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.
Comparing U.S. health care system with other countries
The OECD (Organization for Economic Cooperation and Development) maintains a database that enables comparisons between the U.S. and other developed countries on a range of health statistics, including the pharmaceutical market and health care quality.
Tax provisions of the ACA (January 2018)
This IRS page has links to data related to the tax provisions of the ACA for individuals, businesses, government and insurers.
Rural hospital closures
The Sheps Center at the University of North Carolina has data and tracking tools for rural hospital closures by state.
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.
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.
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:
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 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.
The 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
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.
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.)
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.
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:
Reporter Tony Leys, of the Des Moines Register, describes how he examined how much charity care is provided by hospitals in Iowa in return for the substantial tax breaks they get for operating as nonprofit organizations. Leys, a 2011-12 Regional Health Journalism Fellow, was able to compare local hospitals, using new IRS reporting requirements for nonprofit hospitals, and estimated how local property tax revenue was affected by the tax-exempt hospital properties in those areas.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.”
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.
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.
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.
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.