This week, our patient safety team presented at Consumers Union’s Safe Patient Summit. The group of patient advocates, many who have personal stories of being harmed while undergoing medical care, gathers every year, and often invites journalists to talk about their work.  

Of the 40 or so people in the room, one expressed her frustration over the fact that a journalist hadn’t covered her story.  It’s a sentiment we’ve heard before. And I wish we had a better answer, but many stories of patient harm exist, and journalists simply can’t get to every one.  

However, as community manager, I can tell you that if you or a loved one has suffered harm, there are some steps you can take to share the story.

1.     Fill out our patient harm questionnaire. We use this for a broad picture of the issues, and may contact you for more information. (And based on feedback from the summit, we’ve tweaked the introduction to reflect the fact that you do not, in fact, need all of your documents to fill out the form.)

 

2.     Report the incident to the appropriate agency. We’ve compiled a list here.

 

3.     Tell your story on your own. Many easy-to-use, free platforms make it possible for you to post it online and share it with your networks. Below are a few examples. ProPublica hasn’t verified these stories, but they should give you an idea of what’s possible on your own.

  •  Several people have written their stories as posts in our Patient Harm Facebook group. And we read nearly everything posted there.
  • Create your story on Cowbird. This website lets you upload photos, audio and text to tell your story in a visually appealing way. You can also dedicate a story to an individual. I haven’t yet found any that specifically pertain to patient harm, but several have shared their stories under the “Hospital” category.
  • Many make their own websites or blogs, with a tool like Blogger, Tumblr and About.Me. For an example, see the Gort family. Two of their three daughters allegedly suffered medical errors in the same year, at the same children’s hospital. They chronicled their side of story in real time, and later, independent filmmaker Steve Tatzmann also made a short documentary about their story.  
  • Some people are also sharing their stories on YouTube. You can browse the “Medical Errors” topic for some examples.
  • Share your story with Consumers Union. Over several years, they've already collected thousands of stories. 

 

Our previous reporting on dialysis also got some praise at the summit, so we want to remind everyone we’re planning to update our  Dialysis Facility Tracker, a tool that lets you find the best dialysis centers near you, with recent data.