Health Data Initiative Starter Kit

Making Open Health Data Work For You – A “Starter Kit” For Entrepreneurs, Researchers and Policymakers

Version: January 5, 2012

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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Unleashing the power of data

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.

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:

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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.

Aetna has integrated HHS data on everything from care provider quality to the availability of eldercare support services to the latest medical education information for patients into an “IT cockpit” for nurse case managers in its call centers to help these nurses provide information-rich support for patients.

The Healthline search enginehas ingested massive amounts of data from HHS agencies (e.g., CDC, NIH, CMS, AHRQ, FDA, etc.) and other sources to help make internet search on health topics and issues substantially more reliable, accurate, and helpful.

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:

iTriage, a rapidly growing mobile and web platform that allows patients to make better informed health decisions, has used HHS health facility locator databases to help consumers find nearby care providers that are right for them.

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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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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

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.

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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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Examples of health data resources that are available

Hospital Compare / Nursing Home Compare / Home Health Compare / Dialysis Facility Compare

• New user interface/analytical tool/APIs for health care provider quality Compare data at data.medicare.gov

• Quality and patient satisfaction data available via APIs for thousands of nursing homes, hospitals, home health agencies, and dialysis centers

Provider Quality Compare APIs

• Downloadable databases of quality and patient satisfaction measures for thousands of hospitals and nursing homes

National Plan and Provider Enumeration System (NPPES) Downloadable

File

• Downloadable directory of all federally qualified health centers (FQHCs) across the U.S., which provide comprehensive primary and preventive care to persons of all ages, regardless of ability to pay

FQHC Directory

• Contains FOIA-disclosable health care provider data for providers who have been assigned National Provider Identifiers (NPIs) – e.g., name, business address, phone number, NPI number, provider license number

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* Note: text in light blue hyperlinks to the data set as it’s available via Health.Data.gov

• One-stop access to a growing array of NLM Application Programming Interfaces (APIs) that enable you to access an array of remarkably powerful medical and scientific information resources

National Library of Medicine API Portal • This new service provides patient portals and electronic health record (EHR) systems with customized patient education information in electronic form that maps to the diagnoses, medications, and lab tests about which you are asking. Info is drawn from the National Library of Medicine’s MedlinePlus, an authoritative, up-to-date health information resource for patients, families, and health care providers

Medline Plus Connect

Examples of health data resources that are available

VitalStats

Visible Human Project• Presents complete, anatomically detailed, three-

dimensional representations of the male and female human body

• Interactive online tool for creating and manipulating tables based on birth and perinatal (fetal and infant death) data files. Tabulated data can be graphed or mapped within VitalStats or exported to Excel for further analysis.

TOXMAP: Online Toxicology Maps• Geographic Information System (GIS) that uses

maps of the United States to help users visually explore data from the EPA's Toxics Release Inventory (TRI) and Superfund Programs. TOXMAP helps users create nationwide, regional, or local area maps showing where TRI chemicals are released on-site into the air, water, and ground

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Cancer Incidence - Surveillance, Epidemiology, and End Results (SEER) Registries

• Collects and distributes cancer data from a number of population-based cancer registries (i.e. patient demographics, primary tumor site, first course of treatment, and follow-up for vital status)

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

• API to the ClinicalTrials.gov registry, which provides patients, family members, health care professionals, and members of the public easy access to information on clinical trials for a wide range of diseases and conditions

Household Products Database• This feed describes all new items being recalled

by FDA

• Complementary resource: a downloadable XML file which contains all company-issued recalls for drugs, food, products from 2009 to the present (http://www.data.gov/communities/node/81/data_tools/345)

FDA Recalls

• This database links over 4,000 consumer brands to health effects from Material Safety Data Sheets (MSDS) provided by the manufacturers and allows scientists and consumers to research products based on chemical ingredients.

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• These downloadable files contain the inventory of private insurance carriers, products, and plans 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.

HealthCare.gov Insurance Plan Inventory • Downloadable directories of mental health and

substance abuse treatment centers across the U.S.

Mental Health Services Directory / Substance Abuse Treatment Directory

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

Dietary Supplements Labels Database: brands, ingredients, and references

• Designed to help both the general public and health care providers find information about ingredients in brand-name products, including name, form, active and inactive ingredients, amount of active ingredient/unit, manufacturer/distributor information, suggested dose, label claims, warnings, percentage of daily value, and further label information.

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• MyFood-a-Pedia provides information on the total calories; calories from solid fats, added sugars, and alcohol (extras); MyPyramid food group and subgroup amounts; and saturated fat content of over 1,000 commonly eaten foods with corresponding commonly used portion amounts.

MyFood-a-Pedia

“Blue Button” Data

• The Blue Button download capability enables veterans, Medicare beneficiaries, and members of the military to download electronic copies of their personal health information (via secure web portals)

• Learn more about Blue Button and examine sample file formats at www.bluebuttondata.org

• Collections of cost report data from annual reports filed with CMS by hospitals, skilled nursing facilities, home health agencies, renal dialysis facilities, and hospices

Hospital, Skilled Nursing Facility, Home Health Agency, Renal Dialysis Facility, Hospice Cost Report Data

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

National Health Expenditures - State (Provider), State (Residence),

Age/Gender, Sponsors (Businesses, Households, and Governments), Historical

• Claim-level public use files (“slimmed” for privacy protection) made available for free public download for all major types of care: inpatient, prescription drug, home health, skilled nursing, outpatient procedures, physician, hospice, durable medical equipment

• Helps users understand patterns of utilization of services and cost in the Medicare population

Medicare Claims “Basic Standalone Files”

• The National Health Expenditure Accounts (NHEA) are the official estimates of total health care spending in the United States

QuitNowTXT

• A new health text message library developed by the National Cancer Institute (NCI) that contains interactive and evidence-based smoking cessation text messages targeted to adult smokers

• Text messages offer tips, motivation, encouragement and information tailored to the user’s responses

• Also available at http://smokefree.gov/hp.aspx

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• Provides data on over 1,100 metrics of community health, health care system, and determinants-of-health performance (at whatever level of granularity this data is available – national, state, hospital referral region, county)

• Available both via downloadable files and via web service APIs

Health Indicators Warehouse

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

Assisted Reproductive Technology (ART) Surveillance

• The data collected include patient's diagnosis, type of ART, clinical information pertaining to the ART procedure, and information on pregnancy outcomes.

Wide-ranging Online Data for Epidemiologic Research (WONDER)• Massive array of public health databases re:

births, deaths, disease incidence, health event case reports, demographics, community health

Web-based Injury Statistics Query and Reporting System (WISQARS)• WISQARS is an interactive query system that

provides data on injury deaths, violent deaths, and nonfatal injuries treated in U.S. emergency departments

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Examples of health data resources that are available

Behavioral Risk Factor Surveillance System (BRFSS)

• The Behavioral Risk Factor Surveillance System (BRFSS) is the world’s largest, on-going telephone health survey system, tracking health conditions and risk behaviors in the United States yearly since 1984. Currently, data are collected monthly in all 50 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and Guam.

Your Food Environment Atlas• Contains detailed community-level statistics on

food environment indicators (e.g., access and 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

• The Medical Expenditure Panel Survey (MEPS) is a set of large-scale surveys of families and individuals, their medical providers, and employers across the United States. MEPS is the most complete source of data on the cost and use of health care and health insurance coverage. 

Medicare Expenditure Panel Survey (MEPS)

* Note: text in light blue hyperlinks to the data set as it’s available via Health.Data.gov

We’d love to hear from you!

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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 [email protected]. Thank you!