The right to know: It’s a concept that underpins all journalism, and nowhere is it more important than in health care and medicine. Patients have a right to know what will keep them healthy and what will make them sick. Citizens have a right to know how effectively their government protects and serves those who depend on it. For health care journalists that means heavy responsibilities – and sometimes daunting challenges. Through its Right to Know Committee, AHCJ advocates for openness and provides resources for members striving to shed light on complex topics.
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Public records
Reporters can encounter obstacles in obtaining documents that reveal what the government is doing, or failing to do – on the local, state and federal levels. Some public record laws are weak, and they may also be poorly enforced. Here are resources and stories to guide you in accessing public records.
KEY RESOURCES
Guidance on the release of information concerning deaths, epidemics or emerging diseases
Recommendations developed by public health officials, health care journalists and public health information officers, co-sponsored by the Association of State and Territorial Health Officials, the National Association of County and City Health Officials and the Association of Health Care Journalists in October 2010.
For successful information requests, be familiar with guidelines for HHS public affairs staff
This blog post has directions to make information requests from the U.S. Department of Health and Human Services, as well as contact information for senior media officials to whom reporters can directly appeal if they don't receive answers in a timely manner. See the HHS Guidelines on the Provision of Information to the News Media.
On the health beat, public records can be a lifeline
In recognition of Sunshine Week 2018, Michael Morisy, founder of MuckRock, a nonprofit that works for a more informed democracy, wrote for AHCJ some tips about using freedom of information laws to get great stories while juggling everything else you need to get done.
Shining a light on communities through public information
In recognition of Sunshine Week 2018, Amelia Nitz, communications manager for the Reporters Committee for Freedom of the Press, wrote for AHCJ about open records laws and how her organization is prepared to help reporters obtain public records.
James Madison Project offers pro bono legal, professional advice on FOIA
An attorney and a longtime D.C. reporter are offering their services to journalists encountering difficulty with FOIA requests.
REPORTERS USING PUBLIC RECORDS
Six lessons from a five-year FOIA battle (September 2016)
Philip Eil describes his fight to obtain evidence from a case in which a doctor was convicted of a massive prescription drug dealing scheme.
Tips on prying loose records using FOIA requests, lawsuit (September 2015)
Fred Schulte’s investigation into problems with Medicare Advantage plans took a lot of digging, filing of FOIA requests and ultimately a lawsuit to force CMS to turn over certain documents.
Should the state disclose which Maine schools face disease outbreaks? (July 2015)
Reporter requests information about schools, camps and other sites where infectious diseases broke out during the last school year.
Investigation reveals dental board’s lack of transparency (March 2015)
Reporting on lack of transparency within Arizona’s State Board of Dental Examiners.
Calif. reporter finds dearth of public records on assisted-living homes (September 2014)
Reporter Deborah Schoch shares tips on investigating assisting-living and nursing homes.
Making information on dental complaints accessible in California (September 2014)
Report on dental complaints that pile up outside public view.
How one reporting team used public records to find questionable Medicare Advantage spending (July 2014)
Fortunately, the government can’t run a program as big, complex and controversial as Medicare Advantage without putting a ton of documents and other information online.
Extensive document requests yield true cost of Illinois’ PR campaign for insurance coverage (July 2014)
Carla K. Johnson covered a multimillion-dollar PR contract to promote insurance coverage under the Affordable Care Act in Illinois.
Miami journalist reports on the challenges in getting price transparency data in South Florida (October 2014)
Difficulties in getting data on price transparency.
How a secretive committee recommends how much physicians should be paid (December 2014)
Understand how the Relative Value Update Committee works.
Beat reporter uncovers FDA's failure to take action about contaminated products (June 2011)
What happens when the FDA concludes contaminated health care products don't pose "an imminent health hazard?"
Reporter runs into wall requesting FDA's public records of financial disclosures (February 2011)
John Fauber of the Milwaukee Journal Sentinel describes his months of fruitless efforts to obtain public records from the FDA.
Reporter documents surgical errors through public records (November 2007)
Understanding the cost of medical errors with public records.
TIPS ON OBTAINING, USING PUBLIC RECORDS
Use state public records laws to cover these aspects of health exchanges (March 2014)
Katie Kerwin McCrimmon has tips on getting public records and using them to cover state exchanges.
Journalists discuss quote approval, emailed questions, access to experts (March 2013)
Blog post about a panel on access to information at Health Journalism 2013
Some key points about public records requests (April 2012)
Charles Ornstein offers some useful tips to make records requests easier and more productive.
FOI Laws in Action (April 2012)
Charles Davis gives examples of how reporters have used state records laws and FOIA, and provides other sources of public information.
Reporters urged to insist on response from government agencies (September 2010)
Felice Freyer’s instructive experience with the FDA.
ADDITIONAL RESOURCES
SF chapter presents workshop on FOI, public records (October 2009)
Panel of experts discusses FOI, the California Records Act, strategies for obtaining records, and how to use the information effectively.
Health Journalism 2008: Under pressure - FDA oversight, funding, effectiveness (April 2008)
Reporters at the annual conference queried Susan Winckler, FDA chief of staff, about the agency's responsiveness.
Reporter offers testimony to FDA committee about agency's communication policies (March 2008)
Kathryn Foxhall testified about the FDA's communications policies at the first meeting of FDA’s Risk Communications Advisory Committee.
State-by-state Open Government Guide, from the Reporters Committee for Freedom of the Press
Information on public records laws and open meeting laws from all 50 states.
Reporters Committee for Freedom of the Press
A nonprofit association dedicated to providing free legal assistance to journalists since 1970.
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HIPAA
The Health Insurance Portability and Accountability Act includes privacy protections for patients that can be misunderstood and misapplied by health officials and health care organizations. In some instances, HIPAA has been improperly used to deny reporters’ requests for interviews with patients and clinicians or to obtain medical information. Reporters should be familiar with the law in order to understand when and to whom it applies.
KEY RESOURCES
HIPAA experts: No need to request a waiver after Orlando shooting
Following a mass shooting in Orlando in 2016, there was some confusion about whether HIPAA's privacy rules limited the information hospital officials could release. Joseph Burns clears up the issue.
Understanding HIPAA: A brief overview
This tip sheet spells out the basics of the privacy rule that went into effect in 2003.
U.S. Department of Health & Human Services: Health Information Privacy
Learn more about HIPAA and other privacy issues in health care.
Journalists get guidance on navigating HIPAA rules (May 2015)
Experts shared key points and tips during a panel at Health Journalism 2015.
What you need to know about medical privacy (Updated July 2015)
Consumer Reports explains key points about HIPAA.
HIPAA's use as code of silence often misinterprets the law (July 2015)
New York Times piece on unintended, misguided citations of the privacy rule.
ADDITIONAL RESOURCES
Is HIPAA Creating More Problems Than It's Preventing? (2013)
Hospital lawyers and risk managers, seeking to protect their organizations against lawsuits, overinterpret the law.
Clark Kauffman - Body of work (2008)
Kauffman’s award-winning stories about health care and HIPAA in Iowa.
HIPAA: Good intentions and unintended consequences (March 2006)
A lawyer offered this primer on HIPAA’s privacy rule at Health Journalism 2006.
A Reporter’s Guide to Medical Privacy Law (PDF)
A guide from the Reporters Committee for Freedom of the Press on navigating the privacy rule.
HIPAA and Newsgathering: Basic Tips for Reporters and Editors (Spring 2004)
A guide from Davis Wright Tremaine LLP on what HIPAA's privacy rule should be used.
The Basics of HIPAA for Health Care Journalists
A lawyer's presentation from Health Journalism 2003.
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Medical costs
The high cost of medical care is one of the biggest challenges facing American society – a challenge made more difficult by a complex and shifting financing system. Journalists have a key role in informing the public about where and how money flows in health care, who benefits, and what practices yield the highest value.
LATEST RESOURCES
Medicare provider charge data (updated June 2015)
Hospital-specific charges for the top 100 most frequently billed discharges at the 3,000 hospitals across the U.S. that receive Medicare payments.
Tracking doctors' fees: An important angle to pursue when hospitals acquire physician groups (May 2015)
When a hospital or health system buys a physician’s group, doctors' fees usually rise sharply.
Debunking myths designed to hinder price, quality transparency efforts (May 2015)
An expert shared the misinformation that health care providers use to block efforts to release pricing information.
Finding the story behind hospital mergers, consolidations (March 2015)
Dan Goldberg looks at five large health systems and the strategies they employ to diversify their revenue base while preparing to play in a post-ACA, value-based world.
How a secretive committee recommends how much physicians should be paid (December 2014)
Understand how the Relative Value Update Committee works.
Miami journalist reports on the challenges in getting price transparency data in South Florida, undated (October 2014)
Difficulties in getting data on price transparency.
Six things to remember in reporting on health care costs (August 2014)
Three reporters offer guidance for reporting on health care costs.
ADDITIONAL RESOURCES
Building transparency in health care costs (August 2014)
Journalists and developers build a public, nonproprietary database in which users can easily contribute and look up costs.
Health care industry reacting to overtesting, overtreatment (May 2014)
Four panelists discussed the waste of unnecessary tests and procedures at a Chicago AHCJ chapter event.
Delving into cost reports reveals financial health of hospitals, amount of charity care they provide (December 2013)
Oklahoma Watch published a two-part series on hospital financial data, and reporter Clifton Adcock explains how they obtained the data.
Beyond premiums: Five things to know about health care costs in the exchanges (September 2013)
The specifics behind exchange premiums
GAO report a rich source on range of insurance premiums (July 2013)
Examining data from the U.S. Government Accountability Office.
Geotagging CMS Medicare discharge data to highlight cost differences (June 2013)
Visualizing CMS data with an interactive map.
CMS unveils dataset on top hospital discharge payments (May 2013)
Journalists, advocates and consumers can compare costs nationally, between or among states, cities, or counties.
How one reporter asks for – and often gets – meaningful medical pricing information (April 2013)
Specific tips and questions a reporter uses to get information on medical pricing.
Finding information on medical costs (November 2012)
Resources on costs, devices, drug manufacturers and medical tests.
Latest innovations in Medicare (July 2012)
Pilot projects under the Affordable Care Act that are intended to control medical costs.
Why insurers care about the medical-loss ratio (July 2010)
Understanding the significance of the medical-loss ratio.
AP takes on medical costs of overtreatment (June 2010)
A look a six-part series on overtreatment from The Associated Press.
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Data
The wealth of data now available in health care is rich with potential – if you know how to read it and use it. Here are resources on finding and analyzing useful data for your stories.
KEY RESOURCES
HospitalInspections.org
AHCJ database on of federal hospital inspection reports.
Medicare's Nursing Home Compare database
Data compiled from inspections and compares health and fire safety concerns as well as quality measures and staffing information for nursing homes across the country.
Medicare provider charge data
Hospital-specific charges for the top 100 most frequently billed discharges at the 3,000 hospitals across the U.S. that receive Medicare payments.
For AHCJ members: Access data about medical education, training
Access to national rankings on physician residency programs for AHCJ members only.
Geotagging CMS Medicare discharge data to highlight cost differences (June 2013)
Visualizing CMS data with an interactive map.
Use caution with new data on doctor payments from drug, device companies (September 2014)
Charles Ornstein offers guidance for using data on drug and device companies’ payments to doctors. Originally published by ProPublica.
ADDITIONAL RESOURCES
Video shares tips for using data to health reform (July 2014)
Highlights of six databases on health care reform law.
Reporters can use hospital readmission data to explore key issues (September 2012)
How to work with this data successfully.
Covering the potential effects of hospital consolidation (October 2014)
Using financial data to cover consolidations and mergers.
The new ecosystem of health data keeps getting bigger (March 2015)
Numbers of health care datasets are growing constantly.
How a secretive committee recommends how much physicians should be paid (December 2014)
Understand how the Relative Value Update Committee works.
Tiptoeing into Medicare data (July 2014)
Helpful Medicare datasets.
Figuring out the politics of patient harm (December 2014)
The challenges of compiling a nonpartisan report on patient harm.
How I did it: Reporting on delays in newborn testing (December 2013)
Ellen Gabler shares how she investigated delays in newborn testing.
Master your market: Data to cover insurance under the ACA (July 2015)
Data from the National Association of Insurance Commissioners Annual Exhibit on Enrollment, Premiums, and Utilization for 2014.
How one reporting team used public records to find questionable Medicare Advantage spending (July 2014)
Fortunately, the government can’t run a program as big, complex and controversial as Medicare Advantage without putting a ton of documents and other information online.
Online hospital inspection reports open door to power reporting
Hospital inspection reports one key to writing about quality of care
How to cover nursing homes with more depth and data
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AHCJ advocacy
The Association of Health Care Journalists advocates for the free flow of information for journalists and the public. Through its advocacy arm, the Right to Know Committee, it works to open doors to health and medical knowledge and serves as a resource for members having difficulty accessing information.
LATEST RESOURCES
HHS secretary promises ‘open and transparent’ relationship with media
Don’t be late to #AHCJ18: Program kicks off with D.C. pros revealing how they get their stories
Reporters struggle to learn the facts after only three get briefing on drug price proposals
AHCJ protests troubling incidents at HHS, calls on Azar to open the doors
CMS decides not to extend contract of consultant who threatened Modern Healthcare
CMS makes amends with Modern Healthcare but questions remain
CMS threatens to bar Modern Healthcare from press calls after reporter refuses to alter story
HHS officials pledge availability to reporters
AHCJ calls for improved media access to top federal health officials
AHCJ joins 60 other journalism groups to ask Trump administration for meeting on government access
Ruling takes one step closer in releasing SNAP data
Survey of health journalists finds roadblocks to information at federal agencies
The process and contacts for appealing HHS decisions on information requests
HHS agrees to recognize AHCJ membership as credential
For successful information requests, be familiar with guidelines for HHS public affairs staff
How AHCJ engages in sustained push for transparency year round
AHCJ disappointed with ACGME’s response on transparency
AHCJ pushes for more data on residency programs
Sunshine Week: Committee advocates for access to information
Fight for access to Medicare payments to physicians nearly over
AHCJ seeks release of health insurance exchange data
AHCJ urges government to release Medicare payment data
Journalists call on USDA to release food stamp information
AHCJ protests FDA surveillance of communication between reporters, scientists
AHCJ opposes taking taxpayer-funded research out of public’s reach
AHCJ urges Joint Commission to release inspection results
After AHCJ protest, HHS stipulates public meetings are open to media
AHCJ opens dialogue to improve journalists’ access to medical society meetings
AHCJ calls for accessible reporting of physician payments
AHCJ weighs in on FCC broadcast transparency proposal
Committee works to improve access to experts, officials
ADDITIONAL RESOURCES
How the FDA Manipulates the Media
Charles Seife, in Scientific American, finds that the U.S. Food and Drug Administration has been arm-twisting journalists into relinquishing their reportorial independence, our investigation reveals. Other institutions are following suit.
Health Journalism 2011: Officials, reporters offer conflicting advice on getting public documents
Finding the middle ground between persistence and patience in the fight to obtain public records.
AHCJ Publications and issues of HealthBeat
Books, slim guides, back issues of HealthBeat.
U.S. Department of Health & Human Services news media contacts
Quick contact information for HHS Press Office.
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Key resources
AHCJ’s advocacy work has resulted in the development of policies and guidelines aimed at improving openness and access to information. Here is a collection of those documents.
The process and contacts for appealing HHS decisions on information requests
For successful information requests, be familiar with guidelines for HHS public affairs staff: Information on appeals process and contacts
Health officials, journalists agree information is key in public health crisis
New guidance addresses information release in public health emergencies
HHS Guidelines on the Provision of Information to the News Media
AHCJ, HHS officials address appeal process for inadequate responses by PIOs
HHS contacts for appeals (updated July 2015)
Reporters urged to insist on response from government agencies
Talk to the Hand: Public health reporters say federal agencies are restricting access and information, limiting their ability to cover crucial health issues.
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HIPAA
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Data
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Key 
We never obtained the patient death and hospitalization reports that dentists must file in most states. We thought we had a good chance of getting these records here in Texas, which does not explicitly classify them as confidential. We spent significant time and money in suing for the records, but a judge ultimately rules against us. There are a few states that are willing to share such records — which is fertile ground for further reporting.