Author Archives: pfanderson

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.

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.

TEDMED on Patient Engagement – Hashtags of the Week (HOTW): (Week of September 15, 2014)

Screen Shot 2014-09-10 at 6.24.43 PM√
TEDMED 2014: Image from presentation, believed to be by Marc Koska.

At Stanford’s Medicine X event, the patient is front and center to the whole experience, an essential partner in helping to innovate in healthcare, as well as in helping to plan the event. In the week following #MedX the Healthcare Leader (#hcldr) Twitter chat also discussed the why and how of engaging patients in healthcare professional conferences with the goal of encouraging fast, relevant innovation in healthcare. Imagine my delight when the same theme cropped up AGAIN at TEDMED. The image opening this blogpost was captured from one of the presentations at TEDMED, I think one by Marc Koska, in which the discussion was about identifying the most important stakeholders for improving (revolutionizing) healthcare, and what relationships are needed among those stakeholder communities. As he kept talking, more and more lines were drawn, connecting the various groups. Ultimately, they are all connected to each other. Thinking of patients, this means patients should be actively engaged in conversations with health care providers, insurance, policy makers, device designers and manufacturers, drug companies, researchers, and so forth.

Part of the point of engaging with actual patients is that you don’t always know what they’ll say. You want to help, and you think you know what will help them, but you can’t truly KNOW until you talk with a lot of patients, to learn about different types of experiences, needs, and perspectives. Sometimes what they say can be quite surprising. Kitra Cahana was a presenter at TEDMED who described her father, Ronnie, spelling out messages with eyeblinks after a major stroke resulting in “locked in syndrome.” What was he saying? Some of the most intelligent, coherent, poetic messages describing the patient experience that I have ever encountered.

Screen Shot 2014-09-10 at 5.57.36 PM√
Screen Shot 2014-09-10 at 6.02.37 PM√

So TEDMED asked. They’ve define patient engagement as one of the Great Challenges facing healthcare. “What is the role of the patient? How do we empower patients to make healthier decisions? What is the patient’s role from his or her perspective? What is the role of health people (non-patients) in healthcare?” Here is part of what they asked, and part of what they heard.

@JoelHigh “We have to go deeper with patient to understand their values”

@roseperson “Empower patients to make healthy decisions by advocating for policies and incentives to make healthy=easy”

@LALupusLady “Manage my chronic condition with a TEAM of HCPs, also strive to control flares”


First posted to THL blog: http://thlibrary.wordpress.com/2014/09/16/tedmed-on-patient-engagement-hashtags-of-the-week-hotw-week-of-september-15-2014/

Medicine X – Hashtags of the Week (HOTW): (Week of September 8, 2014)

Stanford Medicine X

Medicine X started late last Thursday, and then ran for the next three days with a SOLIDLY packed program. I tried to follow as much as I could, in between kids, dogs, appliance deliveries, etc. I’m tired. But it was really awesome. There were a bunch of hashtags, but the core one was #MedX. There were, of course, presenters and participants from here, including Joyce Lee and Brian Stork, both of whom gave Grand Rounds on the University of Michigan campus last year. The livestream included what was on the main stage, so I wasn’t able to see their presentations, but there will be video in Youtube eventually. For today, I want to share some highlights from the almost 50,000 tweets over the four days. Among the highlights you’ll see a lot about the future of medical education, patient engagement, and stories in healthcare. To paraphrase the famous Susannah Fox, if these are headlines from the future of healthcare, what are they saying?


First posted at THL Blog: http://thlibrary.wordpress.com/2014/09/08/medicine-x-hashtags-of-the-week-hotw-week-of-september-8-2014/

MedX, and TEDMED, and the Inauguration, Oh, MY!!

MedX, UM Inaugural Symposia, TEDMED

Last week I was privileged to listen in on a press conference for the upcoming TEDMED. Tomorrow is the Symposia for the Inauguration of UM’s new President, Mark S. Schlissel, with Harold Varmus as a guest speaker! Later tomorrow and this weekend, I’ll be watching Stanford’s Medicine X (#MedX) through their Global Access program. Next week the UM Medical School will be hosting a viewing of TEDMED. I feel like I’m swimming in an intellectual biomedical broth!


President Schlissel Inauguration Symposia with Harold Varmus

Inaugural Symposia: Sustaining the Biomedical Research Enterprise and Privacy and Identity in a Hyperconnected Society

HASHTAG: #UMPres14
LIVESTREAM (1): http://umich.edu/watch/
LIVESTREAM (2): http://www.mgoblue.com/collegesportslive/?media=461850

The Inaugural Symposia for President Schissel’s investiture (8:30am ET to 12:00 noon ET) are composed of two very interesting topics and even more interesting collections of speakers. The first part, “Sustaining the Biomedical Research Enterprise,” is the section including the famous Harold Varmus, but also five other notable researchers from on campus, experts in chemistry, genetics/genomics, neuroscience, statistics, and biomedical imaging. (I’m excited that three of the five have expertise related to genomics!)

The focus of the first symposia centers around a recent article from Varmus and colleagues entitled, “Rescuing US biomedical research from its systemic flaws.

The provocative abstract states:

“The long-held but erroneous assumption of never-ending rapid growth in biomedical science has created an unsustainable hypercompetitive system that is discouraging even the most outstanding prospective students from entering our profession—and making it difficult for seasoned investigators to produce their best work. This is a recipe for long-term decline, and the problems cannot be solved with simplistic approaches. Instead, it is time to confront the dangers at hand and rethink some fundamental features of the US biomedical research ecosystem.”

Those three ‘simple’ sentences imply an enormity of challenges which impact both locally and globally. I guarantee it will be fascinating to hear this panel discuss these and brainstorm ways in which the University of Michigan might work towards addressing them here.


Stanford Medicine X

Stanford Medicine X 2014

HASHTAG: #MedX
LIVESTREAM: Available with pre-registration through the MedX Global Access program: http://medicinex.stanford.edu/2014-global-access-program/.

Lucky for me, the Stanford Medicine X event is on the other coast, so our local event will be almost completed when they begin livestreaming at 8AM PT (11AM ET). However, Medicine X conference lasts a solid three days, and includes topics from self-tracking to self-awareness, from entrepreneurship to partnership in design, from compassion to PCORI, from pain to clinical trials to games. It’s intense. A lot of my friends will be there, too many to name, but they include doctors, patients, geeks, and more. MedX is a powerful diverse community, and this is an exciting event.

Schedule: http://medicinex.stanford.edu/2014-schedule/


TEDMED 2014

TEDMED 2014

HASHTAGS: #TEDMED; #TEDMEDlive; #TEDMEDhive; #GreatChallenges.
LIVESTREAMING OPTIONS: http://www.tedmed.com/event/tedmedlive

TEDMED is a little different from the other two events in that it isn’t sponsored through higher education and the livestream isn’t usually free. For folk here in Ann Arbor, there is a way to watch it on campus. What you’ll see if you come includes very little that is expected. Even when someone has a job description that might sound like regular healthcare folk, what they are talking about will probably be a surprise. Beyond the idea of doctor, patient, nurse or neuroscientist, you will also hear comedians, musicians, athletes, bioethicists, military, philosophers, inventors, and more. But what else would you expect, when the theme of the event is “Unlocking Imagination”?

The TEDMED event is a little more complicated than in prior years because they are having presenters and events on both coasts — in Washington DC and in San Francisco. Some parts will overlap. Other parts won’t. You can check out the schedules for both coasts here.

Washington DC Stage Schedule (pdf)

San Francisco CA Stage Schedule (pdf)

To watch locally, details are given below.

Watch the Live Stream of TEDMED Conference, September 10-12

The Medical School will host a live stream from the TEDMED conference, which takes place September 10-12 in Washington DC and San Francisco. The focus of this year’s program is “Unlocking Imagination in Service of Health and Medicine.” Presenters include some of the most respected and undiscovered names in science, journalism, education, business, and technology. Click here to see the conference schedule. Viewing times and locations for watching the live streams are:

Wednesday, September 10: 8am-5pm: University Hospital South (Old Mott) 8th floor lounge
Thursday, September 11: 8am-12pm, 1pm-5pm: University Hospital South (Old Mott) 8th floor lounge
Friday, September 12: 8am-11:30am: University Hospital South (Old Mott) 8409 Conference Room
Friday, September 12: 11:30am-5pm: University Hospital South (Old Mott) 8419 IDTT Collaboration Space

Conferences on Twitter (AIDS & Cardiology) – Hashtags of the Week (HOTW): (Week of September 1, 2014)

Mid-Event Twitter Metrics for #ESCongress via Symplur
#ESCongress Twitter Metrics: http://www.symplur.com/healthcare-hashtags/esccongress/

Even people who don’t use Twitter are usually aware of the Twitter backchannel at conferences. There are some big ones going on right now.

AMEE 2014 (medical education): #AMEE2014
APAC Forum (“social media as a transformative force in healthcare”): #SoMeTransform and #APACForum
The BMJ Awards: #thebmjawards
ESC Congress 2014 (European Society of Cardiology): #esccongress

There are almost always various healthcare conferences going on. Here is a small selection of healthcare conference hashtags coming up later this week.

Breast Cancer Symposium: #BCS14
Kaiser Permanente Irving Rasgon Family Medicine Symposium, 40th Annual: #KPFamMed
Rural and Remote Health Scientific Symposium, 4th: #ruralhealthsymp
Society for Imaging Informatics in Medicine (SIIM) Regional Meeting: #SIIMboston
Stanford Medicine X 2014: #MedX
Trauma Education: The Next Generation 2014: #TETNG14
World Congress on Cancers of the Skin: #WCCS2014

How do I find these? Partly from my Twitter stream, partly from searching, but mostly from the Symplur list.

Symplur: Healthcare Hashtag Project: Conferences: http://www.symplur.com/healthcare-hashtags/conferences/

What was probably the largest Twitter presence from a healthcare conference happened earlier this summer with the International AIDS Conference, #AIDS2014, which had almost 15,000 tweets the first day. Part of what caused the spike was the loss of so many AIDS researchers in the MH17 crash in the Ukraine as presenters tried to get to the conference. This isn’t just an idea I had, but something you can see in the tweets and their analysis. Symplur doesn’t simply serve as a tool to discover hashtags and tweets, but also provides metrics and comparisons. Here are some Twitter metrics from the AIDS2014 hashtag (you may need to click through to see the images).

Something that also happens on Twitter with conference hashtags are people planning to attend events, making arrangements to meet, promoting a presentation they hope will attract an audience, building up awareness and marketing. Sometimes you also get comments like this one about what NOT to do for using social media or the web for your event.

Oops. A BIG oops! Symplur has guidelines for Twitter hashtags that would make life difficult if the Big Data Science in Medicine folk try to use the URL as their hashtag, since it would probably not be allowed to be registered for archiving. It would probably also attract a lot of “unintended” and off-topic tweets.

The big healthcare conference on Twitter right now is the European Society of Cardiology, still going on today, with over 21,000 tweets and over 93 million impressions (so far). Here are just a few highlights from ESCCongress.


First posted at THL Blog: http://thlibrary.wordpress.com/2014/09/02/conferences-on-twitter-aids-cardiology-hashtags-of-the-week-hotw-week-of-september-1-2014/

Infographic of the Week: HHS Infographics Collection!

HHS Infographics on Flickr
Flickr: Group: HHS Infographics: https://www.flickr.com/groups/hhsinfographics/

I just discovered a Flickr group that collects infographics from the US Department of Health and Human Services. WOW. Talk about a great resource! There are many infographics in the collection, and also marketing images for specific health challenges or initiatives.

HHS Infographics on Flickr

This isn’t all they have, though! You can many of these in sets or albums from the HHSgov Flickr Stream.

Flickr: HHS: Sets: Health Care Infographics: https://www.flickr.com/photos/hhsgov/sets/72157633968047018/

Flickr: HHS: Sets: HHS Infographics: https://www.flickr.com/photos/hhsgov/sets/72157632180365890/

Now, it is completely wonderful to have a one stop shop to go hunt health infographics from a reliable source and of known high quality. Extremely useful! But this is even better than that. Because these are in a Flickr Group, there are many other things you can do.

If you have a Flickr account, you can request to join to track the images that appear in the group, or you can use the RSS feed from the group in your feed reader.

You could set up a computer display in a public area, and start the “slideshow” view from the group as a way to engage the public around quality health information.

Because these are licensed as “United States government work,” you can download these, re-use them, post them yourself, put them on your website, edit and modify them. As they say:

Anyone may, without restriction under U.S. copyright laws:
* reproduce the work in print or digital form;
* create derivative works;
* perform the work publicly;
* display the work;
* distribute copies or digitally transfer the work to the public by sale or other transfer of ownership, or by rental, lease, or lending.

Niiiiiice.

However, because these are in Flickr, the absolute easiest way to share them is to just embed them on your webpage or site, or share the link wherever you wish. Here’s an example.

Recently, I’ve been seeing many conversations on social media, on Twitter, Facebook, and in blogs, about issues with patients access to their electronic health record and problems with the accuracy of the information in their record. Right now, this is again a timely issue. The HHS has a series of four short infographics on exactly this topic. I can choose one or any or all and, with a Flickr account, grab the embed code to put them in this blogpost without having to download or upload or rename or identify or worry about the accessibility of the code. Here’s what it looks like.

Know Your HIPAA Rights #1Know Your HIPAA Rights #2
Know Your HIPAA Rights #3Know Your HIPAA Rights #4

If someone clicks on any of the four images above, it will take them to the original image, in a larger size. The source is right there, and I didn’t have to do the work. So very helpful. I love this resource. So glad I found them!

Concerns & Clarification on the FDA Guidelines for Social Media (#FDAsm)

FDASM: FDA on Social Media

Last Tuesday afternoon, there was a Twitter chat on the new FDA guidance on social media that was hosted by the medical librarians group (#MedLibs), but which engaged an audience that also included healthcare professionals, lawyers, and communication specialists. It was a very interesting chat that touched on concerns, assumptions, misunderstandings, clarifications, and resources. You will find many of these excerpted from the full conversation and highlighted below. First, though, here is a high level summary.

Concerns included the potentail for a “chilling effect” that might impact on education, innovation, professional and patient public communications, research and clinical trial recruitment; responsibility (who is responsible for what/when/where/how with respect to health social media communications); effectiveness of social media controls for their intended purposes and the costs/benefit assessments; the role of identity, honesty, and transparency in health social media communication; and whether the guidelines will promote inclusion or foster exclusion of relevant voices in useful conversations.

Clarifications sought: plain language summaries of the guidelines; description of the potential and expected impacts on various communities of practice, including health education and patients; the relationship and responsibilities of employers and employees in their social media identity management and communications; and the issue off-label use conversations outside of pharma entities.

Clarifications which appeared during the chat (but which are note from the FDA, and therefore not the authoritative word with respect to these issues): who is covered by the guidance; community and individual efforts to create plain language distillations of the guidance; context; and a reminder that freedom of speech does not equal freedom of consequences for that speech.

For Medical Librarians: role for medical librarians in supporting and demonstrating best practices in Twitter chats; role for medical librarians in supporting education around the FDA’s guidance for their institutions as well as for patients and the public; and a caution about medical librarians being potentially excluded from social media as part institutional image controls as well as potentially as an impact of the guidance.

Takeaways: how to format an FDA-style tweet; avoid creating branded accounts for free conversation; encourage individuals to create personal accounts that are not branded and are distinct from the brand; consider correction of health misinformation as an opportunity; avoid perception of “practicing medicine” on social media, but discussions are alright; consider commenting on the FDA draft guidelines before September 17.

In addition, the conversation included discussion of best practices for identifying tweets as representing personal opinion, as well as a rich collection of resources.

CONCERNS

CLARIFICATION NEEDED

CLARIFICATION RECEIVED

FOR MEDICAL LIBRARIANS

TAKEAWAYS

FURTHER QUESTIONS

RESOURCES