Guidelines for releasing information in public health crisis still in the works
Filed under: Health journalism, Health policy, Public health, Public records
When North Carolina officials recently announced the death of a teenager as a result of the flu but gave out little other information, reporter Rose Hoban, R.N., of North Carolina Public Radio, had a sense of deja vu. Hoban is a member of AHCJ’s Right to Know Committee, which has dealt with exactly this issue.
Some background:
During the H1N1 pandemic, reporters found a wide variation in what information local and state health officials were disclosing about H1N1 deaths. As a result, representatives of AHCJ, including Hoban, met with health officials representing the Association of State and Territorial Health Officials and the group agreed on flexible guidelines specifying what information should be released about victims in a public health crisis.
Last week, Hoban filed an update about the issue on her blog with comments from Gene Matthews, who is a senior fellow at the North Carolina Institute of Public Health and was the lead counsel for the CDC for 25 years. She also checked with ASTHO about the status of the draft guidelines and was told, “I don’t think it’s going to disappear, fall into oblivion …”
International cooperative to share health data
Filed under: Europe, Health data, Health policy, Hot Health Headline, Public health, Public records, Tools
Writing that “the importance of data sharing in advancing health is becoming increasingly widely recognised,” 17 major public health players entities, from the CDC and AHRQ to the Bill and Melinda Gates foundation and the World Bank, have banded together to form a sort of data cooperative around the Wellcome Trust and the Hewlett foundation. In a Lancet commentary announcing the initiative, Wellcome director Mark Walport and Hewlett president Paul Brest write that, while fields such as genetics and molecular biology, a mature data-sharing system has sped up discoveries and increased efficiency, public health is lagging behind.
Much of the infrastructures, technical standards, and incentives that are needed to support data sharing are lacking, and these data can hold particular sensitivities. And some researchers are reluctant to share data. Too often, data are treated as the private property of investigators who aim to maximise their publication record at the expense of the widest possible use of the data. This situation threatens to limit both the progress of this research and its application for public health benefit.
Each organization will work within its own structure and their initial goals include the creation of data standards to facilitate sharing as well as increasing the prestige of creating public data sets. They acknowledge there will be some bumps along the way, but call on other organizations to join the initiative and to pursue the long-term goal of the widespread, fair and privacy-respecting sharing of public health data.
Researchers examine long-term effects of vitamins, vaccines on children’s immune systems
Filed under: Children, Europe, Hot Health Headline, Public health
For a 40-minute documentary broadcast on BBC Radio 4 and produced by Anthony Baxter, reporter Richard Phinney visited a small, long-running public health outpost in Guinea Bissau where a team of Danish and African researchers has studied the long-term effects of vaccines and vitamin supplements on the immune systems of children. The team has published reams of research and influenced WHO policy, but Phinney focuses on what he calls their most “explosive” findings.
They show that the world’s most commonly used vaccines can strengthen - or weaken - a child’s immune system in the long term, and affect their ability to fight off disease. The results directly challenge the WHO’s global health advice, followed by most countries in the developing world, and could mean that thousands of young lives, in Africa and beyond, are needlessly at risk.
Programming note: The program will only be available to download worldwide for a few more days.
Update: The audio is no longer available at the earlier link but it is available, in two parts, on this page. Search the page or scroll down for “Vaccine Detectives.”
Lack of vaccination, awareness worsen UK flu season
Filed under: Europe, Government, Hot Health Headline, Public health
The Guardian’s Denis Campbell and Sarah Boseley report that a drop in vaccination rates and a lack of public awareness has made this flu season worse than it should have been, and that there is potential for the NHS to be “inundated” with flu cases. The story has spread quickly in the UK, and may be providing just the sort of public awareness campaign that the reporters found was previously lacking.
Professor Steve Field, who until last month was the chairman of the Royal College of General Practitioners, spoke out as the Department of Health revealed there are more than 300 people in critical care beds with flu and 17 people have died.
Field said the decision not to encourage the public to have a jab to protect themselves was “ill-advised” and needed to be urgently reversed.
The NHS should have acted more decisively to encourage people to have the jab because it was known that H1N1 swine flu was still circulating and that few NHS staff had the swine flu vaccine when it was offered to them late last year.
Related
For more European health news, see AHCJ’s Covering Europe initiative.
Fellows learn about BRFSS data on trends in health
This is a guest post from Lara Salahi, of ABC News. She is one of 11 AHCJ-CDC Health Journalism Fellows visiting the CDC this week.
I’ve been assigned the disease topic, perhaps even given the gist of the headline. And now I’ve got a few good hours to meet my deadline.
The 2010 AHCJ-CDC fellows take a break from their busy week in Atlanta. They are: (front row) Raymond Hainer, Health.com / Time Inc.; Meredith Matthews, Current Health Teens magazine/Weekly Reader; Ruby de Luna, KUOW-Seattle Public Radio; Kevin McCarthy, Consumer Reports/Consumers Union; (second row) Margaret Haskell, Bangor Daily News; Felice Freyer, The Providence Journal; Katherine Harmon, Scientific American; (back) Lara Salahi, ABC News; Rong Lin II, Los Angeles Times; Miranda Van Gelder, Martha Stewart Living; and Jori Lewis, freelance journalist & radio producer.
The patient story: compelling.
The expert opinion: piece of cake.
But finding accurate and current data that will pull the story into perspective? Suddenly I can hear the minutes taken from writing ticking away, one hour of research at a time.
Chalk this scenario up on the list of “You know you’re a daily reporter/producer when…” you’re the only one who wishes there were more hours in a workday.
Readers and viewers want to know how common a health issue is in their state, or whether a health trend has increased or decreased over time.
The CDC website is so expansive; it’s hard to tell where to start. But the Behavioral Risk Factor Surveillance System, or BRFSS, is a quick link to bookmark. BRFSS publishes annual prevalence and trends data on health issues such as diabetes, health care access, and oral health.
Lina Balluz, acting director of the Division of Behavior Surveillance at the CDC’s National Center for Chronic Disease Prevention and Health Promotion, walked the AHCJ-CDC Health Journalism Fellows through finding the analyzed self-reported data from telephone-based questionnaires.
BRFSS is one of the fastest data collection methods analyzed on a given health issue, said Balluz. The system includes national data, stratified by states. It’s one tool that may help add perspective to a story and cut the time spent searching.
Editor’s note: For help finding additional information on the CDC website, we recommend AHCJ’s “Navigating the CDC: A Journalist’s Guide to the Centers for Disease Control and Prevention’s Web Site.”
Other dispatches from the AHCJ-CDC Health Journalism Fellows:
- Expect developments in screening, treatment for hepatitis C
- CDC: Cholera has spread throughout Haiti
- Diabetes project coming from the CDC
AHCJ-CDC Fellows learn about diabetes project
Editor’s note: This post, from the AHCJ-CDC Health Journalism Fellows‘ visit to the CDC, originally reported the CDC is close to launching a diabetes project. In fact, the National Diabetes Prevention Program launched in April 2010 and the CDC continues to expand the program, which currently has 28 sites.
The Diabetes Prevention Program clinical trial, according to the CDC, is “designed to bring evidence-based programs for preventing type 2 diabetes to communities. The program supports establishing a network of lifestyle intervention programs for overweight or obese people at high risk of developing type 2 diabetes,” including dietary changes, coping skills and group support. More information about lifestyle interventions is available from the YMCA and UnitedHealth Group.
More about the visit to the CDC:
Meredith Matthews, of Current Health Teens magazine/Weekly Reader, wrote a blog post wrote about the visit, reporting that the fellows visited the CDC’s emergency operations center, which is monitoring the cholera outbreak in Haiti. They also heard from CDC director Thomas Frieden, M.D., who Matthews says answered all of the fellows questions.
Other dispatches from the AHCJ-CDC Health Journalism Fellows:
- CDC: Cholera has spread throughout Haiti
- Expect developments in screening, treatment for hepatitis C
CDC: Cholera has spread throughout Haiti
Ron Lin, of the Los Angeles Times, reports that cholera has spread throughout Haiti, according to CDC officials speaking to the CDC-AHCJ Health Journalism Fellows in Atlanta yesterday.
The disease, caused by a bacteria that spreads through tainted drinking water, also is turning up in the Dominican Republic. A Dec. 8 Morbidity and Mortality Weekly report says 91,770 cases have been reported nationwide and 43,243 patients had been hospitalized. More than 2,000 have died.
At a community training event in Haiti, aid workers demonstrate how to make a rehydration solution for a patient with cholera.
Photo by EDV Media Director via Flickr
The report comes a day after the Associated Press reported that a contingent of U.N. peacekeepers was the likely source of the cholera outbreak, citing a report written by a scientist who was sent by the French government to assist Haitian health officials.
Soldiers who arrived at the U.N. base, upstream from where the first cases of cholera were reported, soon before the cholera outbreak came from Nepal, according to the story.
Dr. Jordan W. Tappero, director of the Health System Reconstruction Office at the CDC’s Center for Global Health, did tell reporters that the CDC did analyze the cholera strain in Haiti and identified it as a strain that is circulating in South Asia.
Lin is one of 11 AHCJ-CDC Health Journalism Fellows visiting the CDC this week. The fellows are attending sessions on epidemiology, global disease prevention efforts, pandemic flu preparedness, climate change, vaccine safety, obesity, autism and have toured the CDC director’s National Emergency Operations Center.
Other dispatches from the AHCJ-CDC Health Journalism Fellows:
Expect developments in screening, treatment for hepatitis C
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
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, journalists agree information key in public health crisis
When the H1N1 pandemic first hit in the fall or 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.
At AHCJ’s request, ASTHO hosted a meeting on Oct. 8 at which reporters and health officials hashed out their concerns and reached common ground. The daylong meeting at ASTHO headquarters outside of Washington, D.C., was attended by health officials from the D.C. area as well from Alabama, Michigan, Rhode Island and two federal agencies. A state health official also participated by speaker phone from Tennessee. AHCJ was represented by journalists Charles Ornstein, Rose Hoban and Felice Freyer.
Health officials readily accepted the premise that openness is essential to maintain public trust, said Freyer, who chairs the Right to Know Committee. But they explained their worries about what the media might do (and have done) with the information released, such as scouring obituaries to deduce who died and distressing families by showing up at funerals. AHCJ agreed to advise its members that it is unethical to violate victims’ privacy without permission. Read more …
Community-led effort sparks public health wave
Filed under: Health policy, Hot Health Headline, Public health
Writing in The New York Times, Jessica Reaves writes about how a 2000-06 Chicago community survey embodies the block-by-block, community-reliant approach to public health that it helped inspire.
In the heavily Puerto Rican Humboldt Park neighborhood, researchers worked with community leaders to write study questions, then relied on community members to conduct the actual survey. From these roots, the level of community participation snowballed, and locals demonstrated an interest and investment in public health that researchers hasn’t seen before. Today, initiatives born out of that study still provide residents with access to fresh produce, free diabetes screenings, fitness classes and more.
Now, researchers are further localizing and intensifying their effort with a block-by-block approach. The Humboldt Park model has become one that others are working to replicate across the country.
The specifics of the Sinai approach (In Humboldt Park) — change-oriented and invested in the fate of a neighborhood — are distinctive, but they also reflect a sea change in the overall strategy of public health professionals, said Janine Lewis, executive director of the Illinois Maternal and Child Health Coalition, a nonprofit advocacy organization in Chicago.
“I think the field is becoming more responsive to the idea of community-based participatory research,” Ms. Lewis said. “Those of us in the field realize that community members are experts on the needs and gifts in their communities, and should be consulted” at every phase of research.
This approach, she added, not only helps investigators devise more meaningful questions, but also means residents feel a part of the process and motivated by the results.
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