Airing Dirty Laundry: Culture Clashes in Patient Groups

I've been thinking lately about what we can learn from culture clashes within groups of people living with various diseases. Patient groups aren't monoliths, but sometimes they're covered as if they are. Journalists don't always distinguish between people with Type 1 and Type 2 diabetes, for example. That's a bigger deal than you might think.

Here are a couple of culture clashes I've recently learned about, plus some thoughts on how these clashes can help inform your reporting.

1. 12-Step Anonymity vs. Living La Vida Facebook: People battling drug or alcohol addiction (or any other addiction, for that matter) have long been divided over whether to remain anonymous, as traditional 12-step programs suggest, or go public, which these days can mean sharing your recovery with hundreds of Facebook friends. In a provocatively titled post, Is anonymity the final shame frontier in addiction? Psychology Today blogger Adi Jaffe writes:

On an organizational level, I understand the need for anonymity to avoid having any specific member represent the group. But that logic only holds when everyone is told to remain anonymous. Otherwise, the entire group represents itself, which is, if nothing else, truthful. If one person slips, relapses, or goes into a homicidal rampage, it only makes the rest of us look bad if no one knows that millions others are "the rest of us."

By breaking our anonymity, we can help assuage our own shame and let everyone know that addiction is everywhere and that it can be successfully overcome.

2. People living with Type 1 and Type 2 diabetes have clashed over lifestyle and controlling the disease, with some of the most pointed discussions taking place on TuDiabetes.org, an online diabetes community. It got to the point where TuDiabetes founder (and ReportingonHealth advisory board member) Manny Hernandez had to create a video and blog post to directly address those clashes and ask each side to listen to, and learn from, each other.

Journalists can do the same. We should be alert to differences of opinion not just among medical experts but among patients as well. We should be specific, not general, in how we refer to a patient's medical condition. And we should always be listening to the realities of a patient's life and not assume those realities are the same for everyone.

Here's what Hernandez, who also is on ReportingonHealth's advisory board, suggested to me in an email:

Listening would allow journalists to pick up on ways in which these issues are felt and articulated by those who live with them. It could also allow them identify ways in which they can make a difference (in media coverage).

Is the disagreement something that gets in the way of the greater good for those affected by the larger issue?"

If so, Hernandez believes, that's might merit a story in itself, one that's more than "inside baseball" coverage.

What culture clashes among patient groups have you encountered? How did they affect your reporting? Please share your thoughts in the comments below.