Category Archives: Health, Healthcare, Support, Science

Suicide Prevention & Trauma on Social Media – Hashtags of the Week (HOTW): (Week of October 6, 2014)

TRIGGER WARNING - Suicide Posts on WHISPER

Sunday night I participated in a very interesting chat on Twitter. It was part of the #SPSM chat, which stands for Suicide Prevention and Social Media. The chat was about an experience I had last summer. To make it overly brief, I ended up in an extended conversation with a suicidal person through an anonymous social media service, and I didn’t know what to do, how to do, or even whether to do anything. At that time, I was curious, and explored social media posts that state suicidal ideation or intent on several platforms, such as Facebook, Twitter, Pinterest, and so forth. Pinterest tended to say, “So CUTE I want to die” (with a few boards collecting sad stories). On Google Plus the results for “want to die” mostly brought up posts about animals in shelters scheduled for euthanasia. There were a few on each of Facebook and Twitter, but they tended to be mostly people using the phrase lightly for purposes of emphasis and drama, and more important, they rarely if ever show up in a normal Twitter stream. You have to go out explicitly hunting for them, as I did for this screenshot.

TRIGGER: Twitter Search: "want to die"

Once you shift over to the anonymous social media services, like Post-Secret, Secret, 6 Billion Secrets, and Whisper, it’s a different story. You can hardly turn around without tripping over a post that expresses some sort of suicidal thoughts or other emotional trauma, or worse, posts fantasizing about hurting other people. When I check Whisper, I’ll often see posts like those at the head of this blogpost, with timestamps of “1 minute ago” “46 seconds ago” and so on. The vulnerable posts can elicit comments ranging from heartfelt support to vicious attacks, which is a bit part of why the creator of Post-Secret shut down that app. My experience came on Whisper. Here are a couple other links showing some Whisper content.


Ashley Beckner: Whisper App Confessions: http://www.youtube.com/watch?v=haTbJrwDnYM

13 Eye-Opening Confessions From Men In Abusive Relationships http://www.buzzfeed.com/rachelzarrell/13-eye-opening-confessions-about-the-male-victims-of-domesti?bftw&utm_term=4ldqpfp#u9lop

16 Heartbreaking Anonymous Secrets: The anonymity afforded by Whisper often means we get a harrowing, intimate view of people’s daily struggles. http://www.buzzfeed.com/alanwhite/16-heartbreaking-anonymous-secrets#u9lop

In last night’s Twitter chat, some of the issues that came up included:
– challenges with the ethical underpinnings of anonymous social media services;
– challenges on anonymous services to find out where the person is, gender, other identifiers for rescuers;
– the idea that calling 911 for help for a person is a breach of community standards (like ‘narcing’ in drug culture);
– geographic challenges in locating assistance when the person is in a different country;
– different cultural standards for appropriate response to suicidal intent;
– legal challenges when the service refuses to identify the anonymous suicidal user except to police in the country of origin for the service (and not in the country of residence for the suicidal person);
– and much more.

Here are some of the tweets from last night’s chat.


First posted at THL Blog: http://thlibrary.wordpress.com/2014/10/06/suicide-prevention-trauma-on-social-media-hashtags-of-the-week-hotw-week-of-october-6-2014/

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/

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/

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