Category Archives: Right to know

After 5-year FOIA fight, documents show ties between researchers, officials in Lyme wars

Leave a reply
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.

Documents obtained after a long FOIA battle reveal “behind-the-scenes maneuvers and long-standing connections between the scientists’ group and government officials” in the debate over whether Lyme disease can be chronic.

The debate, and the fight for the documents, are detailed by Mary Beth Pfeiffer in the Poughkeepsie (N.Y.) Journal and by documentary film maker Kris Newby on IRE’s Transparency Watch blog.

In 2007, in doing research for a film, Newby requested emails and resumes pertaining to three employees at the Center for Disease Control and Prevention. She writes that “For five years the agency strung me along with frivolous denials, mysterious delays, shifting explanations and false promises. In essence, the delays became an illegal, off-the-books FOIA denial.” Her account of how the CDC handled – or didn’t handle – her request is alarming.

Newby, whose film had been completed, provided the 3,000 pages of documents to Pfeiffer.

The documents show close connections between the government officials who set disease policy and researchers who have received government funds and written treatment guidelines. “As a result, physicians and scientists with opposing views on Lyme disease believe they have been marginalized in the debate.” This graphic provides a good overview of the connections and issues.

Pa. bill would require disclosure of food stamp purchases

Leave a reply
Felice Freyer

About Felice Freyer

Felice J. Freyer is a member of AHCJ's board of directors, serving as co-chair of the organization's Right to Know Committee.

Food stamps

Photo by cosmocatalano via Flickr

A Pennsylvania congressman last week filed a bill that would require retailers to report which items are bought with food stamps.

The proposed “SNAP Transparency Act,” sponsored by Republican Rep. Tom Marino, would require the secretary of agriculture to establish a uniform reporting system under which retailers would track “the complete range, identities, sizes, quantities, and costs of particular food items” purchased with benefits from the Supplemental Nutrition Assistance Program, or food stamps.

If passed, the legislation could give journalists and advocates access to long-sought information about the food purchases of SNAP recipients, at a time of growing concern about their access to healthy foods and about obesity and related health problems among the poor. Currently the U.S. Department of Agriculture does not have the authority to collect such information.

The act would address one of two issues raised in a recent letter to Agriculture Sec. Tom Vilsack from AHCJ and six other organizations representing journalists and open-government advocates. Continue reading →

Drugs remain on market despite fraudulent research; FDA withholds information

Leave a reply
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.

Despite concluding that a drug research lab’s violations “were so ‘egregious,’ and pervasive that studies conducted there between April 2005 and August 2009 might be worthless,” the FDA didn’t pull the drugs tested there from the market, according to a ProPublica piece by Rob Garver and Charles Seife.

pills

Photo by Grumpy-Puddin via Flickr

The FDA is refusing to release information about those drugs, saying that “We believe that this did not rise to the level where the public should be notified.”

A statement from the agency said, “The issue is not a lack of transparency but rather the difficulty of explaining why the problems we identified at Cetero, which on their face would appear to be highly significant in terms of patient risk, fortunately were not.” Continue reading →

Journalists call on USDA to release food stamp information

3 Replies
Felice J. Freyer & Irene Wielawski

About Felice J. Freyer & Irene Wielawski

Felice J. Freyer and Irene Wielawski are co-chairs of AHCJ's Right to Know Committee and members of AHCJ's board of directors.

The Association of Health Care Journalists, along with six other journalism and open-government groups, has called on the U.S. Department of Agriculture to release to the public vital information about the multibillion-dollar food stamps program.

Currently, the USDA refuses to reveal how much money individual retailers make from the Supplemental Nutrition Assistance Program, better known as food stamps. Additionally, the USDA does not disclose which products are purchased with SNAP dollars or how much is spent on each product, in aggregate.

This information could show which businesses benefit from the program and also inform public policy debates about obesity and its causes, the organization argues.

The USDA’s position runs contrary to President Obama’s promise of government transparency, and stands in sharp contrast with practices at other federal agencies. For example, the Temporary Assistance for Needy Families discloses where recipients used their EBT cards to withdraw cash assistance. A wealth of information is available about Medicare and Medicaid. Continue reading →

Online hospital inspection reports open door to power reporting #ahcj13

Leave a reply
Alan Scher Zagier

About Alan Scher Zagier

Alan Scher Zagier is a reporter at The Associated Press. He is attending Health Journalism 2013 on an AHCJ-Missouri Health Journalism Fellowship, which is supported by the Missouri Foundation for Health.

Any reporter who has sought public records from the feds knows the practical nightmare that is the Freedom of Information Act (FOIA).  Delays of months, years and even decades before receiving requested documents or data are not uncommon.

Now, after years of negotiations with the Centers for Medicare and Medicaid Services (CMS), the Association of Health Care Journalists is offering both reporters and the general public instant online access to thousands of federal inspection reports for hospitals nationwide with a searchable news application at hospitalinspections.org.

AHCJ board president Charles Ornstein of ProPublica helped unveil the site at a Saturday morning news briefing in Boston.

“Until now, you weren’t able to see what [hospitals] were doing, because you had to request all these in PDF format, and compare them [individually],” he said. “Now, you can actually use the power of data to find examples, and write that story. Continue reading →

Using DocumentCloud to shine a light on sources #ahcj13

Leave a reply
Philip Marcelo

About Philip Marcelo

Philip Marcelo is a statehouse reporter at The Providence (R.I.) Journal. He is attending Health Journalism 2013 on an AHCJ-Rhode Island Health Journalism Fellowship, which is supported by The Rhode Island Foundation.

Photo by Pia Christensen

“Turn documents into data,” is the tagline for DocumentCloud, a free Web tool for journalists who want to search, analyze, annotate, publish and publicly share certain primary source documents.

Mark Horvit, executive director of Investigative Reporters & Editors, which operates DocumentCloud, gave an hour-long workshop on what the tool does and why it’s useful for journalists on Thursday, the first day of Health Journalism 2013.

Basically, the site allows journalists to take PDFs – the largely unalterable file format of most government documents – and make them as easy to work with as a normal Microsoft Word document.

Horvit said the goal is to put public documents in the hands of everyday people and in a useful way.

“We talk a lot about transparency as journalists,” he said. “DocumentCloud provides transparency in two different ways. First it allows you to help government and business be more transparent by taking their documents, posting them and making them available to your audience. But it also provides transparency for the work that you do. In other words, readers no longer have to just take your word for it. You can post all the source documents for your story, so that your audience has a chance to see what you got.”

Among the features of DocumentCloud that Horvit highlighted:  Continue reading →

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

Leave a reply
Blythe Bernhard

About Blythe Bernhard

Blythe Bernhard has reported on health and medicine for the St. Louis Post-Dispatch since 2007. She serves on AHCJ's Right to Know and Contest committees.

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 member speaks to attorneys about information in public health crises

Leave a reply
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.

This is a guest post from AHCJ member Rose Hoban, R.N., M.P.H.

What kind of information are public health officials obligated to provide to members of the public during an epidemic?

That was the theme of a panel this month at the third Public Health Law Conference in Atlanta with the theme of “Informing the Public While Protecting Privacy.”

I was asked to be part of the panel as a result of my participation in a collaborative effort between members of AHCJ and the leaders of the Association of State and Territorial Health Officers and the National Association of County and City Health Officials, several state health directors, and representatives from federal agencies in 2010.

During that effort, we sat down to talk about creation of guidance for communicating during crises such as the H1N1 outbreak that took place in 2009-10.

Rosemary Hoban
Rose Hoban

I presented that guidance and the context of its creation to a room of about 40 attorneys who practice in the public health space. I acknowledged the difficulty public health officials have walking the line between giving journalists enough information to report effectively while allowing them to feel confident they’re protecting privacy. I also reassured them that by following the guidance, they’d be able to do both.

Also on the panel was Khaled El Emam, a professor of informatics from the University of Ottawa, who runs the Electronic Health Information Lab.

El Emam talked about his research in de-identifying personal identifying information in large databases, and the surprising ease with which one can glean personal information about an individual even within a large database.

He presented a tool developed by the lab that calculates the probability of an individual being identified in a given population. Continue reading →

Forum on Medicaid expansion, previously closed to press, now open

Leave a reply
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.

For the past few days, AHCJ has been working with the Obama administration to resolve questions about whether reporters can dial in to an open door forum tomorrow about the Medicaid expansion.

Originally, the administration’s notice said that the event was open to stakeholders and other interested parties, but was closed to the press. That runs counter to the administration’s policy about such events. HHS and CMS have now confirmed to us that reporters can indeed call in to listen to the forum (details are below).

Note that this is not a press conference and press questions will not be taken, but it is a good opportunity to hear from officials and to hear from stakeholders who ask questions, provide comments etc. If you want to follow up, you should contact the CMS or HHS press offices afterward with questions. Here is the information about the forum:

Low-Income Health Access Open Door Forum

WHAT:  Affordable Care Act Implementation Update for Clinicians, Hospitals and other Healthcare Providers
TOPIC:  Medicaid Expansion
DATE:  Sept. 13 at 2 p.m. ET
DIAL IN:  1-888-455-2963  Passcode:  2954962

AHCJ and our Right to Know Committee take reporters’ access to open meetings seriously. If you encounter any difficulty, please contact AHCJ Board President Charles Ornstein or our Right to Know co-chairs Felice Freyer and Irene Wielawski know immediately.

AHCJ protests FDA surveillance of communication between reporters, scientists

Leave a reply
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.