Updated see below
The California Endowment has a new enterprise, Reporting on Health, which includes journalism fellowships and blogs.
One of the fellows is William Heisel; his blog is Antidote: New Ways to Investigate Untold Health Stories.
His advice for reporters, drawn from the lessons of the Wakefield fraud, in seven parts:
Wakefield's Wake, Part 1: Media should help undo damage from vaccine-autism hoax a description of the sources Deer used for his BMJ pieces:
These documents and the rest used by Deer are great guideposts for health writers, bloggers and investigators hoping to fix what Wakefield and his colleagues have broken.
Wakefield's Wake Part 2: Passionate parents of autistic children can be tricky sources.
This should serve as a lesson to health writers everywhere never to assume that the research subjects involved in a study actually saw the outcome of the study. Those subjects, should you be able to track them down, could provide the necessary evidence for verifying – or disproving – the study’s findings or probing flaws in the study’s design.
Wakefield’s Wake, Part 3: Trust parents of autistic kids, but verify stories with health records note: this is sound advice for all unusual health claims, not just the "something caused autism" story. Two things to keep in mind: "correlation does not equal causation" and "anecdotes are not data, even in the plural".
As research has shown, self-reported health information is often flawed. Most parents — including McCarthy — aren’t trying to deceive anyone. When talking to a reporter, though, they may not be able to, on command, provide the clearest picture of the dates, symptoms, test results and other medical facts involving their child.
Wakefield's Wake, Part 4: Overcome confidentiality rules used to hide shaky science
....reporters need to push past glib suggestions that parents are wrong to be talking about these issues or that reporters are wrong for talking with the parents.
One of the ways I have pushed past is by asking people if I can talk with their doctors directly and providing them with a release form to sign. I created a short form years ago based on a standard form that has been used by hospitals and physicians to allow patients to waive HIPAA protections. The terminology is important. You want to make it clear to patients and their parents that they are protected by HIPAA from having their private medical information disclosed and that by signing this form they are waiving those protections for the purposes of providing you information for a story.
Wakefield’s Wake, Part 5: Treat advocacy groups with a healthy dose of skepticism
So what’s a health writer who wants some good contextual quotes to do?
First, stop dialing groups for a quote just because their name sounds on target. Placing “American” in front of something doesn’t make it a truly national or nationally representative group. Including “autism” in a name doesn’t mean that the group is involved in serious work to find cures and treatments for autism disorders.
Second, treat these advocates the way you would any other source. I mentioned this before with parents, and it is worth repeating. Don’t let advocates make bold claims without proof. Robert Goldberg, author of Tabloid Medicine, posted a great video about what reporters should have said when interviewing Jenny McCarthy, who, as everyone knows, has her own advocacy organization: Generation Rescue.
Third, find out who is paying the bills. If they are registered as a nonprofit, they have to file a Form 990 with the IRS, and you can ask them for a copy, ask the IRS for a copy or look it up on Guidestar. If they are not registered as a nonprofit, that’s odd and should make you ask even more questions.
I would add: this advice holds true not just for autism, but any "miracle cure" for conditions that are defined qualitatively -- like learning disabilities.
Update:
Wakefield's Wake Part 6: Don't call it a witch hunt: Scientists who perpetrated autism-vaccine scare should be called out
...A witch hunt, of course, implies a band of crazed bigots and fear-mongers falsely accusing someone of a socially unacceptable act. Charges are trumped up. A trial is hastily put together. Witnesses lie. And the witch is burned at the stake.
Even as metaphor, this doesn’t work in the Wakefield case or others like it. Government investigators and journalists like Deer didn’t try to pin some false crime on Wakefield. As Deer puts it: “The regulator’s main focus was whether the research was ethical. Mine was whether it was true.”
Take-away lessons for journalists
- Follow up by writing about scientists who have cited work by discredited scientists
- Question out-of-nowhere advances in science and medicine
- Follow up by writing about who decided to fund, support and publish the discredited research. Hold the decision-makers accountable.
Wakefield's Wake, Part 7: Blowback can be fierce and frightening for autism-vaccine stories
It underscored for me that journalists who take on vaccine conspiracy theories and other controversial topics need to prepare themselves and their editors for blowback.
Parents who are advocating for their children are fighters, as they should be. But they can start to develop an us-versus-them mentality.
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