Strategies for Better Science Blogging: Part One, Best Practices & Guidelines

Scientific Communication Word Cloud (I Ching)

Last week, there was a kerfuffle around an IFLScience blogpost about rare diseases, and the responses from the rare disease community. In that post, I mentioned that I’d been looking for guidelines, checklist, style guides, and other similar types of tools for effective and appropriate science blogging, but that I wanted to make it a separate post. This is that promised post.

Before I get in too deep, here is a search strategy I used, and which you can use to poke around more in this, if you wish.

(“science blogging” OR “blogging about science”) (“style guide” OR checklist OR guidelines OR “best practices” OR rules)

(1)

Let’s start with the best introduction and brief overview I’ve found, written by Andrew Maynard. In these two posts, Andrew distills the most important lessons learned from years of working with graduate students and collaborating with other bloggers to give feedback on his “Mind the Science Gap” course and blog.

Anyone can blog about science. But it takes effort and diligence to blog well.

When I was teaching the Mind The Science Gap blogging course at the University of Michigan, it became clear early on that, no matter how enthusiastic or knowledgeable you are, there are some basic guidelines that can help make the difference between a great piece and a train wreck (thankfully we never had any of the latter). Over time, these developed into the Mind The Science Gap Good Practice Guide for writing Science Blog Posts.

So you want to write better science blog posts … http://www.riskscience.umich.edu/want-write-better-science-blog-posts/

Good Practice Guide for Writing Science Blog Posts http://www.mindthesciencegap.org/style-guide/good-practice-guide-for-writing-science-blog-posts/

Here is a distillation of his main points in my own words.

PREPARING:
Read broadly.
Read quality.
Skim beyond the basics.

GENERAL:
Don’t imply expertise you don’t have.
Don’t give advice.
If you give opinions, SAY THEY ARE OPINION.

WRITING:
Stick to the facts.
Include multiple voices & sources.
Report on controversies fairly.
CITE THEM.
Be generous with credit to others.

PICTURES:
Choose images to support the story.
Get permission.
Cite your images, also.

LAST STEPS:
Re-read your writing.
Find a proofreader.
Ask yourself if what you said was fair, accurate, scientifically defensible, and honest (FASH).

AFTER:
If you made a mistake, own it.
If you correct a mistake, say so in the post.
Say thanks to whoever raises useful questions.

(2)

Including many of the above, but enriching them with many practical tips from a rich set of interviews with successful science bloggers, this next one is also fabulous. I’d love to see “Blogging Tips” made into an infographic / checklist where I could post it for easy access.

Blogging Tips for Science Bloggers, From Science Bloggers http://www.scilogs.com/from_the_lab_bench/blogging-tips-for-science-bloggers-from-science-bloggers/

(3)

There are a lot of people concerned with the quality of science blogs right now. Andrew Maynard (1) has been teaching classes on science blogging. SciLogs (2) had that series of interviews with best practices. And at Science Online this year, there was a workshop devoted to the topic of standards in science blogging. They used the hashtag #SCIOstandards to extend the conversation through Twitter. I’ve picked just a couple example tweets with good points, but really, it is worth going to the #SCIO Standards Storify and reading through the whole thing!

There is a lot more! Here is one of several Tweets connecting to the Storify. There are also many spin-off conversations without the hashtag. You can see these by browsing from the individual tweets, and reading the replies to them.

For more background about this workshop, check out this link.

Background Reading in Science Blogging – #scioStandards http://www.scilogs.com/next_regeneration/background-reading-in-science-blogging-sciostandards/

(4)

Given that what started all this were questions of science blogging ethics and how blogging can work (or not) within a community, it seemed appropriate to draw attention to the community guidelines and harassment policy from one of the leading science blogging communities and forums, Science Online. It might seem a bit strange to include the concept of harassment in the context of science blogs best practices, but just think for a moment. What is your goal? If it is to inflame controversy and grab attention, then perhaps harassing people is one way to succeed in that goal. If your goal is, however, to accurately communicate science information in an engaging way, then you want to reach a broad audience and you want them to believe you. Making enemies may not be the best path towards that goal. In the case of last week’s IFLScience upset, it is unfortunate that there is a significant audience that felt persecuted and harassed. I don’t believe that was intentional, but it wouldn’t hurt for IFLscience (and the rest of us) to stop and consider whether or not our posts could be interpreted as willfully contentious or harassing as part of those final steps in our checklist before clicking “post.”

Science Online Community Guidelines: http://scienceonline.com/community-guidelines/

Mission:
“ScienceOnline cultivates science conversations both online and face-to-face. At our face-to-face events, we provide an atmosphere that encourages creativity, collaborations, connections, and fun. Through social media, we listen, support, share, recommend, and reach out. Through all of this, we celebrate science.”

Values:
“Respect. Generosity. Acceptance. Open-mindedness. Compassion. Kindness. Curiosity. Enthusiasm. Humor, Wit. Inclusivity. Collaboration. Open-mindedness, Humility. Support. Sharing. Cooperation, rather than competition. Encouragement, Transparency, Engaging all with science. Inclusive, Encouraging Individuality, Cooperation, Creative, Innovative, Engagement. Critical, challenging, enthusiastic. Passion, Great at connecting the dots in a pattern that makes sense :) Principled, Generous, Profound, Profoundly fun.”

Science Online: Harassment Policy: http://scienceonline.com/scienceonline-harassment-policy/

Harassment Policy:
“Harassment includes offensive verbal comments related to ethnicity, religion, disability, physical appearance, gender, or sexual orientation in public spaces, deliberate intimidation, stalking, following, harassing photography or recording, sustained disruption of talks or other events, inappropriate physical contact, and unwelcome attention.”

(5)

I’ve said many times that my favorite piece on how to respond to negative comments on a blog post is the Air Force guidelines shared by Jeremiah Owang.

Air Force Blog Assessment

That said, while it provides a strong general foundation, there are special characteristics to science blogs that may benefit from a slightly different context or require different types of responses. This is especially true when you consider the community and culture of science, and compare that with the broader communities and cultures in which science occurs. Here is a recent post I found by Juliana Houghton, which discusses these issues from the viewpoint of students blogging about science. It’s worth reading.

Student Post: Science Blogging — A Veritable Troll Bridge for the Modern Age: http://www.engage-science.com/student-post-science-blogging-a-veritable-troll-bridge-for-the-modern-age/

“But when we’re writing about things like science, and especially the parts of science that we individually find inspiring and enlightening, we might not expect inflammatory comments that seemingly come out of nowhere. To complicate matters, in science we are trained to question and to respond to questions. It is doubt and questioning that pushes science forward and keeps us from resting on our laurels. Q&A sessions following scientific talks often contain questions that get at the very fabric of our research. We can (and should!) say “I don’t know” when we really don’t, but we also work hard to think carefully about those comments and not dismiss them just because we might prefer our present point of view.”

I loved that paragraph which placed science blogging in the context and culture of doing science. This next snippet is what echoes the Air Force policies mentioned above.

“Ask yourself, is this commenter presenting an alternate viewpoint or just a personal attack. If the latter, it’s ok to just leave a comment unanswered. Another way is to set up strict commenting rules on your site and follow through with moderating. If your rule is that comments must address the article’s topic and the comment simply calls the author a nasty name, then it never even needs to appear on the webpage (or can be quickly taken down by the moderator, depending on your settings).”

(6)

Last but not least, let’s look at science blogging in the broader context of academic and scholarly blogging. There are best practices and courses for those environments, also! Virtually all of what appears in the literature on academic blogging is relevant to science blogging. Jessie Daniels and Polly Thistlethwaite drafted a quite nice overview at Just Publics 365, which provides context beyond much of what has already been said — about the target audience, your readers, differences in writing styles between blogs and professional research venues, and more. They’ve made this available in a variety of formats.

A Guide to Blogging for Academics http://justpublics365.commons.gc.cuny.edu/2014/06/30/academic-guide-to-blogging/

1. Talk to Me: Acknowledge the Reader.
2. Just Say It: Don’t lead with a disclaimer or qualifier.
3. K.I.S.S. : Keep it Simple Scholar
4. Get in & Get Out.
5. No, It’s Not All Important
6. If You Have Something to Say, Say It
7. Don’t Let Perfection Be The Enemy of The Good
8. Scholarly Writing vs. Public Writing

The Academic’s Guide to Writing Online http://sociologysource.squarespace.com/storage/Academics_Guide_To_Writing_Online.pdf

Illustrated Blogging Advice for Researchers
http://justpublics365.commons.gc.cuny.edu/2013/09/11/illustrated-blogging-advice-for-researchers/

Media Skills for Scholars http://mediaskillsforscholars.pressbooks.com/

Just to connect that back to the science context, there is an older article about science blogging that has some similar insights, and which discusses why scientists blog. I found it interesting and useful to just break out the section headings from that article.

Bonetta, Laura. Scientists Enter the Blogosphere. Cell 129 (May 4, 2007):443-445. http://www.cell.com/abstract/S0092-8674(07)00543-0

Meet the Bloggers
Blogging to E-ducate
What is the Impact?
Why Aren’t You Blogging?
Blogging to Talk Shop
Communities of Bloggers

Closing thoughts

Do you know why you are blogging? Are there any of these best practices that you wish you did better? There are for me! We all have strengths and weaknesses, may be good at one thing and not so strong in other areas. I don’t usually have anyone read over my work before it goes live, and there are likely to be a lot of possible errors as a result of that. So far, I’ve scraped by, and I’m grateful that this is just a personal blog and that I don’t face the kind of audience and attention that IFLScience have. I’m not sure I’d do any better with the scrutiny than they are currently.

I did find many other resources along these lines. These are more the high profile pieces and overall context. I hope to have another post to simply share a lot of links that might be of further interest.

Radiation Oncology Journal Club (#RadOnc) – Hashtags of the Week (HOTW): (Week of September 29, 2014)

Screenshot of article's abstract.

JAMA: Use of and mortality after bilateral mastectomy … http://jama.jamanetwork.com/article.aspx?articleid=1900512

I’ve previously mentioned medical journal clubs on Twitter. Today I wanted to show some of what happens in the real conversation. The Radiation Oncology Journal Club (#RadOnc) has a very accessible model for managing the journal club and making it easy to engage in the conversation. After all, they know how busy doctors really are, and what scheduling is like. The journal club runs over the entire weekend. The conversation isn’t exactly synchronous (same time) or asynchronous (whenever), but rather semi-synchronous, a loosely defined time period where you can gather with friends and colleagues, but people tend to wander in and out of the conversation. However, it’s an international party, so you will hear comparisons about treatment standards in different parts of the world. They’ve explicitly stated that the journal club is bilingual, English/Spanish/Español, so there’s that to make it interesting (challenging) as well. Sometimes they are lucky, and can get the authors of the paper to step in and answer questions. One of the other quirky things about doing this on Twitter is that, even though the conversation is mostly other radiation oncologists and doctors, there are interested patients who come in and ask questions or share thoughts, concerns, and insights. It can be a great educational tool on both sides!


First posted at THL blog: http://thlibrary.wordpress.com/2014/09/29/radiation-oncology-journal-club-radonc-hashtags-of-the-week-hotw-week-of-september-29-2014/

Common Problems in Systematic Review Searches: Right Side Truncation? NOT! (A PreziTube Test)


Common Problems in Systematic Review Searches: Right Side Truncation? NOT! https://www.youtube.com/watch?v=WMLiozo-lwg

A couple days ago, I was offered a coupon / voucher to test PreziTube. PreziTube is a tool that automatically exports your Prezi presentation to a Youtube video format, both downloadable and with the option of automatically uploading to Youtube. For this test, the automatic upload option ended up in their Youtube account, not mine, and I am not sure if there is an option to work around that if you pay for the privilege.

Playing with Prezitube & iMovie
PreziTube: http://prezitube.com/

Now, I’ve had issues for a LOOOONG time with the lack of accessibility in Prezi. This seemed like a tool that might help with some portion of that process, so I was interested. Definitely interested.

I went to Prezi to find whichever of my Prezi presentations is the most popular. Ah, yes, one on systematic review searching and truncation.

Systematic Review Searching: Right-Side Truncation? NOT! http://prezi.com/77qy3sfhq_tv/systematic-review-searching-right-side-truncation-not/

I put in the link and the voucher code and gave it a try.

Playing with Prezitube & iMovie

Prezitube offers a variety of timing options, but the assumption is that each “slide” within the Prezi will receive the same length of time. Since this presentation was rather text heavy, and I wasn’t sure just how long these times, I went for the middle. The range offered is from 4 to 30, and for this video I chose 15.

I downloaded the video, wished I had an audio voiceover, but didn’t want to take the time, so I just grabbed some amusing-to-me public domain audio from the Internet Archive, and spliced that in with iMovie. I have access to other video editing tools, but I wanted to see what could be done with virtually no resources.

Playing with Prezitube & iMovie

And the link to the audio track used.

Kay Kyser – Some Day I’ll Find You 1937 (posted as “Kay Kaiser&kollegeOf MusicalKnowkege10f2″) https://archive.org/details/KayKaiserkollegeofMusicalknowkege10f2

Now, this took almost no time at all. It probably took me about a half hour to make the video. It took me about 2 hours to upload it to Youtube, because Youtube was being glitchy that day. Not great, but absolutely worth a half hour of my time.

Now, do I want to do this for more Prezis? The free version gives you tiny videos and you can’t download. For $6.99 you may download and get high resolution videos, with support if something goes wrong. Hmmm, maybe, maybe. Maybe next time, I’ll do the systematic review Prezi on phrase searching.

Systematic Review Searching: Word Order in Phrase Searching http://prezi.com/vrzaimpaignp/systematic-review-searching-word-order-in-phrase-searching/

Patients on the Right TEDMED Questions – Hashtags of the Week (HOTW): (Week of September 22, 2014)

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 healthy people (non-patients) in healthcare?

TEDMED Great Challenges: Role of the Patient (photo by Dr. Nick Dawson)

Last week, we talked about the trend toward patient engagement in events that may have previously been focused almost exclusively on medical professionals. A spin off from that rich conversation was when the patient advocates began to question what are the right questions to be asking about patient engagement. Even more impressive, TEDMED was sometimes asking if they have the right questions, so this is a conversation valued from several perspectives.

What I’m observing, however, is a sense of not being included on the part of patients, and a strong need for greater engagement by patients in the process by which TEDMED develops their questions and Great Challenges. Just in case there are those who aren’t aware of this, TEDMED has an online community space where these matters are discussed. Anyone can create an account and ID for participating in this conversation. Know someone you think should be participating? Ask they if they’ve joined, or better yet, invite them.

TEDMED: Great Challenges: http://www.tedmed.com/greatchallenges

TEDMED: Account Creation: https://www.tedmed.com/accounts/login?redirectto=%2Fgreatchallenges&ref=account-login

Here are some of the tweets from that tangential conversation, beginning with the one that started it all.


First posted at THL Blog: http://thlibrary.wordpress.com/2014/09/22/patients-on-the-right-tedmed-questions-hashtags-of-the-week-hotw-week-of-september-22-2014/

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.

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/