Patience, Please: Tips for Patients Telling Their Stories to the Media

Published on
August 27, 2012

You receive a call at 5 a.m. on your cell phone from an unknown number. Before you can think better of it, you answer. The person on the other end promises you they have the story that will win you a Pulitzer Prize.

You are doubtful, but you listen.

The person then spends the next 90 minutes talking nonstop about what happened to them in a local hospital, how they are damaged for life and why multiple doctors and hospital administrators should be fired — or fired upon.

If you have experienced this scenario, chances are good you are a health writer.

The scenario above is real, and it is one of many ways that patients and their advocates can start off on the wrong foot with reporters. The writers and patient advocates in ProPublica’s Patient Harm Community have been talking on Facebook about how to effectively deal with the media, and the community’s creator – Marshall Allen – asked me recently for my thoughts. I thought I’d share some of them with Antidote’s readers, too.

My first set of tips for patients and their advocates is below. The next set will appear later this week.

1. Think about the scope of your story.

I am always interested in stories about patient harm. I’m the most interested in stories that have broader implications and that point up the possibility for meaningful change at the local, state or national level.

If a physician made a one-time mistake — even a mistake that had devastating consequences — it is horrible for the family, but writing about it won’t necessarily change anything. If a physician made the same mistake multiple times and no one did anything about it, that takes it to another level. If the hospital hid mistake after mistake after mistake, that’s another interesting angle that could prompt meaningful change.

2. Try to separate what you are feeling from what actually happened.

There are two big challenges to reporting on patient harm. First patients and their families can be emotionally distraught or angry, which tends to color their recollection of events and their ideas about what caused the harm. Second, patients and their families often think that no other story could possibly be as important as the story that they think needs to be told. And I can understand why. If I had gone through some of the things that the folks in the Patient Harm Community describe, I'd be preoccupied with that experience, too.

3. Document your story.

Patients often don’t have much documentation for what they are claiming. The first thing I tell a patient to do is get access to all relevant medical records. That includes any charts, lab tests, X-rays, doctors’ notes, nurses’ notes, and prescriptions. Often, the prescriptions alone tell much of the story. Make a clean copy to keep as evidence for yourself. Then spend some time going through another copy trying to identify the key areas that document the experience as you see it.Some things simply won’t be there, of course. What a doctor said to you over your child’s bed in a hospital room, for example. For those things, jot down whether there were other people in the room who could back up the story.  

4. Brace yourself for uncomfortable questions.

Interviews with patients require care and emotional resilience. Reporters are asking patients and their families to relive something hurtful in great detail. That’s arduous enough. If reporters are doing their jobs, they also will question some of the patients’ core assumptions about what happened to them.

I have made some patients angry by daring to ask how they know that a certain event happened exactly the way they describe it. My response: “As much as I like you personally and want to believe everything you say, there are millions of people out there who have good reason to distrust what they read. They aren’t going to believe what you say because they have never met you. That’s why I need proof.”

More tips to come on Wednesday!

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Patient Narratives: How To Get Them Right Even When Your Subjects Don't

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