Series shows how preemies affect families, society

Jan. 5th, 2010 by Andrew Van Dam · 1 Comment
Filed under: Health journalism, Hot Health Headline 

The Providence Journal has published the final installment of The Price of Miracles (table of contents), a broad print and online explanatory effort spearheaded by AHCJ board member Felice Freyer. Freyer put the package together over the course of more than a year with the help of a fellowship from the Kaiser Family Foundation.

Freyer’s work was released in six chapters, each of which contained between three and six stories, as well as online components and photography. Chapter one presents both the wide view and an instructive and emotionally intense profile of a family facing the fate of their premature son. In subsequent chapters, Freyer takes an in-depth look at another specific case, considers disparities in premature birth, profiles the medical professionals who keep premature babies alive and ends on a hopeful note, examining advances in the care of premature babies and following up on the lives of some of the children profiled earlier in the package.

Here, Freyer explains how the massive effort came together, and how she found the time to put together a long-term project amid the daily pressures of a downsizing newsroom.

Each time we published in print, the latest story would be added to the online project. An unusual aspect of the project was the way we developed the online “container” to accommodate continuing additions. It took a few tries, but we finally came up with a design that would indicate that future stories were coming while clearly displaying what was already there. We also found ways to keep viewers anchored, aware of the options, and able to navigate among the many different parts without getting lost. We had many online-only features, including videos, slideshows, interactive graphics and “audio snippets,” in which readers could click to learn more in the voice of a person in the story.

Fellow reporters might be interested to know that I never had a block of time to do this, but worked on it while still covering my beat. In these times, I didn’t think I’d be allowed to go “off staff” for months on a project. So even while I was on the Kaiser fellowship, I continued to work at the Journal, setting aside one to three days each week for preemies. After the fellowship ended, I carved out time as I could to complete each chapter. (For example, there was a three and a half month gap between chapters 5 and 6 – because I was busy covering swine flu.) This project also involved a team of highly creative Web and visuals people who continued to work with me through some our paper’s toughest times, including two rounds of layoffs.

Tags: , ,

Hoban reports on uneven H1N1 death disclosure

Dec. 9th, 2009 by Andrew Van Dam · 1 Comment
Filed under: Health data, Health journalism, Hot Health Headline, Public health 

WUNC reporter and AHCJ member Rose Hoban put together a story about uneven disclosure of H1N1 deaths by public health officials and the possible benefits and risks of providing more information. In the end, Hoban reported, it comes down to balancing individual privacy and the public interest.

On the official side, Hoban spoke to Megan Davies, M.D., North Carolina’s epidemiologist, who referred to the lack of a “compelling public health need” to provide H1N1 death data on a county-by-county level, pointing out that in many areas it would be easy for locals to take that information, match it with recent death records and come up with the name of the infected person. Davies said that, in cases like that, she fears the infected person’s family would be stigmatized.

“The fear of contagion’s a really primitive thing that comes up in people,” Davies said.

Additionally, Hoban says, officials are bound by medical ethics, state laws and federal health privacy regulations (which, she notes, generally don’t cover people who are already dead).

For another perspective, Hoban spoke with AHCJ board member Felice Freyer of The Providence Journal. Freyer discussed AHCJ’s report that disclosure had been uneven across the country, and said that officials should share information unless there’s a compelling reason not to.

“Public health officials can’t do their job if they don’t have the trust of the public and no-ones going to trust them if they hide information for no reason,” Freyer said.

Former CDC lead legal counsel Gene Matthews agreed, noting that “Too little information can be a bigger headache than too much.” According to Matthews, this problem has been exacerbated by the Internet where, “If the public health officials don’t provide enough information, the outsiders will simply make it up.”

Tags: , , , , , , , ,