Case Study: I F***ing Love Science & Rare Diseases


"Did you know 1 in 10 people have a rare disease?"

“Did you know 1 in 10 people have a rare disease?”
http://globalgenes.org/rare-diseases-facts-statistics/

If IFLScience didn’t know before that 1 in 10 people have a rare disease, they do now! Last Saturday, IFLScience put up a post on rare diseases. In this post, they chose 10 conditions to highlight, evidently because the popular names for the conditions were reminiscent of Halloween and monsters.

10 of the Strangest Known Medical Conditions
Here is the link:
http://www.iflscience.com/health-and-medicine/10-strangest-known-medical-conditions

I’m no fan of zombies or gore, and had my own issues with the images selected for this post, but am trying to see both sides. For the record, IFLScience has done a lot of good work engaging and educating the public around science, fostering science literacy and awareness. They are very popular, and (overall) popular science education is a good thing for science. Those of us working in science and in STEM/STEAM education and outreach want people to be willing to learn about science.

This particular article, however, was not received well by many in the rare disease community. Because the article was perceived as misrepresenting not only one rare disease, but TEN, many people in the community banded together, even though these were not conditions that they necessarily had themselves. The rare disease community objected to several points, and have been actively using social media to spread the word in attempts to get IFLScience to take down or withdraw the post.

In the meantime, the rare disease community is also finding themselves in the awkward position of attempting to manage the largely offensive comment stream, educate, correct, and respond, but are having to do this as interested outsiders, not partners, and without the support or cooperation of IFLScience.

The primary concerns I’ve heard from the rare disease community are these.

1) The post was written in a way that provoked unkind comments and trolls, setting up persons with rare diseases as an object of ridicule.

2) The unkind comments (on the post, Facebook, and Twitter) have failed to elicit any response, clarification, management, or revision on the part of IFLScience. There is no acknowledgment of any error of content or presentation. Similarly, there is no response to the rare disease community’s concerns.

3) The images were selected as “clickbait.” The images are themselves offensive, or provoke offensive comments. Evidently, IFLScience has a prior history of not providing attribution of images and not getting a license to use images, although those don’t *appear* to be issues in this particular post. I take it back. They did use several images that specified no commercial use; they use Getty Images without a link back to the source; and they used “share alike” images which is even more strict than a non-commercial use requirement.

4) The content provided contains inaccuracies, which were not being corrected. There are no sources given for where they got the content which is being identified as inaccurate by patients with the conditions mentioned.

Evidently, the issues of non-response, questionable images, and questionable content are simply part of the IFLScience ‘charm’, or modus operandi, as these have been reported several times before.

“After finding one of my photographs posted to IFLS yesterday without permission, I surveyed the most recent 100 images in the IFLS stream and tallied the percentage of images that were credited (26%), uncredited but with the linked site giving a credit (15% – hint: still not legal), and not credited at all (59%). Most of the material on I F*cking Love Science is pirated.” Facebook’s “I F*cking Love Science” does not f*cking love artists
http://blogs.scientificamerican.com/compound-eye/2013/04/23/facebooks-i-fcking-love-science-does-not-fcking-love-artists/

“Uncharacteristically, Andrew was silent on social media. Her lack of response suggested less media savvy than I’d begun to give her credit for; it smacked of a hobbyist, someone who doesn’t hold herself accountable.” Do you know Elise Andrew? http://www.cjr.org/cover_story/elise_andrew.php?page=all

“A string of posts this summer suggested that IFLS endangers facts on a fairly regular basis; these included a photoshopped, uncredited image of a snake (“…this gorgeous creature is found in California” – except it doesn’t look a thing like the over-saturated, edited version the site posted), a re-posted cracked.com photo suggesting spiders had taken over trees in Japan (and showing what was actually a landscape in Iran), an astronomy news story that misstated the entire premise of the discovery in the first sentence and went on to bungle facts throughout.” Guest Post: Elise Andrew, science popularizer with a spotty attribution record, gets a pass from CJR. https://ksj.mit.edu/tracker/2014/09/elise-andrew-science-popularizer-with-a-spotty-attribution-record-gets-a-pass-from-cjr/

Because I’m such a fan of all-things-science, I really did not want to believe anything bad about IFLScience. From what I’ve been reading it sounds like most people, even those who complain about some of their less desirable qualities, mostly love the idea of what they do and just want IFLS to commit to doing it responsibly and ethically. Most of the posts excerpted above at some point say something along those lines.

In the conversation with rare disease advocates on Twitter, I was trying to defend IFLScience, as a source that successfully promotes science literacy in the public, presumably for the right reasons. I argued that the piece was intended as educational, not to be hurtful. That you can’t always control who posts comments. I argued for the importance of an open dialog rather than censorship and removing content. This became much harder to do when the conversation went on, and on, and IFLScience did not respond to either the concerns, complaints, or kudos. They didn’t respond to comments on the blogpost. They didn’t respond to posts on their Facebook page. They didn’t respond to any of the myriad comments on Twitter.

Here is what I posted on Facebook:

Concerned about the lack of response from “I f***ing love science” to reactions from the ‪#‎raredisease‬ patient communities to their blogpost by Lisa Winter. Extensive commenting on the blogpost and a rich discussion on Twitter. Hard to defend them as good folk with a heart in the right place when they don’t stand up for themselves.

It was about that point in time when I found a way to track down the author of the piece on Twitter, and made contact.

UPDATE September 20, 2014: The author’s comment has been removed from the end of the blogpost and is no longer there.

I don’t know if these will content the persons who were concerned, but I hope it shows a good faith attempt in that direction, and keeps the door open for future dialog.


LESSONS LEARNED?

Those changes and the response from the author are a good start, and certainly better than no response. There are, however, obvious lessons to learn.

1) Contact information easily findable.

By the time I was engaged in the conversation, there were a LOT of comments on the original post, and the comment thread along meant scrolling, and scrolling, and scrolling. There evidently IS a “Contact” link in a small font at the very bottom of the page. Sounds like they are working on fixing this problem.

2) Respond in a timely manner.

This is one of the easiest & most common ways to avoid getting into news media trouble for your social media buzz. I have a Pinterest board where I collect educational stories and best practices for social media troubleshooting, and this shows up a lot there. Consider it fundamental.

3) Social media policy posted where it can be found.

When we found that IFLScience wasn’t responding to our hails, I went hunting for a social media policy on their web site, in case they actually say, “We don’t moderate comments, and don’t reply to comments, and don’t reply on Facebook or Twitter, but here, this is what we do.” Actually, I was hoping that they would have some sort of guidelines for participation in the community, something along the lines of “Yeah, we’re all wild and crazy characters, but let’s play nice anyway, eh, folk?” I couldn’t find one. There may be a social media policy that I couldn’t find, and I hope so, but perhaps make it easier to find? Certainly, for a company that has based their entire operations on social media, they need a proper social media policy up front and center more than most traditional companies.

4) Pictures: Licensed, & Attributed. Information: Researched & Cited.

I know, I know. This has come up a LOT. They are young, they are new, they are learning. Please, IFLScience, go visit your friendly neighborhood university library and talk with one of the librarians who specializes in intellectual property of images. Most universities have someone who knows about this. Aside from the concern of whether or not the images were appropriate or inflammatory, I should not find as many images problems as I did in this post. IFLS is a commercial entity. They sell stuff and make money from their web site. They have advertising / sponsored links. They are not authorized to use images that are licensed non-commercial (as was the case for 4 of the 10 images in this post) without negotiating licensing before using the image. I know you’re trying to fix this ongoing problem, but you either need a lawyer on staff to review every single post before it goes live, or you need to learn your stuff, and make sure all staff who post images also know the rules.

And citations? Many of the complaints about the quality of the content could have been addressed by having credits for your information sources. “Oh, you said this wrong thing because you used this source that is famous but out of date.” People may cut you some slack for those types of errors if they can see how they happened. Also, it provides a service for your readers, if they want to go learn more about what you just said. Win-win! Protects you, and serves the best interests of your audience.

5) Style guide! Or Checklist!

It’s obvious that IFLScience has a publication calendar, and some rudiments of a style guide. I can’t be certain, but would love to see them take a leadership role in transparency about how they create and share science information, setting an example for others. I was hoping to see a checklist at least, if there wasn’t a style guide.

Since I couldn’t find one on the IFLScience site, I started looking for other science blogging guides. I found some excellent ones, but will make that a separate post. For today, and here, suffice it to say that having one is another strategy that might help protect IFLS from complaints as well as helping to ensure quality control for their content.

6) Say Sorry

If you make a mistake, say you’re sorry, and fix it. Science knowns all about retractions and corrections. Don’t be afraid of them in science blogging. It’s cool, and actually makes you look more cool. Not being afraid to say you made a mistake makes you look more competent and confident, and can inspire confidence in you. Another win-win!

FINAL THOUGHTS

There was one checklist I found that I thought rather relevant to this particular situation: The Alternative-Science Respectability Checklist. Why? Because a big part of what caused the problem this past week was a clash of cultures, and that is what this checklist addresses.

Discovery: Cosmic Variance (Sean Carroll, June 19, 2007): The Alternative-Science Respectability Checklist http://blogs.discovermagazine.com/cosmicvariance/2007/06/19/the-alternative-science-respectability-checklist/

IFLScience is trying to be edgy and catchy and engaging, fun and funky and funny all at the same time. They are focused on science, but break boundaries all the time there, and have made a name for themselves (literally) based on breaking some of the standard assumptions and rules for science communication.

In this post they crossed the boundary over into healthcare, where the culture is a little different. It might still be fun, funky, catchy, edgy, etc., but within an overarching framework of CARING. Compassion is at the heart of most of healthcare communication, and that is what was missing (albeit inadvertently) from this post.

What the The Alternative-Science Respectability Checklist recommends is taking the time to address issues of different cultures when you try to communicate across these invisible boundaries. Here’s how Sean Carroll said it.

1. Acquire basic competency in whatever field of science your discovery belongs to.
2. Understand, and make a good-faith effort to confront, the fundamental objections to your claims within established science.
3. Present your discovery in a way that is complete, transparent, and unambiguous.

To paraphrase:

1) LISTEN. Get to know something about the audience for the content you are communicating. Get to know their culture, standards, expectations. Expect to make mistakes, and expect to apologize. Be good-humored about it.

2) TRY. Understand, and make a good-faith effort to be authentic and respectful (even if you, like IFLScience, are famed for your snarkiness — you can be snarky without being mean, even accidentally). If you don’t have time to do this well and thoroughly, be up front about that in the piece, and ask for forgiveness in advance. Yes, you can be entertaining about it, if you are creative enough. You’ll figure it out.

3) SHARE. Present your thoughts & information in a way that is complete, transparent, and unambiguous. Be honest. Be inclusive. Be open. Let them know about you, and that you want to know about them.

2 responses to “Case Study: I F***ing Love Science & Rare Diseases

  1. Pingback: Risk Science Center So you want to write better science blog posts ... - Risk Science Center

  2. Pingback: Strategies for Better Science Blogging: Part One, Best Practices & Guidelines | Emerging Technologies Librarian

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