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Health Data Initiative Starter Kit
1. Making Open Health Data Work For You – A “Starter Kit”
For Entrepreneurs, Researchers and Policymakers
Version: January 5, 2012
2. The purpose of this Health Data Initiative (HDI)
“Starter Kit”
1. Serve as a starting point to help you understand key HHS data
resources which are available
2. Help you understand to whom this data may be useful
3. Help you utilize HHS data as fuel that can power innovative products,
services, features, and insights you create
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3. Unleashing the power of data
These datasets and tools have been gathered from agencies across the Department of
Health and Human Services (and other sources) with the goal of improving health for all
Americans. The data sets are increasingly available in a variety of machine-readable
formats and via Application Programming Interfaces (APIs), making it easier than ever to
consume data.
Just how much information is out there? Consider just a few examples:
MedlinePlus Connect has information for over 900 diseases, illnesses, health
conditions and wellness issues. This service allows health organizations and
health IT providers to link patient portals and electronic health record (EHR) systems
to MedlinePlus, an authoritative up-to-date health information resource for patients,
families, and health care providers.
ClinicalTrials.gov, a registry of federally and privately supported clinical trials,
currently has 115,266 trials with locations in 177 countries.
The Department of Agriculture’s Myfoodapedia provides information on the total
calories and saturated fat content of over 1,000 commonly eaten foods.
Data.Medicare.Gov COMPARE APIs provide detailed quality performance data for
thousands of individual hospitals, nursing homes, home health agencies, and
dialysis providers across the country.
4. How to make data actionable
Open HHS data can help power applications, products, services, and features that help
consumers take control of their health and health care, doctors and nurses provide better
care, and community leaders make better-informed decisions.
Here are some of the many examples of how open data has already been leveraged to do
so:
Aetna has integrated HHS data
The Healthline search engine on everything from care iTriage, a rapidly growing
has ingested massive amounts provider quality to the mobile and web platform that
of data from HHS agencies availability of eldercare support allows patients to make better
(e.g., CDC, NIH, CMS, AHRQ, services to the latest medical informed health decisions, has
FDA, etc.) and other sources to education information for used HHS health facility locator
help make internet search on patients into an “IT cockpit” for databases to help consumers
health topics and issues nurse case managers in its call find nearby care providers that
substantially more reliable, centers to help these nurses are right for them.
accurate, and helpful. provide information-rich support
for patients.
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5. Where to find the data: Health.Data.gov, the one-stop
place to get all of our free, publicly available data
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6. Examples of health data resources that are available
Listed below are just some of the key health data sets available that could be utilized in
applications/services that help care providers, consumers and communities. See pages following for brief
summaries of each data set. And check out Health.Data.gov for a much more comprehensive listing of
available data resources.
If you are building an app/service for…
Type of Data Set Providers Consumers Community
Provider Quality COMPARE APIs at data.medicare.gov
Hospital / Nursing Home / Home Health / Dialysis Compare
FQHC (Federally Qualified Health Center) Directory
National Plan and Provider Enumeration System (NPPES) Downloadable File
National Library of Medicine API Portal
MedlinePlus Connect
Clinicaltrials.gov API
NIH’s Visible Human Project
NLM’s TOXMAP: Online Toxicology Maps
VitalStats
Cancer Incidence – Surveillance, Epidemiology, and End Results (SEER)
Registries
FDA Recalls (drug, food and product)
HealthCare.gov Insurance Plan Directory
Mental Health Services Directory/Substance Abuse Treatment Center Directory
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7. Examples of health data resources that are available
If you are building an app/service for…
Data Set Providers Consumers Community
Household Products Database
USDA’s MyFood-a-Pedia
“Blue Button” data (the ability for veterans, Medicare beneficiaries and active
duty military to download their own personal health information)
Dietary Supplements Labels Database: brands, ingredients and references
Hospital, Skilled Nursing Facility, Home Health Agency, Renal Dialysis Facility,
Hospice Cost Report Data
National Health Expenditures
Medicare Claims “Basic Standalone Files”
Health Indicators Warehouse
QuitNowTxt SMS Library
Medical Expenditure Panel Survey (MEPS)
Wide-ranging Online Data for Epidemiologic Research (WONDER)
Web-based Injury Statistics Query and Reporting System (WISQARS)
Your Food Environment Atlas
Behavioral Risk Factor Surveillance System (BRFSS)
Assisted Reproductive Technology (ART) Surveillance
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8. Examples of health data resources that are available
* Note: text in light blue hyperlinks to the data set as it’s available via Health.Data.gov
Provider Quality Compare APIs FQHC Directory
• New user interface/analytical tool/APIs for health • Downloadable directory of all federally qualified
care provider quality Compare data at health centers (FQHCs) across the U.S., which
data.medicare.gov provide comprehensive primary and preventive
• Quality and patient satisfaction data available via care to persons of all ages, regardless of ability
APIs for thousands of nursing homes, hospitals, to pay
home health agencies, and dialysis centers National Plan and Provider Enumeration
System (NPPES) Downloadable File
Hospital Compare / Nursing Home Compare / Home • Contains FOIA-disclosable health care provider
Health Compare / Dialysis Facility Compare data for providers who have been assigned
• Downloadable databases of quality and patient National Provider Identifiers (NPIs) – e.g., name,
satisfaction measures for thousands of hospitals business address, phone number, NPI number,
and nursing homes provider license number
Medline Plus Connect
National Library of Medicine API Portal
• This new service provides patient portals and
• One-stop access to a growing array of NLM electronic health record (EHR) systems with
Application Programming Interfaces (APIs) that customized patient education information in
enable you to access an array of remarkably electronic form that maps to the diagnoses,
powerful medical and scientific information medications, and lab tests about which you are
resources asking. Info is drawn from the National Library
of Medicine’s MedlinePlus, an authoritative, up-
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to-date health information resource for patients,
families, and health care providers
9. Examples of health data resources that are available
* Note: text in light blue hyperlinks to the data set as it’s available via Health.Data.gov
ClinicalTrials.gov API API TOXMAP: Online Toxicology Maps
• API to the ClinicalTrials.gov registry, which • Geographic Information System (GIS) that uses
provides patients, family members, health care maps of the United States to help users visually
professionals, and members of the public easy explore data from the EPA's Toxics Release
access to information on clinical trials for a wide Inventory (TRI) and Superfund Programs.
range of diseases and conditions TOXMAP helps users create nationwide,
regional, or local area maps showing where TRI
chemicals are released on-site into the air,
Visible Human Project water, and ground
• Presents complete, anatomically detailed, three-
dimensional representations of the male and
Cancer Incidence - Surveillance,
female human body
Epidemiology, and End Results (SEER)
Registries
VitalStats
• Collects and distributes cancer data from a
• Interactive online tool for creating and number of population-based cancer registries
manipulating tables based on birth and perinatal (i.e. patient demographics, primary tumor site,
(fetal and infant death) data files. Tabulated data first course of treatment, and follow-up for vital
can be graphed or mapped within VitalStats or status)
exported to Excel for further analysis.
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10. Examples of health data resources that are available
* Note: text in light blue hyperlinks to the data set as it’s available via Health.Data.gov
FDA Recalls Household Products Database
• This feed describes all new items being recalled • This database links over 4,000 consumer brands
by FDA to health effects from Material Safety Data
• Complementary resource: a downloadable XML Sheets (MSDS) provided by the manufacturers
file which contains all company-issued recalls for and allows scientists and consumers to research
drugs, food, products from 2009 to the present products based on chemical ingredients.
(http://www.data.gov/communities/node/81/data_
tools/345)
Mental Health Services Directory / Substance
Abuse Treatment Directory
HealthCare.gov Insurance Plan Inventory
• Downloadable directories of mental health and
• These downloadable files contain the inventory substance abuse treatment centers across the
of private insurance carriers, products, and plans U.S.
currently listed in HealthCare.gov – information
collected from 1000 issuers of individual and
small group insurance across all 50 states and
the District of Columbia.
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11. Examples of health data resources that are available
* Note: text in light blue hyperlinks to the data set as it’s available via Health.Data.gov
MyFood-a-Pedia Dietary Supplements Labels Database:
• MyFood-a-Pedia provides information on the brands, ingredients, and references
total calories; calories from solid fats, added • Designed to help both the general public and
sugars, and alcohol (extras); MyPyramid food health care providers find information about
group and subgroup amounts; and saturated fat ingredients in brand-name products, including
content of over 1,000 commonly eaten foods name, form, active and inactive ingredients,
with corresponding commonly used portion amount of active ingredient/unit,
amounts. manufacturer/distributor information, suggested
dose, label claims, warnings, percentage of daily
“Blue Button” Data value, and further label information.
• The Blue Button download capability enables
veterans, Medicare beneficiaries, and members Hospital, Skilled Nursing Facility, Home
of the military to download electronic copies of Health Agency, Renal Dialysis Facility,
their personal health information (via secure web Hospice Cost Report Data
portals) • Collections of cost report data from annual
• Learn more about Blue Button and examine reports filed with CMS by hospitals, skilled
sample file formats at www.bluebuttondata.org nursing facilities, home health agencies, renal
dialysis facilities, and hospices
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12. Examples of health data resources that are available
* Note: text in light blue hyperlinks to the data set as it’s available via Health.Data.gov
Medicare Claims “Basic Standalone Files” National Health Expenditures - State
• Claim-level public use files (“slimmed” for privacy (Provider), State (Residence), Age/Gender,
protection) made available for free public Sponsors (Businesses, Households, and
download for all major types of care: inpatient, Governments), Historical
prescription drug, home health, skilled nursing, • The National Health Expenditure Accounts
outpatient procedures, physician, hospice, (NHEA) are the official estimates of total health
durable medical equipment care spending in the United States
• Helps users understand patterns of utilization of
services and cost in the Medicare population Health Indicators Warehouse
• Provides data on over 1,100 metrics of
community health, health care system, and
QuitNowTXT determinants-of-health performance (at whatever
level of granularity this data is available –
• A new health text message library developed by
national, state, hospital referral region, county)
the National Cancer Institute (NCI) that contains
interactive and evidence-based smoking • Available both via downloadable files and via
cessation text messages targeted to adult web service APIs
smokers Assisted Reproductive Technology (ART)
• Text messages offer tips, motivation, Surveillance
encouragement and information tailored to the • The data collected include patient's diagnosis,
user’s responses type of ART, clinical information pertaining to the
• Also available at http://smokefree.gov/hp.aspx ART procedure, and information on pregnancy
outcomes.
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13. Examples of health data resources that are available
* Note: text in light blue hyperlinks to the data set as it’s available via Health.Data.gov
Medicare Expenditure Panel Survey (MEPS) Web-based Injury Statistics Query and
• The Medical Expenditure Panel Survey (MEPS) Reporting System (WISQARS)
is a set of large-scale surveys of families and • WISQARS is an interactive query system that
individuals, their medical providers, and provides data on injury deaths, violent deaths,
employers across the United States. MEPS is and nonfatal injuries treated in U.S. emergency
the most complete source of data on the cost departments
and use of health care and health insurance
Behavioral Risk Factor Surveillance System
coverage.
(BRFSS)
Wide-ranging Online Data for Epidemiologic
Research (WONDER) • The Behavioral Risk Factor Surveillance System
(BRFSS) is the world’s largest, on-going
• Massive array of public health databases re:
telephone health survey system, tracking health
births, deaths, disease incidence, health event
conditions and risk behaviors in the United
case reports, demographics, community health
States yearly since 1984. Currently, data are
Your Food Environment Atlas collected monthly in all 50 states, the District of
• Contains detailed community-level statistics on Columbia, Puerto Rico, the U.S. Virgin Islands,
food environment indicators (e.g., access and and Guam.
proximity to grocery stores, food prices, etc.) –
providing a spatial overview of a community’s
ability to access healthy food and its success in
doing so
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14. We’d love to hear from you!
We’d love to hear your feedback and questions about this Health Data Initiative starter kit and about
Health.Data.gov in general. Please contact us with questions, suggestions, or comments at
Healthdata@hhs.gov. Thank you!
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