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Medical Journalism And The Patient’s Voice In The Media

July 18th, 2011 by Elaine Schattner, M.D. in Opinion, Research
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Yesterday’s post was not really about Avastin, but about medical journalism and how patients’ voices are handled by the media.

L. Husten, writing on a Forbes blog, cried that the press fawned, inappropriately, over patients’ words at the FDA hearing last week, and that led him to wonder why and if journalists should pay attention to what people with illness have to say, even if their words go against the prevailing medical wisdom.

There’s a fair amount of controversy on this. For sake of better discussion in the future, I think it best to break it up into 3 distinct but inter-related issues:

1. About health care journalism and patients’ voices:

A general problem I perceive (and part of why I started blogging) is how traditional medical journalists use patients’ stories to make a point. What some of my journalism professors tried to teach  me, and most editors I’ve dealt with clearly want, is for the reporter to find a person with an illness, as a lead,  and then tell about the relevant news, and provide some expert commentary – with at least one person speaking on each “side” of the issue, of course – and then end the story with some bit about the patient and the future.

I argue that this form of medical journalism Read more »

*This blog post was originally published at Medical Lessons*

Patient Stories About Hair Loss

July 10th, 2010 by RamonaBatesMD in Better Health Network, Health Tips, Patient Interviews, True Stories
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The New York Times has a series called “Patient Voices” which gives insights from the patients with the disease, physical and emotional changes in their lives, and accommodations made. The most recent series is on patients with alopecia (hair loss).

“The Voices of Alopecia” by Tara Parker-Pope (July 6, 2010):

This week, Patient Voices explores alopecia, an autoimmune disease that leads to a few bald patches to the loss of every hair on a person’s body.

To hear what it’s like to live with alopecia, listen to the Patient Voices audio slideshow that features adults, children and their parents who are coping with the condition.

Listen to these seven people tell what it’s like to live with alopecia:

– Matt Kelly, 43, lost his hair at age 38 over a 6 week time span.

– Jennifer DeFreece, 29, developed alopecia totalis as a child.

– Margaret Staib, 42, an artist with three daughters.

– Rafi Wasselman, 16, says his best medicine is his collection of caps.

– Maureen McGettigan, 47, began losing her hair at age 16.

– Annie Kazmi, 33, tells her daughter Noori’s story. Then Noori tells her own. Read more »

*This blog post was originally published at Suture for a Living*