such as: research; technology development; healthcare delivery; academia; policy making; and human services delivery.
Going forward HHS will continue to spur innovation by participating in hackathons, launching prize and challenge competitions, and leading informational in person and online sessions to foster public engagement without open data assets. The annual Health Datapalooza convenes HHS data curators, technology developers, entrepreneurs, policy makers, researchers and more to explore the opportunities available through open data innovation and entrepreneurship. Each year HHS open data is on display as companies large and small demonstrate the alternative value they’ve derived from these data resources. HHS will continue to support the Datapalooza as it provides a strong signal for the trajectory for healthcare data analytics, how companies are using open data to fuel their innovations, and areas where the Department should focus its open data efforts in the future.
Public Provider Enrollment Files
CMS is committed to strengthening program integrity, as well as supporting the provider and supplier community through increased transparency. The continued growth of programs that require enrollment in Medicare fee-for-service as a prerequisite has steadily increased, as has the demand for information about Medicare Enrollment from the healthcare industry. To meet these needs CMS began publishing a list of all providers and suppliers enrolled in Medicare. This public provider data allows users, including other health plans, and researchers the ability to access Medicare data.
The Public Provider Enrollment file set consists of individual and organization enrollment information on all providers and suppliers, nationwide who are approved to bill Medicare. This includes key unique identifiers, enrollment type and state, names, NPI, specialty, and limited address information (City, State, Zipcode). This data also focuses on data relationships as it relates to Medicare Provider Enrollment and the reassignment of benefits. The information in the file is extracted directly from the Provider Enrollment Chain and Ownership System (PECOS), and will be updated quarterly. The information will only be updated through submission of updates to enrollment information via PECOS. Providers and suppliers would need to contact their respective Medicare Administrative Contractor (MAC) to make enrollment updates, or by going to https://pecos.cms.hhs.gov. Updates will be shown with the next release of the file.
The long-term goal of this initiative is to continue to expand data elements available in the files, and eventually consolidate other existing public lists of provider information, such as the Ordering and Referring File, Part D Prescribing File, and Revalidation Lists. Initial release of the data consisted of individual and organization provider and supplier enrollment information similar to what is on Physician Compare. Future releases will include data elements based on industry feedback as well as align with other CMS projects.
CMS believes the release of the enrollment data provides a clear and transparent way for providers, suppliers, state Medicaid programs, private payers, researchers, and any other interested individual or organization to leverage Medicare Provider Enrollment information.
Improving Temporary Assistance for Needy Families (TANF) Financial Data Collection
The Administration for Children and Families’ (ACF)-196 TANF Financial Data Collection Form was designed to monitor expenditures by grant year and ensure compliance with various statutory requirements governing the use of federal funds and state Maintenance-of-Effort (MOE) expenditures. The Department, Congress, research organizations, and other stakeholders use the data collected to gain an understanding of the types of activities on which states are spending their funds and analyze trends in how states choose to distribute their program funds. Accurate and complete expenditure data is crucial as it provides the foundation for a well-informed policy analysis.
After consideration of comments received from interested parties and Office of Management and Budget (OMB) approval, the Office of Family Assistance (OFA) introduced a new quarterly TANF financial data form: the ACF-196R, which was effective starting in FY 2015. The ACF-196R implements two basic changes to TANF quarterly financial reports: modifying and expanding the list of expenditure categories, and changing the accounting method used to report expenditures and monitor grant awards.
In order to eliminate ambiguity in definitions, create categories and definitions that are mutually exclusive, and gain greater insight into how states spend TANF and MOE funds, without placing an undue reporting burden on states, OFA revised the expenditure categories and accompanying definitions used in TANF financial data collection. OFA also added the ACF-196R–Part 2, which requires narrative descriptions of expenditures reported as “Other,” and assistance and non-assistance “Authorized Solely Under Prior Law,” as well as an explanation of the methodology used to estimate expenditures, as appropriate.
The accounting methodology is also improved, as states are now required to report actual expenditures made in a fiscal year with each open grant year award. If a state needs to adjust an expenditure reported in a prior year, it will revise the report for the fiscal year in which that expenditure occurred, rather than account for that adjustment in the current year’s report. OFA also worked with ACF’s Office of Administration, which developed the capacity to generate real-time reports that sum expenditures made with each open grant year award during the fiscal year. The quarterly reporting methodology and new data collection system facilitate both the monitoring of grants, as well as the ability to obtain accurate fiscal year expenditures to inform TANF policy analyses.
The improvements to transparency are already evident: in FY 2015 only 4.1 percent of TANF and MOE funds were categorized as “other,” compared to 14.7 percent in FY 2014. OFA plans to work with states and the Office of Grants Management to continue clarifying expenditures in the “other” category. OFA will also engage in ongoing dissemination activities to communicate the changes to TANF financial reporting and share the FY 2015 data.
Open Government – Head Start
Head Start is a federal program that promotes the school readiness of children ages birth to 5 from low-income families by enhancing their cognitive, social and emotional development. In addition to education services, programs provide children and their families with health, nutrition, social, and other services. Head Start services are responsive to each child and family's ethnic, cultural, and linguistic heritage.
Since its inception, Head Start has served more than 32 million children. In 2014, Head Start was funded to serve nearly one million children and pregnant women in centers, family homes, and in family child care homes in urban, suburban, and rural communities throughout the nation.
At the Office of Head Start (OHS), we are committed to making information available to the public in creative, innovative, and effective ways to ensure a transparent and open government that is truly accessible. In the past two years, we have reached milestones while also setting new goals. We developed and released a mobile app for Apple and Android devices as planned which provides customized mobile-friendly access to resources and locator on the Early Childhood Learning and Knowledge Center (ECLKC) – the Head Start website. We released improvements to the Head Start locator on ECLKC for users to better navigate to a Head Start location and made enhancements to the Program Service Report web application to help users better understand the reports.
In addition to these enhancements, we also released the Career Center, the Funding Opportunities Announcements Locator, and implemented increased security by adding the federally mandated Two-Factor Authentication. Finally, OHS migrated the ECLKC from the traditional and outdated co-located hardware and into a cloud-based hosting environment.
Currently, we are beginning the transition to a new open source content management platform (Drupal8 CMS) that will make information available to the public for programmable use. This will also allow for sharing content through syndication by RSS or embed codes. We will roll out the platform progressively during FY 2017. We are also working on the MyPeers pilot, an online platform that will connect Head Start staff across the nation to promote peer-to-peer learning.
Moratoria Provider Services and Utilization Data Tool
As part of its commitment to transparency, the Centers for Medicare & Medicaid Services (CMS), on June 22, 2016, made its first quarterly update to the Moratoria Provider Services and Utilization Data Tool (Data Tool). CMS can utilize this tool to retrieve data to help assess geographic and health service areas to consider a moratorium on a new provider. Users of the tool will find a set of interactive maps and a dataset showing national, state and county-level health care provider and utilization data of ambulance and home health services.
In addition to updating the data for these services, CMS is committed to adding data about other provider services, and this Data Tool now includes claims data for Independent Diagnostic and Testing Facilities (IDTFs) and Skilled Nursing Facilities (SNFs) even though these provider services are not part of our current, temporary moratoria efforts. The new data for all service categories covers the 2015 calendar year.
Medicare claims data were analyzed for a 12-month reference period and are scheduled for quarterly updates to reflect the most recent 12-month reference period. The most recent update not only covers the original 12-month reference period (covering October 1, 2014, through September 30, 2015), it now includes claims data from January 1, 2015, to December 31, 2015. To facilitate analysis of the data, CMS has included a (new Technical Appendix for user convenience.
In the summer and fall of 2016, CMS plans to expand the Data Tool to broaden the focus outside of the Moratoria areas. The Data Tool will present national, state, and county data about market saturation in specific service areas such as Ambulance, Home Health, Skilled Nursing Facilities, Independent Diagnostic and Testing Facilities, and Hospice facilities.
The Data Tool is available through the CMS website at: https://data.cms.gov/moratoria-data.
Increasing formulary transparency for essential health benefit plans
Starting in 2016, the Centers for Medicare and Medicaid Services (CMS) established formulary requirements for non-grandfathered individual and small group market plans, on and off of the Marketplaces. These requirements include publishing an up-to-date, accurate, and complete list of all covered drugs on the plan’s formulary drug list, including any tiering structure that it has adopted and any restrictions on the manner in which a drug can be obtained. The list must be easily accessible to plan enrollees, prospective enrollees, the State, the Exchange, HHS, the U.S. Office of Personnel Management, and the general public. A formulary drug list is easily accessible when: it can be viewed on the plan's public Web site through a clearly identifiable link or tab without requiring an individual to create or access an account or enter a policy number; and if an issuer offers more than one plan, when an individual can easily discern which formulary drug list applies to which plan. The purpose of these requirements is to improve the transparency of formulary drug lists for enrollees and our goal with this provision is to ensure that the formulary drug lists are accurate, complete, and up-to-date.
Increasing transparency of qualified health plans’ (QHPs) provider directories
Starting in 2016, the Centers for Medicare and Medicaid Services (CMS) established provider directory requirements for QHPs. These QHP issuer requirements included making plan’s provider directories available to the Marketplace for publication online in accordance with guidance from HHS and to potential enrollees in hard copy upon request. In the provider directory, the QHP issuer must identify providers that are not accepting new patients. The QHP issuer must publish an up-to-date, accurate, and complete provider directory, including information on which providers are accepting new patients, the provider's location, contact information, specialty, medical group, and any institutional affiliations, in a manner that is easily accessible to plan enrollees, prospective enrollees, the State, the Exchange, Department of Health and Human Services (HHS), and the Office of Personnel Management (OPM). A provider directory is easily accessible when: the general public is able to view all of the current providers for a plan in the provider directory on the issuer's public Web site through a clearly identifiable link or tab and without creating or accessing an account or entering a policy number; and if the QHP issuer maintains multiple provider networks, the general public is able to easily discern which providers participate in which plans and which provider networks. The purpose of these requirements is to improve the transparency of provider networks for QHP enrollees and our goal with this provision is to ensure that provider directories are accurate, complete, and up-to-date.
State-based Marketplace Public Use Files
The State-based Marketplace Public Use Files (SBM PUFs) are an initiative to provide more information to the public and affected stakeholders (e.g. consumer groups, web-brokers) about a standard set of state-based marketplace performance metrics. These metrics are shared with HHS by SBMs and the National Association of Insurance Commissioners (NAIC). In conjunction with the Federally-facilitated Marketplace Public Use Files (FFM PUFs), the SBM PUFs can be used by researchers and other stakeholders to gain unprecedented insight into the functioning of health insurance markets throughout the United States.
The SBM PUFs provide information to stakeholders on benefits and cost-sharing, rates, plan attributes, business rules, service area, and networks. This large dataset brings together information about the SBMs and the effect of the Affordable Care Act, at a more granular level than survey data, on the state of health insurance coverage in states that have implemented their own Exchanges. At present, many SBMs provide information to the public through regular releases but this information is not widely publicized and does not adhere to a standard set of reported metrics. The SBM PUFs fill this gap and create a single, internally consistent set of data that allows analysis and comparison of information between the SBM states.
Additionally, HHS welcomes efforts by stakeholders to evaluate the differences between SBM markets and FFM markets using this dataset. While fragmentation has characterized the market for commercial health insurance prior to the Affordable Care Act, HHS believes that the combination of commercial health insurance data can help to reduce this fragmentation.
Health Insurance Marketplace Public Use Files
The Health Insurance Marketplace Public Use File (PUF) contains comprehensive data on Qualified Health Plans (QHPs) and Stand-alone Dental Plans (SADPs) whose primary audience is intended for researchers and others interested parties. The files provide detailed information about QHPs and SADPs offered on HealthCare.gov, including information about essential health benefits, plan design, cost-sharing structure, premium rates, rate application rules, and service area. Eight files make up the Marketplace PUF: (1) Benefits and Cost Sharing PUF, (2) Plan Attributes PUF, (3) Rate PUF, (4) Business Rules PUF, (5) Service Area PUF, (6) Network PUF, (7) Plan ID Crosswalk PUF, and (8) Machine Readable PUF. This year, the Centers for Medicare & Medicaid Services (CMS) will release a transparency in coverage PUF that will provide information on claims payment policies and procedures and claims denial information, among other things. The Marketplace PUF shows plan data in States in the Federally-facilitated Marketplaces (FFMs) and State Based Marketplace using the Federal Platform (SBM-FPs), including Multi-State Plans (MSPs).
HRSA National Center for Health Workforce Analysis
The National Center for Health Workforce Analysis (the National Center) informs public and private sector decision-making related to the health workforce by expanding and improving health workforce data, disseminating workforce data to the public, improving and updating projections of the supply and demand for health workers, and conducting analyses of issues important to the health workforce. For more information and to access the reports of the National Center at http://bhpr.hrsa.gov/healthworkforce/
HRSA Ryan White HIV/AIDS Program Annual Client Level Data Report
The inaugural Ryan White HIV/AIDS Program Annual Client Level Data Report (RWHAP CLD) was published in December 2015 and features Ryan White HIV/AIDS Program Services Report (RSR) data on all clients served by the RWHAP during calendar years 2010 through 2014. The publication provides an in-depth look at demographic and socioeconomic factors among clients served as well as selected analyses to measure RWHAP's progress toward achieving key objectives of the National HIV/AIDS Strategy: Updated to 2020. The RSR is the annual reporting instrument that agencies and organizations use to report data related to organizational characteristics, provider/site characteristics, and client characteristics. In 2016, the Ryan White HIV/AIDS Program Supplemental Client-Level Data Report, Eligible Metropolitan Areas (EMA) and Transitional Grant Areas (TGA) was published as an addendum to the RWHAP CLD Report. This addendum features client-level data for all clients served by RWHAP providers within EMAs/TGAs during calendar years 2010 through 2014.
Health Resources Services Administration (HRSA) HIV State Profiles
The State Profiles provide detailed state-level information on the Ryan White HIV/AIDS Program and the HIV/AIDS epidemic in the U.S. The Ryan White HIV/AIDS Program funds primary care and support services for people living with and affected by HIV disease that lack health insurance and financial resources for their care. The program also funds training, technical assistance, and demonstration projects to advance the work of funded agencies. Every year, recipients of Ryan White HIV/AIDS Program funds are required to report to the Health Resources and Services Administration's (HRSA) HIV/AIDS Bureau how those funds have been used to provide services to low-income and underserved individuals and families living with HIV/AIDS.
The implementation of the Affordable Care Act has been a marque example of open government. Building upon improving the transparency about costs and options for health insurance and tools and resources to acquire it, HHS has also developed and is syndicating personalized guidance for ACA- covered clinical preventive services. Myhealthfinder (https://health.gov/myhealthfinder) is a user-centered resource for consumers to get personalized recommendations for clinical preventive services. When users enter their age, sex, and pregnancy status (if applicable), they receive tailored results that include links to related health topics where they can learn about health conditions they could be preventing through these services.
New results are added to myhealthfinder when a clinical recommendation is released or updated. All myhealthfinder content is written in plain language for consumers of all literacy levels, including people with low literacy or low health literacy. Myhealthfinder contributes to open government by bringing to light for all Americans the medical science conducted behind the scenes of the ACA- covered recommended preventive services. The tool personalizes these recommendations by mirroring the outcomes research on clinical preventive services conducted according to sex, age and pregnancy status. It is prominently displayed on healthfinder.gov, an award winning HHS trusted resource known for its user-friendly content and design. Major HHS public facing websites use myhealthfinder as their original source for ACA covered preventive service content including Healthcare.gov, HHS.gov and CDC.gov/prevention.
Myhealthfinder is available in three forms: an API, a full feature code which is easier to incorporate, and a widget which is the simplest option of all. The syndicated content is customizable based on queries and available in either XML and JSON formats.
Myhealthfinder is now the authoritative, go-to resource for consumers to understand the who, what, why, and how of the clinical preventive services that the U.S. Department of Health and Human Services recommends. Myhealthfinder is an ongoing initiative and expected to expand its personalization and syndication.