Tag Archives: freedom of information

Sunshine Week: Committee advocates for access to information

Irene M. Wielawski

About Irene M. Wielawski

Irene M. Wielawski (@wielawski), a founding member of AHCJ, is an independent writer and editor specializing in health care and policy. Wielawski, a member of AHCJ's board of directors, is chair of AHCJ’s Right to Know Committee and serves on the Freelance and the Finance and Development committees.

swlogo-198x300This is Sunshine Week, a yearly celebration of open government. It’s held every year in the week that includes the birthday (March 16) of President James Madison, a champion of the First Amendment.

Sunshine Week has its roots in a 2002 protest by journalists against efforts by Florida’s legislature to weaken the state’s public records law. Today, it is a national endeavor of the American Society of News Editors and The Reporters Committee for Freedom of the Press, but many other organizations take the occasion to note the importance of open government and a free press. Sunshine Week’s slogan is “Your Right to Know,” which brings me to the work of the Right to Know Committee of the Association of Health Care Journalists.

Through research, letters, op-ed columns and meetings with government officials, the committee advocates for access to the information health care reporters need to do their jobs. But the purpose, says Vice Chair Felice J. Freyer, who has served on the committee since 2007, goes beyond making reporters’ jobs easier.

“In demanding government transparency, we’re upholding a fundamental principle of democracy – the citizens’ right to easily see what their government is doing, in their name, with their tax dollars,” Freyer says.

The work has its share of frustrations, not unlike journalism itself, where the reporting effort does not always yield commensurate public response. Our straight-up wins are rare but we have made progress on several fronts: Continue reading

Barring access to information, officials poses threat to public health

Pia Christensen

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates social media efforts of AHCJ and assists with the editing and production of association guides, programs and newsletters.

Alice Dreger, a professor of clinical medical humanities and bioethics at Northwestern University’s Feinberg School of Medicine, writes for Pacific Standard Magazine about the public health threat caused by public officials who censor news, fail to respond to press queries or prevent health agency employees from speaking to journalists without a representative from the press office.

Dreger points to the current Middle East respiratory syndrome (MERS) crisis, referring to a piece in Wired by AHCJ board member Maryn McKenna. But she also reminds us that it was journalists who sounded the alarms about the dangers of thalidomide and the Tuskegee Syphilis Study, not to mention the journalists who pushed for more public awareness of AIDS when the Reagan administration was limiting the response to the emerging disease. Continue reading

Judge’s decision puts Medicare data in public realm

Pia Christensen

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates social media efforts of AHCJ and assists with the editing and production of association guides, programs and newsletters.

A decision announced Friday would allow the public and journalists access to Medicare claims data about individual doctors.

An injunction barring release of the data had been in place for 33 years, “when a federal court in Florida sided with the American Medical Association’s contention that doctors’ right to privacy trumped the public’s interest in knowing how tax dollars were spent,” according to John Carreyrou of The Wall Street Journal.

“Dow Jones & Co., The Wall Street Journal’s parent company, challenged the injunction in 2011 after the Journal published a series of articles showing how the information could be used to expose fraud and abuse in the $549 billion health-care program for the elderly and disabled.”

Wall Street Journal reporters, who negotiated for eight years worth of data if they did not publish identities, wrote a series of stories about Medicare data, showing that the federal government isn’t taking advantage of the data it has to detect fraud. The Wall Street Journal’s articles have offered a window into the forces driving up health spending and shown that analyzing the data can reveal abuse and fraud in the Medicare system.

“The public has a right to know how much physicians are being paid by Medicare and what services they are providing patients,” said AHCJ President Charles Ornstein. “With analysis and context from journalists, the data could help patients make informed decisions and provide necessary oversight of billions of dollars in federal spending.”

Carreyrou reports the American Medical Association “is considering its options on how best to continue to defend the personal privacy interests of all physicians.”

The Crushing Cost of Care,” by the WSJ’s Janet Adamy and Tom McGinty, won first place in the Health Policy (large) category of the 2012 Awards for Excellence in Health Care Journalism.

Read more about the Medicare data and the fight to open it to the public:

Roundtable gives journalists chance to share tips on open access #ahcj13

Blythe Bernhard

About Blythe Bernhard

Blythe Bernhard reports on health and medicine for the St. Louis Post-Dispatch and serves on AHCJ's Right to Know and Contest committees. She attended Health Journalism 2014 as an AHCJ-Missouri Health Journalism fellow, a program supported by the Missouri Foundation for Health.

Do your sources ask for email interviews or quote approval? Are press relations officers listening in on your interviews? The Right to Know Committee will host a roundtable discussion at Health Journalism 2013 on Thursday, March 14, to share stories and offer advice about these issues and other barriers to open and straightforward newsgathering.

A look at some of the issues, sessions and ideas to keep in mind for those planning to attend Health Journalism 2013, the annual conference of the Association of Health Care Journalists.

Peggy Peck, editor of MedPage Today, and Irene Wielawski, an independent journalist and founder of AHCJ, will join me in moderating the discussion. As members of the Right to Know Committee, we are advocates for public information and open access to government officials and medical experts.

Reporters at MedPage Today do not allow their sources to approve quotes. The website alerts readers when interviews are conducted in the presence of a publicist. Peck will talk about her decisions on these issues and advise other editors looking to implement similar policies in their newsrooms. Continue reading

AHCJ protests FDA surveillance of communication between reporters, scientists

Pia Christensen

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates social media efforts of AHCJ and assists with the editing and production of association guides, programs and newsletters.

Following a New York Times report over the weekend that revealed the federal government secretly tracked communication sent by FDA scientists to “members of Congress, lawyers, labor officials, journalists and even President Obama,” the Association of Health Care Journalists has expressed alarm at the “Orwellian practices” in a letter sent to HHS Secretary Kathleen Sebelius.

From the letter:

” … the pushback on journalists seeking information from HHS and its agencies, coupled with covert monitoring of scientists’ communications with journalists and elected representatives, reflects a culture of cynicism within your department toward the principles of open government, free speech, and the public’s right to know. The actions detailed in the Times story imperil all reporters’ relationships with HHS and its agencies.”

The letter goes on to request that the agency notify all reporters whose communications were intercepted and conduct an audit of all HHS divisions to find out how widespread the monitoring is.

The Times reports that the surveillance grew out of a “narrow investigation into the possible leaking of confidential agency information by five scientists” and “identified 21 agency employees, Congressional officials, outside medical researchers and journalists thought to be working together to put out negative and ‘defamatory’ information about the agency.”

The report was especially shocking to AHCJ because the association has been working for years to make it easier for reporters to interview federal employees and get information from HHS agencies. The HHS media office has been receptive to the organization’s concerns and pledged to improve responsiveness. Indeed, many members have reported improvements in access. But the Times story points a deeper culture running contrary to these efforts.

The FDA used software that tracked keystrokes and captured screenshots on the scientists’ computers. The documents were eventually posted on a public website, apparently by mistake, the Times says.

HHS responds to questions about enforcement of NPDB restrictions

Pia Christensen

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates social media efforts of AHCJ and assists with the editing and production of association guides, programs and newsletters.

Journalists who name troubled physicians in their stories after downloading a public version of the National Practitioner Data Bank do not have to answer government questions about their sources and will not be subject to criminal, civil or administrative penalties if they violate new restrictions on use of the database.npdb-041312

That’s according to a spokesman for the U.S. Department of Health and Human Services, who wrote to AHCJ last week. AHCJ had asked the U.S. Health Resources and Services Administration, which operates the database, how it intended to enforce the new restrictions on its use, which were imposed late last year.

The federal response is the latest in a long-running dispute between the Obama administration and journalism organizations about the Public Use File of the government’s doctor disciplinary database.

The National Practitioner Data Bank compiles malpractice payouts, hospital discipline and regulatory sanctions against medical practitioners, for private use by hospitals and other organizations that credential them.

While the data bank is secret, for years HRSA has posted a Public Use File, often consulted by reporters and researchers. This public version of the data bank lists the disciplinary actions, but identifies the doctors and other practitioners only by number. As required by law, it contains no identifying information, such as names, addresses, Social Security numbers or dates of birth. But reporters have used the Public Use File to enhance information they had gathered elsewhere on known doctors.

HRSA removed the Public Use File from its website last year for two months after a doctor and his lawyer complained that a Kansas City Star reporter improperly used it to identify him. Following protests from journalists and consumer groups, in November, HRSA restored the public file but began requiring anyone wishing to download it to agree he or she will not use it to identify individual physicians.

The Association of Health Care Journalists, Investigative Reporters and Editors, National Association of Science Writers, National Freedom of Information Coalition, Reporters Committee on Freedom of the Press, and Society of Professional Journalists protested this decision.

In a letter sent to HRSA administrator Mary Wakefield in December, the groups asked what process HRSA would follow to determine whether a reporter had violated the agreement and whether HRSA would ask to see notes and talk to sources, among other questions.

In a response, HHS Deputy Assistant Secretary for Public Affairs Chris Stenrud wrote:

“As you know, HRSA is required by law to maintain the information in the Public Use File of the National Practitioner Data Bank (NPDB) in a form that does not permit the identification of individual practitioners or health care entities. The data use agreement (DUA) was added to help ensure that the data would be in such a form and HRSA’s legal obligation under the statute would be met.

“HRSA will investigate alleged breaches of the DUA on a case-by-case basis. HRSA may request additional information from the reporter or third parties, but the Department cannot compel reporters or third parties to speak with us. We have been advised by the HHS Office of the General Counsel that a user who violates the Public Use File’s DUA is not subject to criminal, civil or administrative penalties. If HRSA determines that data from the PUF have been misused, however, HRSA would need to re-examine the data and consider removal of any specific data points that are making the information identifiable.”

AHCJ President Charles Ornstein said he believes the government continues to misinterpret the law governing the database, noting that previous Democratic and Republican administrations had not imposed this requirement on the same information. That said, he advised reporters using the Public Use File to exercise their rights not to answer questions about their reporting methods that federal officials may ask.

“This fight is not over,” Ornstein said. “While we are adamant that the government return free and open access to this database, this letter provides answers to some of the questions we asked,” Ornstein said. “In the event the government comes calling, reporters do not have to answer questions about their sources, and they and their organizations cannot be penalized in any way for their use of the Public Use File.”

Ornstein suggested reporters speak to their editors and attorneys before downloading the database. Another option, he said, is for concerned reporters to download a slightly older version of the file -which has no restrictions on its use – from the website of the Investigative Reporters and Editors. The file has not been updated since August 2011.

“If anyone encounters any difficulty or problems from government officials regarding their use of the doctor discipline database, please alert us immediately,” Ornstein said.

For more background, please see AHCJ’s Right to Know page or this timeline.


Reporters: Federal public affairs staffers block access to information

Pia Christensen

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates social media efforts of AHCJ and assists with the editing and production of association guides, programs and newsletters.

Reporters who cover federal government agencies say they face impediments to getting information to the public because of interference from public affairs officers, according to a survey released by the Society of Professional Journalists. [Press release]sunshine-week1

About 70 percent of the 146 journalists who responded to the survey said they had a positive relationship with the public information officers with whom they work, and most reported that officers quickly respond to their queries most of the time.

However, overwhelmingly, comments from the surveyed journalists indicated increasing frustration at what they perceive as efforts by agencies to control the message to the public. “PAOs tend to make up information,” stated one respondent. “You can never trust the information they provide. They make our jobs almost impossible and they treat journalists with barely any professionalism.”

Carolyn S. Carlson, lead author of “Mediated Access: Journalists’ Perceptions of Federal Public Information Officer Media Control,” notes that reporters are “running into interference rather than assistance from the very people hired by the government to help them. Public affairs officers need to facilitate media coverage, not interfere or block it.”

The survey reveals that reporters have to get approval from public affairs officials before interviewing sources, something AHCJ and other journalism groups have protested in the past, and some agencies are not allowing interviews of employees. About 84 percent reported their interviews have been monitored by PIOs, another issue AHCJ has written about.

Journalists agreed that government control over who is interviewed is a form of censorship and that the public is not getting vital information as a result of these controls.

The survey was conducted by Carlson, an assistant professor of communication at Kennesaw State University in Kennesaw, Ga., and David Cuillier, director of the School of Journalism at the University of Arizona in Tucson, Ariz., on behalf of the SPJ Freedom of Information Committee, of which both are members. They were assisted by Kennesaw journalism student Lindsay Tulkoff.

Tell us about your experiences with HHS

Tomorrow AHCJ will hold our quarterly conference call with the HHS media office. This usually includes a summary of our members’ experiences with the various HHS media offices (CDC, FDA, NIH, NIDA, CMS, etc), as well as discussion of specific issues.

As always, we depend on you to inform these discussions. Have you interacted with HHS or any of its divisions in recent months? Felice Freyer, chair of AHCJ’s Right to Know Committee, would like to hear from AHCJ members. Please send her a quick note describing what happened, whether it was positive or negative. Are there any concerns you’d like us to raise with them? Please send your comments to felice.freyer@cox.net or share them in the comments below.

Florida hospitals sidestep state constitution, keep records under wraps

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism, and he has blogged for Covering Health ever since.

Writing for BrowardBulldog.org, an independent investigative news site serving South Florida, Amber Statler-Matthews reports that hospitals are going to what one man called “extraordinary lengths” to prevent patients from accessing records that, according to the Florida constitution’s “Patient’s Right to Know Act,” should be made available.

Seven years ago, Florida voters overwhelmingly approved a Constitutional amendment that gave patients who had been hospitalized the right to see reports dealing with botched medical procedures and poor care. While the amendment could be used to give patients vital information before a medical mistake is made, its practical and more much publicized purpose was to give aggrieved patients more power in court by opening up malpractice complaints and confidential internal reviews of doctors and hospitals.

In the years since the amendment, the state’s courts have been pressed on both sides, with hospitals dedicating considerable resources to throwing up “roadblocks and legal challenges to block access to patient records,” Statler-Matthews writes. “In response, patients across Florida are using the law to ask judges to pry open reports about medical errors.”

For more on how the battle has evolved and details on how Florida hospitals are circumventing the constitution, see Statler-Matthews’ full piece.

AHCJ asks Supreme Court to permit broadcast of health reform arguments

Jeff Porter

About Jeff Porter

Jeff Porter is the special projects director for AHCJ and plays a lead role in planning conferences, workshops and other training events. He also leads the organization's data collection and data instruction efforts.

AHCJ has asked Chief Justice John G. Roberts of the U.S. Supreme Court to permit live audio and video coverage of the oral arguments next March in the case challenging congressional authority to mandate health insurance coverage and other provisions of the Affordable Care Act.

The Court has long permitted print journalists to cover its proceedings and, more recently, began offering time-delayed audio recordings of oral arguments. But AHCJ is pushing for real time audio and video coverage in this case, due to the historic significance of this case and potential impact on millions of Americans.

In the letter to Chief Justice Roberts, AHCJ contends that these provisions are inadequate for such a historic case with potentially sweeping impact on the health care system and millions of Americans.

The Radio Television Digital News Association has filed a similar request with the high court, as has C-SPAN and U.S. Sen. Charles Grassley, R-Iowa. The New York Times weighed in with an editorial last week.

See the AHCJ letter.

NYT reporters tease hip replacement numbers from difficult data

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism, and he has blogged for Covering Health ever since.

Writing for The New York Times, Barry Meier and Janet Roberts analyzed a particularly tricky batch of federal reports detailing a variety of complaints with popular metal-on-metal hip replacements. They found that, since January, the FDA has received more complaints (5,000-plus) about the devices than it did, total, from 2007 to 2010.

kidsPhoto by Michael Simmons via Flickr

While processing the data, the paper’s staff did their best to parse duplicate reports, international filings and other inconsistencies, but the reporters make it clear that the numbers are still best viewed in general terms. Even so, they demonstrate that the surge in complaints and lawsuits involving metal-on-metal hips — and the resulting mass defection of doctors who once implanted them — signals a broad shift in hip replacement surgery, one of the most common such procedures in the country. It also signals another blow for device manufacturers and patients, and a related windfall for the legal profession.

The vast majority of filings appear to reflect patients who have had an all-metal hip removed, or will soon undergo such a procedure because a device failed after only a few years; typically, replacement hips last 15 years or more.

The mounting complaints confirm what many experts have feared — that all-metal replacement hips are on a trajectory to become the biggest and most costly medical implant problem since Medtronic recalled a widely used heart device component in 2007. About 7,700 complaints have been filed in connection with that recall.

As problems and questions grow, most surgeons are abandoning the all-metal hips, saying they are unwilling to expose new patients to potential dangers when safer alternatives — mainly replacements that combine metal and plastic components — are available. Some researchers also fear that many all-metal hips suffer from a generic flaw. Current use of all metal devices has plummeted to about 5 percent of the market, though a few of the models are performing relatively well in select patients.