What a little Twitter chat can do to stop #stemcellhype

Michael Joyce produces multimedia at HealthNewsReview.org and tweets as @mlmjoyce

What fuels hype?

A stem cell clinic advertisement from the Seattle Times shared during the Tweet chat

I’ve been thinking about this quite a bit since we hosted a Twitter chat last week addressing #stemcellhype (summarized HERE on Storify).

We wanted to explore the boom in unregulated stem cell clinics offering unproven therapies across the country. These clinics are being marketed in an increasingly aggressive and mainstream fashion. More people are turning to them. More are being hurt. Yet their growth continues unchecked.

So our first response was to produce this podcast. While researching and interviewing for the podcast it quickly became apparent that this hype is not benign. Also, many of the voices warning others of this aren’t being heard nearly enough. Hence, the Twitter chat.

What did we learn?

First, although direct-to-consumer marketing may shout louder and further than academics, many concerned scientists and researchers are generating a substantial and meaningful body of work that clearly documents the ethical, clinical, legal, and scientific problems with these dubious therapies. Many of these academics participated in the chat and shared links to the latest research. The sheer volume and quality of the resources shared during the chat was impressive.

Emma Tumilty PhD — a bioethicist at the Institute for Translational Sciences in Galveston, Texas — joined the discussion and found it useful for three reasons:

“First, these chats allow conversations to happen that would normally only happen at large conferences or in larger cities. So I find tweet chats an interesting opportunity to meet ‘Twitter-people’ with similar interests. Second — in this tweet chat in particular — there were a lot of materials and resources shared that I could collect in one go to further my knowledge and also reference in the future. Finally, just the opportunity to see experts interacting, and responding directly to each other, is great.”

Emma Tumilty PhD

It’s a great opportunity for journalists as well. Short of attending a major conference — as Tumilty points out — a Twitter chat like this offers one-stop shopping for writers looking for background materials, potential interview sources, and new story ideas.

For example, this chat focused on four major topics. Each one of these topics could, on its own, generate enough material for an in-depth piece of investigative journalism:

 

  • What are some examples of stem cell hype in news stories, PR, and advertising ?
  • What are the potential harms of such hype and why does it matter to the public?
  • How can consumers tell the difference between legitimate and non-legitimate stem cell therapies?
  • How do we stop the hype? Turn to the FDA? FTC? State medical boards? Journalism?

Not only are these topics under-reported, but they would make for compelling stories.

Finally, when our Twitter chat was over, I found myself wondering if that single hour of discussion actually made a difference. That’s a common anxiety you’ll hear from journalists. Did my article or broadcast reach anyone? The simple answer is we never know. Comments, clicks, and analytics are one thing. Impact quite another. But what we often forget is the long view. The very idea that when we raise a topic, at a certain point in time, and hear what people are saying (or, what they’re not saying), it has tremendous value.

It’s on the record. A snapshot of an evolving issue. It’s archival.

So back to my original question: What fuels hype? I don’t know. But I think it’s a sort of momentum of opinion, fueled by exaggeration, that promises to soothe a larger need. In the case of stem cells, that exaggeration seems to reflect all that is dysfunctional about direct-to-consumer marketing. And the need? Maybe that part of all of us that needs answers, fixes, or to do something. Even if that something may not be the right thing.

HERE IS THE STORIFY SYNOPSIS OF OUR #STEMCELLHYPE CHAT FROM AUGUST 9, 2017

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