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

On Monday, I shared some advice for patients and patient advocates who are trying to explain their story to a reporter. More tips are below.

5. Don’t go conspiratorial.     

The biggest red flag for me when talking with a patient or a patient advocate is a conspiracy theory. These usually start with, "I don’t want to sound like I believe in conspiracies, but…" The government did it. The drug makers did it. The big company wanted to get rid of one of its star employees because he was making everybody else look bad.

This doesn’t mean that people may not have tried to cover up a mistake they made. That happens all the time. A doctor may have persuaded a nurse to alter the notes on a chart to make it look like the doctor made the right call during a surgery. But that doesn’t mean that the hospital’s owners (four states away), the insurance company that paid for the surgery, and the federal government were all involved, too.

6. Think about what you want.

What are you trying to accomplish by having your story told? Are you trying to get a doctor’s license revoked? Are you trying to win a court case against a hospital and hoping that a news story will put pressure on the hospital? Are you simply hoping the reporter will be able to find answers to what happened that you have not been able to find? (This is the most common reason, in my experience.)

7. Recognize that you and the reporter have different agendas.

Whatever your end game is, you need to recognize that the reporter primarily is interested in telling a good story that will have an impact. You two may get along during the process of the reporting, and may even seem to a friendly rapport. But your agendas are different.

8. Have patience, please.

Your story may be hugely important to you, but it’s likely one of two or three patient stories the reporter will hear that day and one of hundreds he or she will hear in the months to come. A reporter could write about nothing but patient harm and never get to all the great patient stories. I promise you. I have tried, but every time I write one, I put dozens of others on hold.

I read my email (askantidote@gmail.com) every day, and I try to respond to every email. Some days I have a flood of messages, particularly when I write about a topic that strikes a nerve. So I do miss things. If you don’t hear from a reporter, write them again. If you don’t hear a second time, they’re just being rude.

When a writer does agree to work on your story, recognize that to write about patient harm accurately and effectively is extremely difficult. If patients and their families obtain copies of their medical records, the reading alone can take weeks to read, organize and decode. In a perfect world, you would have independent experts in the relevant specialties review the records to help you interpret them. That can take weeks, too.

If you take some of the steps I’ve described above, though, you have a much greater chance of making your voice heard.

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