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 available2. Help you understand to whom this data may be useful3. Help you utilize HHS data as fuel that can power innovative products, services, features, and insights you create 2

Unleashing the power of dataThese datasets and tools have been gathered from agencies across the Department ofHealth and Human Services (and other sources) with the goal of improving health for allAmericans. The data sets are increasingly available in a variety of machine-readableformats and via Application Programming Interfaces (APIs), making it easier than ever toconsume 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.

How to make data actionableOpen HHS data can help power applications, products, services, and features that helpconsumers take control of their health and health care, doctors and nurses provide bettercare, and community leaders make better-informed decisions.Here are some of the many examples of how open data has already been leveraged to doso: Aetna has integrated HHS dataThe Healthline search engine on everything from care iTriage, a rapidly growinghas ingested massive amounts provider quality to the mobile and web platform thatof 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, hasFDA, etc.) and other sources to education information for used HHS health facility locatorhelp make internet search on patients into an “IT cockpit” for databases to help consumershealth topics and issues nurse case managers in its call find nearby care providers thatsubstantially more reliable, centers to help these nurses are right for them.accurate, and helpful. provide information-rich support for patients. 4

Where to find the data: Health.Data.gov, the one-stopplace to get all of our free, publicly available data 5 5

Examples of health data resources that are availableListed below are just some of the key health data sets available that could be utilized inapplications/services that help care providers, consumers and communities. See pages following for briefsummaries of each data set. And check out Health.Data.gov for a much more comprehensive listing ofavailable data resources. If you are building an app/service for…Type of Data Set Providers Consumers CommunityProvider 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)  RegistriesFDA Recalls (drug, food and product)  HealthCare.gov Insurance Plan Directory   Mental Health Services Directory/Substance Abuse Treatment Center Directory    6

Examples of health data resources that are available If you are building an app/service for… Data Set Providers Consumers CommunityHousehold 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 DataNational 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   7

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 FileHospital 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- 8 to-date health information resource for patients, families, and health care providers

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 EPAs 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. 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 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. 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 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 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 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 patients 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. 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 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 13

We’d love to hear from you!We’d love to hear your feedback and questions about this Health Data Initiative starter kit and aboutHealth.Data.gov in general. Please contact us with questions, suggestions, or comments atHealthdata@hhs.gov. Thank you! 14

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Health Data Initiative Starter Kit

by HHS-HealthData on Jun 04, 2012

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