HIPAA is not a reason to not share authentic stories

Estimated read time: 4 minutes

HIPAA, the Health Insurance Portability and Accountability Act, is sometimes cited to be a hurdle in healthcare to share authentic stories that involve people (aka patients). Since the best stories involve people, chances are that some of the best stories worth sharing by healthcare organizations do indeed involve patients.

Related: Finding good stories through story shopping

And HIPAA does offer privacy protection for confidential health information. That of course is a good law. I certainly wouldn’t want my own personal information shared if I don’t want it released. Ultimately, we own our stories and what pieces of them are released. That’s especially true when it comes to health information.

Clearly, I – as the main character of my own story – can release and share whatever myself I want to share. That could include my blog here, my fitness blog where I share stories including that I saw a plastic surgeon after losing weight, and on other social media channels. You’ve probably seen people post “medical condition” photos before and asking their networks for opinions on the picture. Others have shown off injuries suffered. You may have seen other examples of medical information posted on social media by your own friends. The options and choices people make are somewhat endless. Either way, it’s personal.

Authentic patient stories can be shared by anyone – the patients themselves or the healthcare systems who provided the care to them. Of course, when healthcare organizations want to share patients’ authentic stories they need to get their consent.

More and more organizations are sharing patient stories and that’s great when done in an authentic way, To make them the most effective and meaningful to all involved – including the patients and those consuming the story (aka target audience or interested community) here are a few things to consider:

  • Why is this story worth sharing?

  • Is it unique?
  • Is it something new?
    Is there additional context – like a trend that’s worth sharing?
  • Does the patient want to share it?
  • Is the timing right? (It once took me eight years to publish a very personal story, for example.)

Of course, these items are worth considering for just about any story in many industries – not just healthcare.

It’s also good to be sure that you really want to share a story before asking somebody to participate in a lengthyish interview to produce such story. But let’s not get hung up in analysis paralysis either.

For the most part, in my career as a storyteller across several industries, most people do indeed want to share their stories – especially if they were happy with an organization’s help and think that them sharing their story will help that organization.

Once those items have been quickly thought through, the right person in an organization can ask the patient if they would be OK with sharing their story. Once they get the verbal OK, ask them to sign the HIPAA release form so you can actually share their story. I’m not a lawyer and won’t give advice on who should make the contact or what the form should say exactly (ask the lawyers, please – also on the exact process), but release forms like this are not that unique to healthcare only. I always recommend that organizations (and this has included nonprofits and others as well) have everyone part of their published stories sign a release form. It’s really not that unusual to ask people to sign a form in any industry.

Even though I’ve asked people to sign forms across several industries, I always give them the opportunity to fact check and edit their stories. It’s important that stories are accurate and that people are comfortable with what’s being released. We wouldn’t want them to later tell others offline that an organization was hard to work with in this process. We want them to publicly support the story. Oftentimes, they share them across their own networks. Plus, I usually recommend that people’s stories are shared in their voice – even if somebody else writes them. Buy-in – and not just in the form of a signed form – is important.


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So in a nutshell, HIPAA and other privacy forms aren’t a barrier to authentic storytelling content marketing. They are simply another step that needs to be incorporated into the process. It’s totally worth it, because sharing stories of people who were impacted by an organization, a service or even a product (outside of healthcare) makes our authentic stories so much better.


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