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AHCJ opens dialog to improve journalists’ access to medical society meetings

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 AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

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.

Felice Freyer

Felice Freyer

At these meetings, reporters have to collect and digest complicated data presented in fast-moving talks. To ensure accuracy, reporters typically want to take pictures of slides and posters and tape-record presentations. At many meetings, this is not a problem. But some associations bar or severely restrict recording and photography.

The volunteer members of AHCJ’s Right to Know Committee sent letters to 10 organizations that have restrictions on recording or photographing presentations at medical meetings. The letters seek to open a dialog about these policies in the hope of working to improve them. These 10 societies are the first of dozens the committee intends to approach.

“We understand that medical societies have legitimate concerns about possible inappropriate commercial use of presentations, or disruptions from flashbulbs or bulky equipment,” said Felice J. Freyer, chair of the Right to Know Committee. “But many societies have found other ways to address these issues without barring journalists from documenting the presentations. Clearly, there are workable alternatives to the blanket restrictions on recording and photography.”

The Right to Know Committee researched the policies of the 87 largest medical meetings and found that 36 (41 percent) have minimal or no restrictions and 38 (44 percent) have restrictions. (The committee was unable to determine the policies of 13.)

“AHCJ members are just trying to get it right,” Freyer said. “We’re confident that medical societies share our desire for accurate coverage, and we hope to collaborate with them to find solutions that work for everyone.”

Freyer noted that the 10 letters were sent on Tuesday, and by Wednesday three organizations had already responded, expressing a willingness to consider AHCJ’s concerns.

Minority population swells in nursing homes

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.

In The Providence Journal, reporter and AHCJ board member Felice Freyer reports on the local effects of the national trend toward higher proportions of minority residents in nursing homes. In addition to the logistical concerns raised by this demographic shift, Freyer also explores what it says about health disparities and access to care in minority communities.

Faces of agingFreyer’s report is built on a Brown University study published in the July edition of Health Affairs. As you may know, free access to Health Affairs is one of the many benefits that come with your AHCJ membership.

… between 1999 and 2008, the number of Hispanics and Asians living in U.S. nursing homes grew by 54.9 percent and 54.1 percent, respectively, while the number of whites dropped 10.2 percent.

These numbers reflect the changing demographic profile of elderly people, whose ranks include growing numbers of blacks, Hispanics and Asians. But the researchers say their findings also raise questions about whether minority-group members have poorer access to assisted-living and community-based care. The question may be especially relevant as states such as Rhode Island strive to “rebalance” the long-term system to favor home-based care over institutional care.

Freyer’s story also includes data from Brown’s LTCfocus.org site, a handy tool for sorting and visualizing data related to long term care and nursing homes.

Expect developments in screening, treatment for hepatitis C

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 AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

This is a guest post from Felice J. Freyer, a medical writer at The Providence (R.I.) Journal. Freyer, an AHCJ board member, is one of 11 AHCJ-CDC Health Journalism Fellows visiting the CDC this week.

Felice J. Freyer

Felice J. Freyer

One in 30 people born between 1945 and 1965 – the Baby Boom generation – suffer from hepatitis C, a viral infection that can lead to liver cancer.

But the majority of infected people don’t know they have it.

That may change soon, and journalists should keep their ears perked for developments that will lead to good stories about hepatitis, Dr. John Ward, director of the Viral Hepatitis Program at the U.S. Centers for Disease Control and Prevention, told the AHCJ-CDC Health Journalism Fellows this morning.

The CDC is in the process of developing screening guidelines in the hope of encouraging more people to get tested for hepatitis C. Current guidelines call for asking people about risk factors, such as intravenous drug use, that many may not want to disclose or consider part of their distant past, Ward said. The new guidelines may be based on age and other factors rather than just behaviors, he said.

Additionally, the FDA is considering approval of a new, more effective drug against hepatitis C. “We are on the cusp of a revolution in hepatitis C treatment,” Ward said.

The 11 AHCJ-CDC fellows today completed the third of four days at the CDC, where they have met with CDC experts on food-borne illness, diabetes, influenza, health care-acquired infections and other topics, as well as touring the CDC emergency operations center and laboratories in Atlanta.

Other dispatches from the AHCJ-CDC Health Journalism Fellows:

Officials struggle with timing of outbreak alerts

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.

The Redding (Calif.) Record Searchlight‘s Ryan Sabalow put together a local take on ongoing inconsistencies in how local health departments release outbreak-related information to the public.

Sabalow brings the story home  with examples from local health departments and the story of  a child who died from bacterial meningitis in an area where a previous case had gone unannounced. In the first story, Sabalow explains the nuances of when and how certain health departments choose to disclose infections, and in the second he shows just how messy and inconsistent those standards can be in practice.

At issue is the struggle to find a balance between transparency and panic-causing cries of “wolf.” It’s an issue AHCJ has tackled before, most notably during the 2009 H1N1 outbreak when disclosure varied wildly from department to department.

Felice J. Freyer, a health reporter at the Providence Journal in Rhode Island who heads the Association of Health Care Journalists’ Right to Know Committee, said a perception of secrecy is the last thing health officials need when they’re urging people to take steps to protect themselves from a disease.

“You can’t sustain the public’s trust if you run and hide,” Freyer said. “That’s what it looks like, whether that’s what’s happening or not.”

Freyer said AHCJ members have been in talks with the Association of State and Territorial Health Officials. The nonprofit health organization has agreed to meet with the AHCJ to determine whether a nonbinding set of national guidelines can be developed.

Somewhere at the other end of the spectrum is Dr. Rob Hamilton, head of a Redding hospital’s emergency department.

Hamilton said he empathizes with public health officials in holding back until a case is confirmed.

One false alarm about a suspected meningitis case could potentially flood an already crowded emergency medical system with dozens of scared patients who don’t have meningitis but are demanding expensive, potentially dangerous and time-consuming spinal taps, he said.

Related

Kim Archer of the Tulsa World has been covering an outbreak of meningitis that has killed two children and made at least five others sick. She talked to school and health officials about the public health response to the outbreak and compiled a timeline of the outbreak and response.

Groups give Obama “A” for openness despite barriers between journalists, federal experts

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.

A coalition of reform groups, including Common Cause, Democracy 21, the League of Women Voters and U.S. PIRG, recently issued “A Report Card from Reform Groups on the Obama Administration’s Executive Branch Lobbying, Ethics and Transparency Reforms in 2009.” The administration gets high marks in a number of categories, including an “A” for open government. The report card, however, seems to overlook an issue of particular interest to health care journalists.

The groups praise the administration’s “unprecedented steps to implement Executive Branch transparency,” steps they said include the disclosure of official visits to the White House, the publication of stimulus and other government contracts online and the administration’s “presumption of disclosure” approach to FOIA requests. They also note a few shortcomings, including the administration’s reliance on Internet-only avenues of disclosure and time lags in the availability of some information.

According to AHCJ’s Right to Know Committee, there’s another shortcoming those reformers missed in their report card: Restricted access to federal employees. AHCJ has already requested that the administration reverse inherited policies that allow federal public information officers to restrict the access the public has to federal experts, and while committee representatives praised the administration’s move toward a more open government, they don’t think this particular obstructionist policy should be ignored.

By way of explanation, here’s an excerpt from a letter sent by Right to Known Committee Chair Felice Freyer and AHCJ President Charles Ornstein to the groups responsible for the report card.

… we wanted to make you aware of another issue the administration has yet to address: the continuing difficulty that journalists face in speaking with federal employees. Under policies that have intensified over the past 15 years, public information officers often block or delay our access to the people who have the facts needed to inform the public.

This is not just a matter of reporters looking to make their jobs easier. It’s a question of our ability to tell the public what federal employees are doing with taxpayers’ money and to report on important research and public health issues. Many times staff members are eager to talk with us, but they require permission from public information officers. The PIOs sometimes simply say “no.” Or they never call back. Or they tell the reporter to wait for the official news release. Many insist on listening in on interviews, ensuring that staff will stick to the “official story.”