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Data

We are working to gather raw data for your own analysis and to pinpoint trustworthy outside sources of data, analysis and summaries that you can use in your reporting. Below are data sources that can assist you in covering health reform.

HIX Compare datasets examine every marketplace plan from 2015 to 2016

The Robert Wood Johnson Foundation  has created free, machine-readable data files on all ACA plans for 2015 and 2016 – on and off exchange in the individual market, and the small group market. It’s a comprehensive look at the health plans – premiums, deductibles, co-pays, benefits, etc. – though not at the people who get covered.

Guroo.com

This is a new free and pretty user friendly source of price information based on an extensive (billions) set of insurance claims from commercial health insurers compiled by the Health Care Cost Institute (HCCI). You can search for a medical procedure, and get the national cost average as well as costs for your region. It also has quality and consumer information.This is a new free and pretty user friendly source of price information based on an extensive (billions) set of insurance claims from commercial health insurers compiled by the Health Care Cost Institute (HCCI). You can search for a medical procedure, and get the national cost average as well as costs for your region. It also has quality and consumer information.

The Shorenstein Center’s guide to health and science databases

The Shorenstein Center on Media, Politics and Public Policy at the Harvard Kennedy School has assembled a guide to databases, with a focus on health and public health. Their list includes both free (open source) and paid access databases. Some, like PubMed or Public Library of Science (PLoS), are well known to health journalists but others, like the Social Science Research Network or HighWire, may not be. This is a comprehensive list, with descriptions, and it’s helpful. 

Marketplace utilization

CMS has released Health Insurance Marketplace Public Use files giving detailed information about the marketplace: Qualified health plan -eligible, remaining uninsured population ranked by city or metropolitan area.

Utilization of products, services by Medicare beneficiaries

CMS has released a data set on Provider Utilization and Payment Data: Referring Durable Medical Equipment, Prosthetics, Orthotics and Supplies (DMEPOS) Public Use File. It contains information on products and services provided to Medicare beneficiaries ordered by physicians and other health care professionals.

CMS Releases County-Level Marketplace Data 

CMS has released new information on Qualified Health Plan selections by county for the 37 states that use the HealthCare.gov platform (including the Federally-facilitated Marketplace, State Partnership Marketplaces and supported State-based Marketplaces) for the Marketplace open enrollment period from November 15, 2014 through February 15, 2015, including additional special enrollment period (SEP) activity reported through February 22, 2015.  

The data represent the number of unique individuals who have been determined eligible to enroll in a Qualified Health Plan and had selected a Marketplace plan by February 15, 2015 (including SEP activity through February 22). CMS released the following tables:

All of the above data assets are also catalogued on Healthdata.gov

NAIC Insurance Data

The NAIC offers publicly available data in PDF form on insurers’ financial performance.

Readmissions Reduction Program

CMS has published updated data about hospital readmission rates. Under the ACA, hospitals with high rates of 30-day readmissions for Medicare patients with specified conditions are penalized. Scroll down to the end of this document for the data.

POS (Provider of Service)

This POS (Provider of Service) file contains data on health care providers that take part in Medicare, and what services they provide.  It’s updated quarterly.

Nationwide data on Hospital-Associated Infections (HAIs)

Most US hospitals will never see a case of Ebola, but they face other more common – and potentially lethal – infections every day. Healthcare-Associated Infections (HAIs) are "major causes of morbidity and mortality in the United States," according to the CDC. From 2009 through 2011, the CDC  tracked nosocomial infections in the HAI and Antibiotic Prevalence Use Survey, a three-phase, point-prevalence nationwide survey. Also, visit the CDC's Safe Healthcare blog for relevant medical studies and updates on infection-prevention quality in hospitals around the country.

Health of minority populations

The ACA requires federal health data collection and analysis, including demographic data aimed at better understanding disparities. The HHS Office of Minority Health has detailed reports on five racial and ethnic groups.

The RWJF DataHub

The Robert Wood Johnson Foundation's DataHub tracks state-level data and allows users to customize and visualize facts and figures on key health and health care topics. It has a broad range of data sets pertaining to health coverage, status and reform. 

Use data to cover the Affordable Care Act

Katherine HempsteadThe Robert Wood Johnson Foundation has six databases on its "Reform by the Numbers" website that can be useful for reporters covering health care. In an exclusive briefing at an AHCJ New York chapter meeting in June 2014, the Foundation's Katherine Hempstead, Ph.D., discussed the highlights of the databases.

The databases can answer many questions, such as whether consumers are having trouble paying their sky-high deductibles or whether waiting lines are growing at doctors’ offices. Want to know how your state exchange differs from others? This data can help. Hempstead also offers ideas for stories that can be mined from the data no matter your technical abilities.

State Exchange Markets

The State Exchange Markets tool, from the Center on Budget and Policy Priorities, has a preliminary summary of policies and data collected from other research data sets and Marketplace materials as well as from information provided by state advocates and Marketplace staff.

Health Insurance Exchange (HIX) Compare

This dataset, available from the Robert Wood Johnson Foundation,provides information on benefit design and cost sharing for health plans offered in all 50 states and the District of Columbia. Specifically, the dataset includes data on premiums, network composition, deductibles, out-of-pocket limits, and copayment and coinsurance amounts.

Tracking Americans’ experiences in the health insurance marketplaces

The Commonwealth Fund has developed an interactive data set based on its research about people shopping for health coverage in the exchanges.

How health IT is changing health care

The Office of National Coordinator for Health IT has databases about providers and use of technology and public health measures.

Trends in Insurance Coverage, Source of Private Coverage Among Young Adults

This report shows that, since September 2010 – when adults aged 19–25 were able to obtain dependent private health insurance coverage through a provision of the ACA – the percentage of young adults with private insurance increased and the percentage without insurance decreased. The increase in the percentage with private insurance occurred at about the same time (January–June 2011) as a temporary increase in the percentage of privately insured young adults who had been uninsured at some time in the past 12 months. This suggests that those newly insured were previously uninsured or had a period of no insurance in the past year. After this spike, the percentage of young adults with a period of no insurance did not return to pre-2011 levels but rather declined to levels consistent with slightly older adults. The data comes from the National Health Interview Survey, 2008–2012.

Local Health

Localhealthdata.org  (via Washington University’s Health Communication Research Laboratory). This includes U.S. government health data,  data from numerous health organizations (i.e. American Heart Association), that can be searched by locality (state, city, county) analyzed, and easily turned into charts.  (Not all the underlying raw data can be downloaded, but it includes sources of the information that may be able to provide it.)

Community health status & Medicare

The Health Indicators Warehouse, was updated this fall. It now includes 174 CMS indicators with data from 2007-10 focusing on community health status. It has data on Diabetes Medicare beneficiaries, Heart attack Medicare beneficiaries, Depression Medicare beneficiariesFederally Qualified Health Center and Rural Health Clinic visits, Asthma for Medicare beneficiaries and Hypertension for Medicare beneficiaries. For more about the data, see “Health Indicators Warehouse Updates with 4-year Estimates of CMS Medicare Data.”

County health rankings

A collaboration between the University of Wisconsin Population Health Institute and the Robert Wood Johnson Foundation, this is a rich source of data about health at the local level – and who is doing what to improve it. You can get local story ideas by tracking the grantees – who is doing what. And you can dive into a whole lot of data through several links on the site, and particularly on this page.

Then you can go even deeper with the data drill-down guide.

The site looks at national and local trends regarding mortality and premature death, health related quality of life, as well as factors such as air pollution, smoking rates, obesity and teen births.

Leapfrog Group for Patient Safety

This is a group backed by large employers that gathers safety and quality data (from voluntary surveys) and uses it to promote higher quality, safer, more efficient health care 

Leapfrog has its own version of hospital safety data – searchable by hospital and by procedure. The caveat is that hospitals submit information voluntarily and hospitals must pay the group to use its designation in marketing materials, but it can still be a useful tool. See this blog post about the limitations of so-called "hospital report cards."

Nonprofit hospitals' IRS 990s

One little-known element of the health care reform law sets new rules for nonprofits. They are required to assess community needs, and inform patients of charity policies. Some legislators want tougher rules and oversight to make sure they are providing enough service to the community to justify the tax break.

A number of reporters have delved into the issue of charity care and community benefit at nonprofit hospitals by using data from their IRS 990 forms. For example:

Financial data from IRS 990 forms about nonprofit hospitals: AHCJ has obtained information on the finances of nonprofit hospitals across the country from GuideStar, which compiles and disseminates financial documents from most U.S. nonprofits. This information is from tax year 2009. AHCJ hopes to update this information annually.

Rate reviews

The Affordable Care Act expands review of proposed insurance premium increases – but does not allow Washington to reject increases. Some states have rate-setting powers. Others merely review the rates but cannot reject them.  If states don’t review the rates in the individual or small group market, the federal government can. Up to $250 million will be available to states to help beef up review.  Here is a list of the states that are conducting reviews, and the states where the federal government is stepping in. (Source: CCIIO/HHS, updated Feb. 16, 2012)

Effects of Selected Major Tax Expenditures from 2013 to 2022

Sometimes during debates over health policy you hear the term "tax exclusion." That's referring to the tax breaks for health insurance that people get through their (or a family member's) employment. The exclusion – or non-taxation of that benefit – is the single largest tax expenditure in the individual income tax code. It is more than the tax breaks for mortgages on personal residences, more than the breaks for state and local taxes, or for charities. In other words, it's a big pot of money that deficit-cutters may look at, but it's also politically hard to change. The Congressional Budget Office estimates the exclusion will equal 1.8 percent of GDP between 2013 and 2022.

Employee benefits

EBRI (the Employer Benefit Research Institute) puts out data briefs ad summaries, but they often contain links to government databases that you can break down yourself.

For instance, here from the EBRI Databook provides an on overview/introducti on to  employee benefits (including but not limited to health care).  For those of you who are not comfortable with the data, it’s all summarized in this  10 page introductory  chapter,w ith links that take you to other briefs. For those of you who want to dive more deeply into some of the federal data bases, there are links and date is a available in both PDF and Excel tables.  For instance here are the “age pyramids” showing  how the population is aging, and the relative sizes of older and younger cohorts.  It’s also broken down by region, so, for instance you can look at the sunbelt versus the rust belt.

The chapter also provides links to lots of tables on employment trends – including women of childbearing age, veterans and the disabled.

Health care expenditures and utilization

The Agency for Healthcare Research and Quality offers data about medical expenditures, health care costs and utilization, broken down by state and by payer. There's also data about health care disparities and state snapshots.

The Medical Expenditure Panel Survey (MEPS) gives details on what health services Americans use, how  frequently, what they cost, and how they are paid for. The U.S. Agency for Healthcare Quality and Research compiles data and sends out summaries, with data broken down by state. See Statistical Brief #329: State Differences in the Cost of Job-Related Health Insurance, 2010. The MEPS website has updated 2010 health insurance data by state.

Here are some highlights from the agency’s News and Numbers (July 2011) about state differences in the cost of job-related health insurance:

  • Nationwide, private-sector employees with single coverage contributed 21 percent of the cost of their health insurance. Employees who had family coverage paid 27 percent,

  • Health insurance premiums nationwide averaged $4,940 for single coverage and $13,871 for family coverage in 2010.

  • Among the 10 largest states, the annual cost of single coverage ranged from $4,669 in Ohio to $5,220 in New York and family coverage ranged from $13,083 in Ohio to $15,032 in Florida.

  • Some 18 percent of employees with single coverage and 10 percent of employees with family coverage were not required to pay for any part of their employer-sponsored health insurance.

  • Among the 10 largest states in 2010, employees who didn’t have to pay premiums for single coverage ranged from 12 percent in Illinois to 24.5 percent in California, while the range for employees with family coverage was 3 percent in Florida to 17.5 percent in Pennsylvania. 

Hospital and provider utilization from the Kaiser Family Foundation: This tool includes data about hospitals, nursing homes, federally qualified health and rural health centers, physicians, non-physician providers and health care employment. See how the indicators compare across the states. Results will be shown as a table, map, or trend graph as available.

Inpatient and outpatient services, utilization and cost

CMS has released a lot of data on inpatient and outpatient services, utilization and cost. Here are some links to the data and some links to tools to help you use and visualize it.

Health care costs

We often try to provide databases that you can download. While this doesn’t quite fall into that category, The Wall Street Journal did create an interactive map with charts and tables that give you state-by-state information on health care costs.

Essential health benefits

In 2014, all health plans, in and out of the exchanges, will have to offer "essential benefits," or a minimal, reliable comprehensive level of coverage. This chart illustrates the basic categories of coverage, although plans can offer more, and consumers will have choices and tradeoffs. The ACA law itself does not define the essential benefits; HHS will, with advice from the Institute of Medicine and other sources.

Improving hospital quality

Health reform includes lots of initiatives to improve hospital quality and bring down Medicare costs. Here’s one area that some experts want to address. This chart from the Agency for Health Research and Quality (AHRQ) shows that the number of hospital stays principally for septicemia (sometimes colloquially called “blood poisoning) more than doubled between 2000 and 2009 (337,100 to 836,000 admissions) – making it the sixth most common reason for hospitalization in 2009. The most common reason (one out of five hospitalizations) was because of a complication from a device, implant, or graft. The in-hospital death rate was 16 percent in 2009 – more than eight times as high as for all other hospital stays.

Evaluate the quality of hospitals in your area
State-by-state breakdown of how patients rate hospitals, according to the HHS Hospital Consumer Assessment of Health Providers and Systems

Graphic via OpenHeatMap

AHCJ offers hospital mortality and readmission data, which will allow you to tell your audience whether a hospital's rates are in line with national averages, significantly better or significantly worse. A special AHCJ webinar provided an introduction to this data, including ideas on how to use the data in your own area.

The federal survey that reflects patients' perspectives of hospital care has been updated on the AHCJ website. The spreadsheets that AHCJ offers allow you to analyze the top-rated hospitals — or lowest-rated hospitals — in your area. 

Scorecards

The Commonwealth Fund’s Health System Data Center breaks down lots of state and local data, and includes searchable data on child health and long-term care.

These files are PDFs of charts, not downloadable Excel files (although their communications shop can probably help if you are looking for something specific). But there are queries you can fill in, and the site will generate specific charts and comparisons for you.

State scorecards

Child health scorecards

Local scorecards

State scorecard data tables

State profiles and scorecards

Long-term scorecards

Small business tax credit

The Affordable Care Act provides a temporary tax credit for small employers – defined as having 25 full-time workers or the equivalent – with average wages less than $50,000. But not many know about it, or that they may be eligible, according to the survey. The White House has estimated that up to 4 million small businesses may be eligible for credits, which are meant to defray part of the insurance costs

This Kaiser Family Foundation report on employer health benefits found that 29 percent of firms with fewer than 50 employees that offer health coverage tried to find out if they were eligible, and 65 percent did not. Of small businesses that did not offer insurance, half said they were aware of the tax credit and 48 percent said they did not know about it. Of those that were aware, only 13 percent said the availability of a credit had not led them to consider whether to start offering insurance to their workers. Read more: Do small businesses in your area know about tax credit for offering coverage?

Workforce

According to the federal Agency for Healthcare Research and Quality, fewer than one out of three physicians in direct patient care are in primary care – family physicians, general practitioners, general internists, pediatricians and geriatricians. (The primary care count is lower than the numbers cited by the AMA, and the AHRQ fact sheet explains why).

Americans made nearly 956 million visits to office-based physicians in 2008. Just over half – 51.3 percent – were to primary care physicians.

The number of nurse practitioners and physicians assistants has risen, but it may come as a surprise to learn that the AHRQ-commissioned research found that just over half (52 percent ) of the 106,073 nurse practitioners and just 43 percent of the 70,383 physician assistants were practicing primary care. The rest were in specialty settings.

Data files from the National Center for Health Statistics

The National Center for Health Statistics offers downloadable public-use data files through the Centers for Disease Control and Prevention's FTP file server. Data sets, documentation and questionnaires from NCHS surveys and data collection systems are available.

Community Health Data Initiative

The U.S. Department of Health and Human Services and the Institute of Medicine launched this initiative to help consumers and communities get more value out of the nation's wealth of health data. It includes a number of web tools, reports and downloadable data.

Medicare/Medicaid

HHS provides a CMS resource on historic, current, and projected data on Medicare and Medicaid – enrollment, spending, use. It also has data on budget, administrative and operating costs, providers and suppliers.

A statistical supplement offers a wealth of Medicare and Medicaid spending data. HHS says it includes “charts and tables showing health expenditures for the entire U.S. population, characteristics of the covered populations, use of services, and expenditures under these programs.”

CMS Chronic Conditions Dashboard

This lets you compile data on prevalence of 15 common chronic conditions – including depression -- how much they costs, who they affects, and state by state burdens.

RWJF Data Hub

This is a user friendly RWJF data hub that you can explore and customize under the following six areas:

  1. Covering the Uninsured

  2. Health Care Costs

  3. Health Care Quality, Value and Equality

  4. Healthier Lifestyles

  5. Public Health

  6. Social Determinants of Health

CMS DataNavigator

While the AHCJ website has data available on Medicare and Medicare, here’s a menu-driven search tool that can help you search and navigate more government health data. It will retrieve data sets or statistical reports.

Hospital readmission rates

In April 2013, the Agency for Health Care Research and Quality released updated data on 30-day hospital readmission rates for 2010. They are available by procedure (PDF file, 198 KB; HTML) and by diagnosis (PDF file, 319 KB; HTML). An infographic, 30-Day Readmission Rates to U.S. Hospitals, 2010, is available in PDF, JPEG and text formats. Related: Reporters can use hospital readmission data to explore key issues

Tip sheets on analyzing health data

Finding patterns and trends in health data: Pivot tables in spreadsheets

Excel pivot tables are a powerful way to organize, interpret and manipulate numerical data. In this tip sheet, reporters will learn the skills necessary to apply these tables in real-world situations, including analyzing the Nursing Home Compare data.

Excel tutorialIntro to investigating health data using spreadsheets

This tutorial will give you a jumpstart on using spreadsheets to investigate health data. While it's important to remember that a spreadsheet can give you a lead but can't replace your news judgment, this will help you navigate around spreadsheets, understand some basic references and learn some good practices in dealing with data.

Updated hospital data allows reporters to identify ongoing problems

The Centers for Medicare and Medicaid Services has been reporting patient survival rates for hospitals across the United States for four years now and hospital readmission rates for three. While some journalists may have a been-there-done-that reaction to yet another round of data, the latest release has important information for your readers, viewers and listeners. After several years, a surprising number of hospitals can't seem to improve – and an elite group has been able to maintain their excellence.