Right to Know
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The Association of Health Care Journalists advocates for the free flow of information to the public and collects news and information about public records, freedom of information and information about the HIPAA privacy rule.
News from the Right to Know Committee
In November, Department of Health and Human Services held a series of “listening sessions” in 10 cities to gather input on an important aspect of the Affordable Care Act. These meetings were publicized among thousands of invited “stakeholders,” and anyone who heard by word of mouth could also attend.
But apparently no media advisories went out and, worse, reporters who happened to learn about the meetings were barred from attending. The meetings were not transcribed or recorded.
The Association of Health Care Journalists worked with the HHS media office to find out what had happened and to express its concerns. As a result HHS has agreed to make it a policy that public meetings are open to the media.
The Association of Health Care Journalists has launched an effort to improve reporters’ access to the data and information released at medical society meetings.
These meetings are often the world’s first look at research findings and advances in medical science. But the policies of some medical societies can make it hard for reporters to do their jobs well.
AHCJ is supporting a new effort to require broadcasters to report their funding sources online, because that would make it easier for people to recognize infomercials that masquerade as news.
The practice of broadcasting reports that, unbeknownst to viewers or listeners, are paid for by hospitals or other health-care organizations has long been a concern.
Now, the Federal Communications Commission is proposing rules requiring that sponsorships be posted online in a searchable database. Currently, such information is available only to people who go to the station and ask to review paper files.
Congress should not roll back public access to taxpayer-funded research reports, AHCJ wrote in a letter to members of Congress.
AHCJ is opposing the Research Works Act (H.R. 3699), which would remove the public’s access to medical journal articles about publicly funded research. They are currently available for free to the public no more than 12 months after their publication in a medical journal.
The Association of Health Care Journalists and five other journalism organizations asked federal health officials this week to specify how they plan to enforce new rules governing access to the public version of the National Practitioner Data Bank.
In a letter to Mary Wakefield, administrator of the Health Resources and Services Administration, the groups continued to express disappointment in the agency’s restrictions on the data bank’s Public Use File. In the past, reporters have used the file to expose faulty oversight of doctors by state medical boards.
Responding to a report that federal health officials met in private with Wall Street investors, AHCJ leadership sent a letter to the acting administrator of the Centers for Medicare and Medicaid Services objecting to the selective release of information to stakeholder groups.
AHCJ’s letter, signed by president Charles Ornstein, states, “We feel strongly that journalists should receive information from CMS no later than other groups. If guidance or previews are provided to special interest groups, it also should be provided to journalists, who inform the public.”
How often does your state medical board search doctors in the National Practitioner Data Bank? Surprisingly not often, according to data provided to the Association of Health Care Journalists by the U.S. Health Resources and Services Administration, which runs the data bank.
AHCJ and other media groups have been pushing the government to restore unfettered access to the Public Use File of the data bank, citing important stories that journalists have written about lax oversight of doctors by state medical boards.
AHCJ requested data from HRSA so reporters could see how often their states check the backgrounds of medical doctors and osteopaths, as well as interns and residents. The numbers are available in two different charts.
The Association of Health Care Journalists and six other journalism organizations on Thursday formally protested the Obama administration’s new restrictions on access to the republished Public Use File of the National Practitioner Data Bank.
In a letter to U.S. Health and Human Services Secretary Kathleen Sebelius, the groups said that the new restrictions “are ill-advised, unenforceable and probably unconstitutional. Restricting how reporters use public data is an attempt at prior restraint.”
AHCJ welcomes the re-posting of the public version of the National Practitioner Data Bank, but has concerns about new conditions reporters must agree to in using the data.
“I appreciate the Obama administration’s willingness to work with reporters on this issue but I am concerned by new restrictions that reporters must agree to in order to access the data,” AHCJ Board President Charles Ornstein said. ”How can the government say data is public but then say it’s only public with strings attached?”
The action taken by the U.S. Health Resources and Services Administration to remove the public version of the National Practitioner Data Bank came only after the urging of a Kansas neurosurgeon with a long history of malpractice payouts, according to records released Nov. 3 by U.S. Sen. Charles Grassley.
The doctor, Robert Tenny, sent six letters to HRSA before and after the Kansas City Star wrote a story that said he had been sued at least 16 times for malpractice and had paid out roughly $3.7 million since the early 1990s.
Grassley blasted HRSA for making a hasty decision to remove the data bank’s Public Use File from its website without doing independent research and he called for its immediate restoration.
Twenty-three academics and researchers have added their voice to the growing condemnation of the Obama administration’s decision to remove the Public Use File of the National Practitioner Data Bank.
In a Sept. 22 letter to Health and Human Services Secretary Kathleen Sebelius and Health Resources and Services Administration Administrator Mary Wakefield, the academics wrote that they “condemn, in the strongest possible terms, HRSA’s recent decision to make the Public Use File (PUF) of the National Practitioner Data Bank (NPDB) unavailable.”
U.S. Sen. Charles Grassley (R-Iowa) sent a letter to the Health Resources and Services Administration, criticizing its decision to remove a public version of the National Practitioner Data Bank, which has helped reporters and researchers to expose serious gaps in the oversight of physicians.
“Shutting down public access to the data bank undermines the critical mission of identifying inefficiencies within our health care system – particularly at the expense of Medicare and Medicaid beneficiaries,” Grassley wrote to HRSA Administrator Mary Wakefield. “More transparency serves the public interest.”
A former federal official criticized a decision by the U.S. Health Resources and Services Administration for removing the Public Use File of the National Practitioner Data Bank from the agency's website - a major development as journalism groups fight to restore access to the important tool.
Robert Oshel, who created the Public Use File in the mid-1990s and managed it until his retirement in 2008, said in a statement released to the Association of Health Care Journalists on Sunday that HRSA is "erroneously interpreting the law" governing the data bank.
HHS Sec. Kathleen Sebelius
The Association of Health Care Journalists and five other journalism groups appealed to Health and Human Services Secretary Kathleen Sebelius to intervene in the dispute over the Public Use File of the National Practitioner Data Bank and restore access to this important data tool.
AHCJ was joined in its letter to Sebelius by Investigative Reporters and Editors, the Society of Professional Journalists, the National Association of Science Writers, the Reporters Committee for Freedom of the Press and the National Freedom of Information Coalition. The groups have more than 15,000 members.
The U.S. Department of Health and Human Services has adopted a set of guidelines on how it will provide information to the media. The guidelines reaffirm that employees’ contacts with the media must be cleared by a public affairs office, but call on media officials to respond promptly and accurately.
AHCJ had no part in writing the guidelines but had pushed for a media policy that would promote consistency among all HHS agencies and allow reporters to know the ground rules.
Although the guidelines are in force, Richard Sorian, HHS assistant secretary for public affairs, called them a “living document” and said he welcomed feedback.
AHCJ members are encouraged to read the six-page document and share their thoughts with Felice Freyer, Right to Know Committee chair at firstname.lastname@example.org.
The U.S. Health Resources and Services Administration resisted demands by three major journalism organizations for the immediate restoration of a Public Use File of the National Practitioner Data Bank, a tool that reporters have used to expose lapses in oversight of troubled physicians.
HRSA removed the Public Use File from the data bank website earlier this month because officials believe it was used to identify physicians inappropriately.
In letters to the Association of Health Care Journalists, Investigative Reporters and Editors and the Society of Professional Journalists, HRSA Administrator Mary Wakefield said her agency regretted having to remove the Public Use File from its website and hopes to bring it back in some form "as quickly as is possible." She did not provide a date.
Three additional journalism organizations have joined the campaign calling for the Obama administration to restore access to a public version of the National Practitioner Data Bank. And letters are going out to key members of Congress asking for their assistance.
The National Association of Science Writers, Reporters Committee for Freedom of the Press, and National Freedom of Information Coalition have signed the letter, along with the Association of Health Care Journalists, Investigative Reporters & Editors, and the Society of Professional Journalists. The groups have more than 15,000 members.
The Association of Health Care Journalists, joined by the Society of Professional Journalists and Investigative Reporters and Editors, sent a letter to the Obama administration today protesting its decision to pull offline a public database of physician discipline and malpractice payments.
AHCJ, SPJ and IRE called for the government to immediately restore access to the Public Use File of the National Practitioner Data Bank. The government has made this file available online for years, and reporters have used it to call attention to lax oversight of physicians across the country.
New guidance addresses information release in public health emergencies
Public health officials and journalists now have guidance on what information should be made public when someone dies or falls ill during a public health emergency, thanks to a unique collaborative effort being made public today.
A new document – developed by leaders in public health and health-care journalism – provides a framework for releasing such information as the age and location of private individuals who have been affected by an epidemic or other public-health event.
AHCJ now has an up-to-date list of the senior media officials at each division of the U.S. Department of Health and Human Services.
These are the people reporters should contact when they are not getting meaningful and timely responses from lower-level media officials. If your deadline is approaching and you still don't have what you need, call a contact on this list.
The HHS public affairs office provided the names, email addresses and direct phone lines in response to AHCJ's continuing efforts to improve reporters' access to information from the federal government. [Read more ...]
The Food and Drug Administration has adopted a policy on embargoes that permits reporters to share embargoed information with outside sources, provided the sources agree to uphold the embargo.
The policy explicitly supports embargoes as a way for reporters to add depth and detail to their stories, and conforms to common practice among medical journals and other sources of complex information.
The policy was shared with AHCJ this week after complaints from the organization earlier this year. In January, the FDA barred reporters from interviewing experts about new regulations on medical devices until the embargo lifted. AHCJ wrote to the FDA that such an approach created obstacles to serious journalism.
The presidents of the Association of Health Care Journalists and the Society of Professional Journalists published an op-ed in The Washington Post this morning, criticizing the lack of openness within the Obama administration and calling on officials to improve the flow of information to journalists and the public.
AHCJ President Charles Ornstein and board member Felice Freyer (chair of the board's Right to Know Committee) met with representatives of the Health and Human Services Department, the Food and Drug Administration and the Centers for Medicare & Medicaid Services, as well as 12 newly appointed state health directors organized by the Association of State and Territorial Health Officials.
The federal officials professed a commitment to openness, within limits, and promise to look into specific requests to further that goal. The state health officials, who heard a panel presentation about working effectively with reporters, were receptive and eager to talk with AHCJ about building relationships at the state level.
AHCJ and its Right to Know Committee have been advocating for better and faster access to information and experts in the federal government. One agency – the FDA – has repeatedly been a focus of our efforts. Journalists have been concerned over the agency's embargo policy, constraints on newsgathering and refusals to answer queries from reporters.
Here, John Fauber of the Milwaukee Journal Sentinel describes another disturbing incident: his months of fruitless efforts to obtain public records from the FDA.
The Association of Health Care Journalists has sent a letter to FDA officials asking them to re-examine a policy that prohibits reporters from sharing embargoed materials with sources before the embargo lifts for the purpose of obtaining outside comment and context. As AHCJ notes, this highly unusual policy severely limits the ability of reporters to give readers the full story of a federal agency.
The Joint Commission, the largest nonprofit organization to accredit hospitals in the United States, has improved the quality of information available to consumers and journalists on its website. In response to a request by AHCJ's Right to Know Committee, the agency has made it easy to tell whether a facility has recently lost accreditation or is in danger of losing it.
The Association of Health Care Journalists has signed on to a letter criticizing a proposal by the Texas A&M University System that would result in punishment for journalism instructors who assign students to file open-records requests with institutions in the A&M University System.
When the H1N1 pandemic first hit in the fall of 2009, every sickness and every death was of great interest to the public. Anxiety ran high; people wanted to know how this new illness was affecting their communities. In some places, public health officials released considerable information about the victims. In others, however, they revealed little or nothing.
That may change soon, thanks to a cooperative effort between AHCJ's Right to Know Committee and the Association of State and Territorial Health Officials, aimed at establishing flexible guidelines on how much information to reveal about victims in a public health crisis.
If a public relations representative listens in on an interview, should the reporter let readers know?
That question has recently stirred debate among AHCJ members and others, following discussion sparked by AHCJ's Right-to-Know Committee, a 12-member group working to improve access to information for reporters and the public. Members of the committee recently met with federal officials about improving reporters' access to experts. In addition, the committee is working with state and local public health officials to develop guidelines on reporting deaths of interest to the public, continues its efforts to persuade the Joint Commission to make its Web site more transparent and accessible, and to challenge medical groups that impose excessive restrictions on recording and photography at their meetings.
The Association of Health Care Journalists has asked medical organizations to end policies that bar journalists from recording or photographing the meetings where new scientific research is presented. Such policies make it difficult for journalists to provide complete and accurate information to the public. Most medical societies do not bar recording and photography.
The Association of Health Care Journalists has called upon the Joint Commission, the nonprofit agency that accredits hospitals, to do a better and more complete job of telling the public what it knows about the quality of hospital care.
An informal poll of AHCJ members from across the country, as well as a review of press releases and news reports, reveals that there is a wide variation in what information local and state health officials are disclosing about H1N1 deaths. AHCJ is preparing a guide for journalists who have difficulty getting basic information about deaths that are of public interest. The organization also hopes to work with public health officials on national level to encourage greater openness.
Eleven major journalism organizations, representing thousands of journalists, are demanding the U.S. Food and Drug Administration end requirements that journalists and FDA employees notify or obtain permission from an agency official in order to conduct an interview.
The Association of Health Care Journalists, the Society of Professional Journalists, the National Newspaper Association, the Radio Television Digital News Association and several other journalism groups were joined by more than two dozen individual journalists in signing the letter sent to the agency's Transparency Task Force this week.
The Association of Health Care Journalists sent letters this week to several federal agencies and a medical journal objecting to the uneven handling of embargoed news.
The AHCJ letters were addressed to officials at the National Institute of Mental Health, the Department of Health and Human Services, the Centers for Disease Control and Prevention and the American Academy of Pediatrics to protest the recent handling of embargoes on two autism studies.
The Association of Health Care Journalists objects to any effort by the Journal of the American Medical Association to silence whistle-blowers who call attention to potential conflicts of interest involving study authors. It could discourage potential whistle-blowers from coming forward with crucial information that physicians and the general public urgently need to make informed decisions about medical care.
The Association of Health Care Journalists has urged President Barack Obama to end inherited policies that require public affairs officers to approve journalists' interviews with federal staff. A letter sent to the Obama administration points out that such policies hamper newsgathering and make it difficult for reporters to fulfill their obligation to hold government agencies accountable.
The Association of Health Care Journalists supports full and timely public access to the results of government-funded research. It believes legislation introduced this month by U.S. Rep. John Conyers Jr. and others would constitute a blow to the public's right to access vital scientific data.
Concerned by incidents in which hospitals have attempted to restrict newsgathering, the Association of Health Care Journalists strongly urges reporters to resist signing confidentiality agreements with hospitals. Confidentiality agreements typically aim to bar journalists from disclosing information they discover in the course of reporting at a facility, unless they obtain the hospital's approval.
More than two-thirds of health care reporters taking part in a First Amendment survey have had stories held or left unpublished because the Food and Drug Administration did not respond to FOIA requests in a timely manner. Only a third of reporters said they received a response within the required 20 days called for in the federal Freedom of Information Act. Many waited months or years – or never received requested data, according to the survey and analysis conducted for the Association of Health Care Journalists by graduate students at Northwestern University's Medill School of Journalism.