One of the models being talked about for its importance to journalism’s future is the collaboration between journalism schools and public news organizations, particularly non -profits.
Today, Thursday, Neon Tommy, one of the student run online publications coming out of the Annenberg School of Journalism demonstrated a case in point with their exploration and analysis of swine flu deaths in LA County, yet did it without the aid of an outside news agency.
Around 30 students worked on the package, which consists of an overview of the deaths, what they suggest in the way of patterns and a sharp look at LA County’s shifting policy of secrecy about its records, portraits of seven of those who have died, plus a legal analysis of what LA County and other counties in the state have an obligation to tell us about who exactly is dying from the swine flu. (There is also a map of where the deaths occurred in the county.)
Just to give credit where credit is very much due, the students who worked on the swine flu package are the following.
Reporting staff: Hillel Aron, Briana Galper, Catherine Cloutier, Sharis Delgadillo, Bethany Firnhaber, Jessica Flores, Michael Green, John Guenther, Stephanie Guzman, Neila Jamee, Julia James, Olga Khazan, LeTania Kirkland, Len Ly, Meghan McCarty, Jaclyn Matthews, Jonathan Polakoff, Natalie Ragus, Walter Redmond, Rob Schwandt, Madeleine Scinto, Callie Schweitzer, Amy Silverstein, Susannah Snider, Amanda Tran, Christine Trang, Jessika Walsten and Kelly Williams.
Editors: Mark Evitt and Richie Duchon
Map design: Kim Nowacki
By the way, just so you know, to my knowledge, this project was not part of a class assignment for anyone. (I know it wasn’t for those of my students who worked on it.) The Annenberg reporters simply did the work in their spare time because they wanted to learn and believed the reporting was important.
Took a quick peek at the story, no time for more right now. GREAT topic – the NIH is giving out so much conflicting info about who’s at risk and why they’re of no use. But I’m not sure how to feel about their strategy of getting hold of 44 Death Certificates and then tracking down and interviewing family and others. Interesting fact that half of them didn’t know the cause of death, but yikes! I’d hate it if that happened to me after a loved one died. And I would NOT want my name and details released – the only thing that’s relevant from a public safety standpoint, are stats put in a general way. I’m looking at this from the point of view of a privacy violation – we have WAY too much of that already in every way.
(KCRW ran an interesting series over the last few days about how much of our presumably personal info IS “out there” because privacy laws haven’t changed much since the 80’s, despite the creation and explosion of the net, info-gathering by our phone and cable providers, electronic medical records, etc. There’s too much stuff that’s a boon to ID thieves, unwanted marketers and just plain busy-bodies. Maybe these students being raised in an age when they never knew any different, think it’s “normal,” but no thanks. One example used on the show was how drug companies marketing, say, a drug for certain kidney problems, can buy a list of anyone who uses the drug from pharmacies — our laws allow that, shockingly — and direct market to them. So anything that’s posted online about Swine Flu victims or patients who survive, will be “out there” forever and accessed and used in unlimited ways. Actually, I’m with those who forecast that in the NEXT decade, one of the most sought-after services will be REMOVING stuff from the net.)
HOWEVER I do agree with the basic premise, that the government and medical community has done a lousy job of profiling who’s at greatest risk and helping us prepare. They said it was a “young person’s disease,” affecting those college age and under; but flu vaccine’s only being released first for those under 12 and pregnant women. The elderly were allegedly protected, due to previous exposures to the virus, but now we’re hearing that 1/3 of the victims are over 50, mostly over 65, and that obesity is a major contributing factor, so the obese “elderly” however that’s defined, are at great risk too. (Weight is also FINALLY being mentioned as a major factor in certain cancers, like breast and kidney, instead of just age as the lazy AMA guidelines still stress – about time someone injected a smidgeon of common sense and realized that obesity and lifestyle changes make a big difference, instead of lumping everyone over 50 into one homogenous group, from the Sharon Stone/ Michelle Feiffer types to the truly elderly and decrepit. Determining insurance premiums based solely on this crude age breakdown is also grossly unfair – and unique to America.)
An evening news bit I caught about the swine flu hitting older folks too, showed a handful of clearly overweight patients as young as their early 50’s, even as a doctor was opining that it’s generally just higher risk to those over 65. Kudos to the students who seem to be getting at this sort of distinction by asking relatives about victims’ lifestyles and habits – BUT in general, that should be info collected by healthcare professionals and confidential government sources for correlation, while preserving privacy. I’m a BIG supporter of the HIPPA privacy laws that do exist, and worry that electronic records aren’t safeguarded enough as it is.
Kudos to the students for singling out something that has important real-world implications because many who may be at risk have been given a false sense of security and haven’t been prioritized for the vaccine. Neither have healthcare workers who give the shots. Then there’s the issue of how many shots are needed: 3 or just 1, we’re hearing now, may be enough. Add to this, it seems at least one cat has a confirmed case – unlike other flu viruses which can’t be passed between humans and animals.
P.S. The Times’ story today on delivery of flu vaccines to those defined as high risk groups (as defined by the NIH or CDC or whoever) excludes those over 65 altogether, which is absurd, since many are getting sick and when they do, often more seriously, as with any flu. Those 25-64 are considered high priority only if they have “certain medical conditions,” not listing obesity which is now known to correlate across age groups. Really makes you wonder what else the government is totally misleading us about. (Certainly there’s not enough warning for those traveling abroad in areas with high numbers of vaccine-resistant hepatitis, etc.)
I’m the reporter who wrote the overview piece, and let me tell you, this project was truly eye-opening. As you said, WBC, the information being released was contradictory, and we hope that this project clears up a lot of confusion for people.
This project put a face on the virus. Instead of looking at these people as numbers as much of the media has, we looked at them for who they were as people. Everyone has a story, and we were lucky to tell these ones. There’s something about all of these people that you can relate to–be it their age, interests, profession, family life, the list goes on. If that doesn’t make you think about protecting yourself or your loved ones from the virus, I don’t know what will.
Celeste–thanks for posting the story. And you’re right when you say that we reported the story because we knew it was important. We can hope this will be a great wake-up call for people.
By the way – the woman quoted in the article, alleging that HIPAA (the patient privacy act, enacted in 1996) was intended only to cover electronic records is THANKFULLY very wrong. In ’96 the net was in its infancy and no one could have predicted the personal info “out there” now.
HIPAA covers the gossipy office assistants at the doctor’s and dentist’s office, the ones who blurt your personal info to colleagues for fun or in front of other patients because they have no discretion; the nurses and hospital staff, people at the pharmacy, etc. etc. And tells them they’re not supposed to release or sell your info except under very limited circumstances.
BUT in fact, it’s still way too easy to get around these prohibitions, as “need to know” can include a temp or P/T scheduler who has access to your SS# and detailed history, as your chart floats around the office, etc. There are still way too many offices where employees are unaware of privacy restrictions, and patients don’t remind them.
Still too many legal loopholes to sell our medical data WITH SS#’s, DOB, credit info etc. to marketers without our knowledge. And above all, privacy laws across the board need to come out of the dark ages of the 80’s to cover the TMI-spewing present. In the 80’s, in order to get records like Death or Birth certificates, someone had to physically go to the Cty Clerk’s office, and it was a laborious, manual project which tended to deter fraud. NOW everyone’s data is for sale on the net, from pharmacies to hospitals to our banks giving our data to affiliated car dealers looking to sell cars to people of a certain age with good credit (with your SS#), unless you know to demand to Opt Out @Level 3 in Calif., even to those who wish us ill.
The gray areas you note like, a patient’s rights are protected but NOT once the person dies, make no sense. Good for hospitals who say otherwise, or they’d have paparazzi like vultures hanging out waiting for a celebrity to die. (They do anyway, but aren’t guaranteed full access to patient files, thankfully.)
Again, kudos for identifying a vital health area where the CDC gives out incomplete, conflicting and even seriously misleading info, but that doesn’t justify or necessitate violating patient privacy – the families of the 7 you profile apparently gave permission and participated freely, so that’s fine: but were some others you tracked down from death certificates surprised at the intrusion? Did some not want a stranger to try to summarize a loved one’s life? Of course your intentions are good, but pls. think again about the flip side of what you feel is “the public’s right to know,” to get a story. I sure wouldn’t want some stranger to try to “capture” me and post whatever they found out about me.
BTW, DID you come up with any statistical data which can help? It’s hard to tell from the photos, but it seems that many of the victims — from children to younger adults — were obese, overweight or two cases at least, as noted, weakened from other long-term medical conditions. It’s terrible for our health officials to whip us into a frenzy of concern but to have to look to other sources for the real bottom-line.
Am enjoying the extra commentary, WBC—and, of course, Callie.
By the way, Callie, I thought your writing on that main piece was excellent.
I thought it was a very well done piece – I wish more reporters would pay that much attention to detail.
However, the data they “uncovered” was not at all a mystery to me – a medically informed layman who keeps up with the news.
It would be appropriate for the article to state that of the three categories of risk, ONLY the first group (kids of various categories, and for some odd reason, their caregivers) are eligible to receive vaccine. Those of us in the middle risk group just have to wait.
It would be a good follow-on project to investigate why there is a vaccine shortage. Hint: the government screwed up badly, although given their short time in power, not much of that can be layed at the feet of the Obama administration (an experienced administration would be very much at fault).
The problem is our overly cautious FDA, which only allowed vaccines that are:
1) made the old fashioned way – using virus grown on chicken eggs – instead of the modern cell culture methods
2) without adjuvants, which allow substantially more vaccinations to be done with the same amount of virus
3) fully effective in a single dose
It would also be instructive to examine why all of the vaccine is coming from European companies, which, in a more serious emergency, would be ordered to not ship outside of Europe. The answer is that the US legal system and government policies, over the years, have pretty much destroyed the American vaccine industry.
Finally, I think people should be informed that in some European countries, there is no shortage at all of the vaccine. Why are Americans dying due to vaccine shortage when Europeans in those countries are not?
These questions are especially timely given this weeks push for the government to take over a much larger part of our health care system.