Tag Archives: social media

In My “Drafts” Pile

M-BLEM Workshop at UMich

This winter has been a rough one for my family. Lots of family crises, illness, injury, etcetera. What that means is that the blog slows down, projects slow down, I get way (WAY) behind on things I wanted to do and wanted to share. In the past month, my collection of unfinished (“draft”) blog posts has exploded. What normally happens then, is that I actually finish a couple that someone asked for, whatever else is most fresh in my mind, and the rest never happen. I thought it was about time to give folk a chance to comment on what they want, so that I do write up things people have asked about. Also, several of these were planned to be brief expansions of Storifys or Slideshare decks that I made or found and wanted to share, so for those, I’ll just put links in for now, and will expand on them later, maybe, if you ask.

#a2wiad – Ann Arbor’s Stake in World Information Architecture Day

Anonymous Social Media Overview, Part Four: More on Risks, Opportunities, Benefits, Ethics

Biobanks & Biobanking

Comics & Healthcare

Cool Toys U: September 2014 Notes

Cool Toys U: October 2014 Notes

Designing a Tablet Computer for the Elderly & Technophobic

Design plus Business [NOTE: There is a LOT more I need to add into this story! Cool stuff!]

#HCSMCA on “Is Academic Peer Review a Dead Man Walking?”

Infographic of the Week: Public Attitudes to Science 2014

“Live Long & Prosper”: Can Emotional Intelligence Be Taught? #HCLDR [NOTE: Linked is Joyce’s Storify on this, but I wanted to do one with a different focus]

MBLEM Workshop

MEDLIBS on the Horizon Report 2015

My Physical Therapy & My Tech

Peer-to-Peer Sex Education in Social Media & Games

Phoebe Gloeckner

Random Round-up: Cool Things Tech is Doing with Poop

Report Out: The Happiness, Health, and Stories of Populations (#umcscs)

Selecting Online Resources for MOOCs

Sexpertise 2015

Should She? Or Shouldn’t She? Sharing YOUR Pics

Strategies for Better Science Blogging, Part 2

Symposium: Thirty Years of “Thinking Sex”

A Culture of Blame: Stigma in the ER (Rare Disease Day 2015)

Emergency Room Visit (November)

Today is Rare Disease Day. I love Rare Disease Day. I’ve loved it for a long time. Usually I try to blog something upbeat, useful, and inspiring (2014, 2013, 2013b, 2012), but that’s not what’s going to happen today. Today it is time for a sad, disturbing story; one of stigma, assumptions, miscommunication, misunderstanding, anger, hurt, laughter, pain; all nicely wrapped up as a great example of social media gone wrong.

Something I know from personal experience is that when someone has an undiagnosed, misdiagnosed, or mismanaged health care condition, they tend to get to a point where they spend an unusual amount of time in the Emergency Room. These are, shall we say, usually not a person’s happiest moments. People with rare conditions are more likely than not to have gone through a period of time in which their condition was not properly diagnosed. There are excellent reasons for this, with the largest one being that clinicians are taught explicitly to err on the side of assuming their patients are relatively ordinary, rather than extraordinary or unusual, or rare. This is included in medical slang as the word “zebra,” implying that people’s diagnoses are more likely to be a “horse.”

Rare Disease Day 2015
Rare Disease Day 2015, by Violent Bloom.

Thus, the patient who genuinely IS rare, while statistically unlikely to appear under the care of any particular healthcare provider is rather more likely to have experienced a great deal of misguided, inappropriate, and ineffective care. They are also likely to have experienced these trained-in assumptions presenting in uncomfortable ways which undermine them as a credible person, from “if you’d just try” to plain old rudeness to being told “it’s all in your mind.” And when healthcare professionals find it hard to believe the suffering person, often their friends, family, colleagues, and acquaintances follow suit. These comments, rarely intended to be hurtful, but hurtful nonetheless, have been being captured via Twitter with the hashtag #heardwhilstdisabled.

Twitter: Heard Whilst Disabled: https://twitter.com/hashtag/heardwhilstdisabled?src=hash

I learn a lot about compassion and the real lives of persons with chronic illness from conversations on Twitter, on Facebook, and from lurking in support groups for various conditions. Usually, I joined the group when I myself was misdiagnosed with some condition, as part of my own rare disease journey (although mine turns out not to be so terribly rare, just rarely diagnosed). There are a lot of these groups, countless ones. Even just looking for chronic pain groups on Facebook, there are easily close to 100 of them! In these groups (and on Twitter, and in other social media spaces), something that comes up almost every day are stories of someone who went to the emergency room, and was unable to get the care they believed they needed and deserved because they were assumed to be a) drug seeking; b) attention seeking; c) misrepresenting their symptoms; d) liars; e) mental health patients (which is too often interpreted as not a credible reporter, or the pain “is all in your head”); f) that they don’t really have the condition they say they have; g) … well, it goes on and on.

Yesterday, in one of these support groups, someone alerted the rest of the group to a blogpost written last week by an emergency room nurse that has taken off in a rather viral way. And it is spreading. People are sharing the post to other support groups. Patients are up in arms. They are complaining to her employer. They’ve phoned her supervisor. They are filing official complaints. It’s all a nasty piece of business. Meanwhile, the nurse in question posted the link to her own Facebook page in a jocular way, with public viewing permissions, and various healthcare colleagues and friends have gone to town with it, joking, sending virtual high-fives, and sharing it. Widely. Lots of comments and around 50 shares. The blogpost itself has, as of this writing, well over 115,000 views, according to the counter on the page. Just to make it even more … awkward, the blogpost itself and the comments on the Facebook post both imply that this was written while the nurse was on duty at her job, as triage nurse in the Emergency Room.

trauma blur
Trauma Blur, by Mike Beck

OK, brace yourself. Here’s the post that has the patient communities so upset, and the nursing community so entertained.

Wainwright-Morrison, Kimberley. Confessions of an ER Nurse: This is probably your fault, not mine. Feb. 23, 2015. http://www.kimberlywainwright-morrison.com/413380011/2549810/posting/confessions-of-an-er-nurse-this-is-probably-your-fault-not-mine

Where does this go wrong? In the title, as soon as the word “fault” is used. “Fault” implies “blame.” Placing blame is a great way to attract blame. It immediately creates an us vs. them mentality. Because this is written by a nurse, the title alone will tend to push patients to feel defensive, and to likely misunderstand the intended message of the post. If the point of the post is to actually change patient understanding of the emergency room protocols, policies, and capabilities, it needs a new title. If the goal is to change patient behaviors, ditto. Some of the (presumed) nurses on Facebook suggested giving every patient a copy of this post at the triage desk. Hmmm, might want to rewrite it a bit first.

The focus of the Wainwright-Morrison post is on the non-compliant patient, a topic which is kind of a pet peeve of mine. Not to diverge too much (and I’ll try to make a separate post on ‘noncompliance’), I’ve been writing about this for a very long time. In our 2002 book, I argued in favor of the idea that “patients have reasons for being non-compliant,” that calling patients non-compliant is actually patient-blaming and unproductive, and that informed consent implies people deserve the right to make decisions which the experts might not agree with.

“Our personal belief is that it is neither realistic nor ethical to attempt to control or proscribe access to health information. Nor is it realistic or ethical to legislate or prescribe what health care consumers do with health information once they find it.” PF Anderson. “Introduction: Empowering Patients.” Anderson & Allee. Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web.

The problem with the term “non-compliant” is that as soon as that phrase enters the conversation it places blame for the patient’s problems on the patient themselves. It also absolves the healthcare system of the need to find out why the patient isn’t “complying.” Did they not understand the directions? Did they understand but disagree with the instructions? Does the patient believe that a different medicine or treatment would be more appropriate? Does the patient have the support system in place that would make that treatment even possible? Could they not afford the medicines? Could they not get to the pharmacy? Could they not arrange delivery? Did they believe that they already have another medicine they think will do as well? Did they take the medicines at the wrong day/time/place? In the blogpost, there is a stated assumption (judgment?) that if a patient “can’t afford” the medicine, that they are actually lying and choosing to instead spend money on other optional pleasures.

“It is not appropriate for you to save your last $30 for your manicure or your beer or your cigarettes. You can afford a prescription. MAKE IT WORK. Everyone else has to take care of themselves; I think you can also manage.”

Which leads to more questions — does the patient actually have the executive function capabilities that would allow them to control the impulses and “make the right choice”? Is the pain or disability or condition effecting on their memory? Did the healthcare provider explain things in a way that the patient actually understood? Did they confirm that understanding? Did the patient just nod and say, “Yes,” whether they understood or not?

Now, despite my admitted bias against a focus on the “non-compliant patient,” part of what drives me in this direction is in an effort to counterbalance the enormous numbers of folk actually working in healthcare who feel the opposite. I suspect that deep down, we are saying the same things, just in different ways, but the way you say a thing, the way an issue is framed, can completely change how it is heard, how solutions are designed, and how effective those solutions might be. And obviously, there are a LOT more people who feel differently than I do about the idea of calling patients non-compliant. Most of them have hearts as big as all outdoors, and they GENUINELY really want to help patients and help make their lives better.

Which is the case for Ms. Wainwright-Morrison. She is a good person. She loves her job. She means well. She works hard. She tries to make a difference in ways that count. She tries to help people, both at work and on her own time. She takes time outside of work to help multiple charities; she is on the coordinating team for “Giving More” a non-profit focused on helping those in need. In her bio on the Giving More site, Ms. Wainwright-Morrison describes herself as “passionate about educating her patient population in regards to making their health and compliance a priority in their lives.” I respect that. I respect what I believe she is trying to do, hoping to accomplish. I do not feel that this particular blogpost succeeds in moving those goals forward.

In the patient forums, I’ve been reading post after post that takes the blogpost apart, line by line, example by example. Patients are telling story after heartbreaking or uplifting story of times when what happened in the emergency room in their lives does not match the descriptions provided by Ms. Wainwright-Morrison. Patients with the conditions she explicitly addressed (such as high blood pressure and sickle cell anemia) were particularly offended.

On the other hand, there are many other nurses, healthcare providers, and emergency room workers are emphatic that the blogpost accurately describes some common categories of patients. Many feel strongly that Ms. Wainwright-Morrison is being honest, accurate, and should be protected from the public outcry against the blogpost.

One particularly sad bit of collateral damage from this was a nurse with chronic pain in one of the support groups. She tried to explain to the other patients in the forum that what is described in the blogpost reflects standard policy in most Emergency Rooms, that there is a HUGE disconnect between what patients expect from the ER visit and what ER teams are actually allowed to do. She also explained that nurses tend to stick together, because they understand what they go through in their job, something that may not be understood by either patients or doctors. For this, she was banned from the support group. This breaks my heart.

So, this is sad, sad, sad, all the way around. Patients are hurt. Nurses are hurt. The reputation of the hospital is being hurt. The structure and nature of the support group(s) is/are being damaged. I don’t see anyone coming out ahead with this the way it is taking shape right now. It’s a lose-lose all the way around. People are on the attack or on the defensive. The conversation is polarized, instead of becoming collaborative and solution-focused.

I do NOT want to see Ms. Wainwright-Morrison lose her job, unlike some others, because this is a problem that is rampant throughout healthcare, because she was and is being encouraged to hold these opinions by the culture of her institution. I would like to see solutions being focused at an institutional level instead of individuals. Just because these opinions could cause serious reputation problems for her and her institution does not mean that making her a scapegoat would be a productive path to follow. Actually, I suspect the reverse. As long as institutions are permitted to “address” systemic cultural attitudes and issues by making scapegoats of individuals, the underlying attitudes will never change. Behaviors might change, in public, but it won’t actually support REAL change, the kind that is needed.

We need change. We need cooperation and collaboration in changing from an assumption of “non-compliance” to discovering and addressing the barriers to healthcare solutions and treatments for each person.


Rare Disease Day: http://www.rarediseaseday.org/
– Rare Disease Day Flickr Stream: https://www.flickr.com/photos/rarediseaseday/
– Rare Disease Day US: http://rarediseaseday.us/
– Rare Disease Day Virtual Swag: http://www.rarediseaseday.org/article/get-involved-download-our-communication-materials

NIH: Rare Disease Day: http://rarediseases.info.nih.gov/news-and-events/pages/28/rare-disease-day

Global Genes: Rare Disease Day: http://globalgenes.org/world-rare-disease-day/
– Global Genes: RDD Virtual Swag: http://globalgenes.org/wear-that-you-care/
– Global Genes: Genes and Jeans (Awareness Ribbon): http://globalgenes.org/blue-denim-genes-ribbon/

UPDATE March 5, 2015

DELETED: The posting in the original support group site.
DELETED: The patient posts and commentary to the hospital’s Facebook page.
DELETED: The original blogpost.
DELETED: The entire domain name for the nurse’s blog.

I don’t know what happened with the nurse. Of course, I kept copies and screenshots, just in case something like this happened, but I still feel this is unfortunate. I thought this had the potential to be an opportunity for learning & conversation & change. That’s unlikely now. And that’s sad. We need the change, the conversation that leads to thinking differently, hearing each other’s side, learning to understand the other’s point of view. We don’t need bullying. We don’t need silence around these issues. What we need is understanding, mutual understanding, and the opportunities to create understanding.

Risk Bites Ten Thousand! (Or, The Bravery of Academic Discourse On Youtube)

"Help us unleash the Elements of Risk Song!"

I LOVE RISK BITES!!! Ok, there you have it. I confess. Here is part of why I like them so much. You see, I don’t just love Risk Bites. I love a LOT of Youtube science education channels. But of the top science channels on Youtube, the ones with a huge fan base and almost aggressive vitality, most of them are either created by kids, young adults, and hobbyists, or they are from huge big money operations. (Please see the APPENDIX at the bottom of this post for more about “What do popular science channels look like?”) What’s missing? Academics and professionals.

And why not? Why shouldn’t there be popular science video channels from academics? WHY NOT?

Yes, universities have Youtube channels and make videos highlighting research by their faculty. Typically, they don’t go viral. Look at them, and you can tell why. They’re good, but dry. They are just not going to get the eyeballs in the same way. They aren’t, well, FUN! A lot of the reason why they aren’t fun is that they’re afraid. They’re afraid of not looking academic. They’re afraid of what their peers will say. They’re afraid of taking the risk, and maybe having someone misunderstand what they said. They’re afraid of looking silly.

MLGSCA09 Cerritos: SocMed Risks - Looking Silly

Academics tend to judge other academics. They complain bitterly when the general public won’t listen to them, but on the flip side, God help any academic who does succeed in getting public attention for communicating science well. Typically, they are ridiculed and undermined by their academic peers. We, as academics, as institutions of learning, need to cut that out. When we belittle and criticize other academics for communicating effectively with the public, it makes all of us look bad. It undermines the credibility of all of science. It weakens our justification for funding, and the understanding the public has of what we do. If you have to criticize another scientist or researcher, stick to the science, and don’t blame them for “being popular.”

Risk Bites is brave. They take the risks that other academics are often afraid to take. They talk about important and sometimes controversial topics. They do so in an engaging and still accurate way, sticking to the good science, and providing more resources in the notes for people who want to explore or learn more. They engage in the conversation with people who comment. They even make videos responding to points brought up in conversation. They are building a community.

Risk Bites is the best example I know of an academic or professional voice that intentionally, purposefully, and responsibly positions itself in the space inhabited by FUN science education videos. Here is more about the background and thought behind what they are trying to do.

So, when I say I love Risk Bites, I am not just talking about the great videos, or the quality of the content, or the awesome and relevant timely selection of topics. I’m talking also about the vision, the mission, the willingness to take risks, the BRAVERY of what they are doing. And I passionately want others to notice, pay attention, and support this grand effort.

When I heard that Risk Bites has a subscription drive, I wanted to write this. I want you to stop and think about how academic science information in Youtube compares to the popular science channels. Check out Sixty Symbols, from the University of Nottingham. That is the only popular science channel I could find from an academic source. Think about why more of us aren’t there, why WE aren’t there, why YOU aren’t there.

And then I want you to do the right thing. I want you to help to get eyeballs on another strong academic science voice in Youtube. I want you to support the people who are brave enough to try. I want you to go to the Risk Bites channel, watch some of their videos, comment, ask questions, tell them what they can do better, and SUBSCRIBE!

Help us unleash the Elements of Risk Song! https://www.youtube.com/watch?v=neOQEEAiwQM&list=UU8cxoTk9M0HdZB3gyJNjEtw


VSauce 8,016,315
National Geographic 3,597,161
ASAP Science 3,146,879
VSauce2 3,096,072
Minute Physics 2,573,651
Charlie Is So Cool Like 2,402,791
SciShow 2,234,369
Smarter Every Day 2,194,233
VSauce3 2,112,344
Veritasium 1,965,852
Discovery 1,257,189
Mental Floss 1,123,990
Animal Planet 985,375
Minute Earth 918,132
NatGeoWild 649,592
PBS Idea Channel 580,887
Periodic Videos 500,874
NASA 450,711
The Verge 432,404
Sixty Symbols 426,072
Sick Science 399,926
Discovery TV 330,897
Science Channel 266,605
The Brain Scoop 248,660
SciShow Space 246,757
It’s OK to be Smart 239,810
Best0fScience 162,251
Bizarre ER 159,184
Spangler Science TV 146,369
Hard Science 131,431
New Scientist 117,609

Anonymous Social Media Overview, Part Three: The Whisper Controversy & Beyond

I had said in Part Two of this series that I was waiting to talk about the Whisper Controversy because it was still unfolding so dramatically. Things are starting to wind down, and so last night I put together a Storify mapping out my perspective of the timeline of how this has all been happening.

Briefly, Whisper was trying to do a good thing, but it seemed to go wrong.
Guardian called them out on issues related to privacy & user tracking.
Story exploded.
Whisper defended themselves (mostly via Editor-in-Chief).
More explosions.
Guardian gleefully expanded on their original story.
Yada yada.
Whisper tries to regain trust (mostly via CEO).
Editorial team “laid off” pending investigation.
And now the clean up work starts.

Check the Storify for more details and specifics.

Meanwhile, Whisper is not alone. Far from it! Snapchat was hacked. Snapchat is probably the most famous anonymous social media app right now. Before they were hacked, all sorts of people were making tools (1, 2, 3) to “break” Snapchat’s rules about keeping copies of deleted pictures without permission. (The same sort of thing is happening on other ‘anonymous’ social platforms, like Tumblr with KnowAnon. And people posted private sex tapes on YikYak, which is also infamous for cyberbullying and violence and threats.) And the Federal Trade Commission is investigating some of the problems with Snapchat. People still trust and use Snapchat. And there are apps designed explicitly to, well, invade your privacy on an opt-in basis, like PeekInToo. This post has focused on the privacy issues, but violence, dishonesty, and cyberbullying remain significant issues in many online spaces. So, that’s the bad news. In the next post, I’ll look at some of the good things being done with social media.

Residency Education & Care in the Digital Age – Hashtags of the Week (HOTW): (Week of October 27, 2014)

International Conference on Residency Education

The big hashtag splash in Twitter’s healthcare universe this week was the International Conference on Residency Education, with a theme this year of Residency Education and Care in the Digital Age (English Program) (Abstracts) (Facebook). Pretty darn awesome, if you ask me. Two hashtags, for two languages.



Topics ranged from social media to apps to flipped classrooms to Facebook to fatigue to professionalism to other innovations in learning.

Anonymous Social Media Overview, Part Two: Selected Anonymous Social Tools

Anonymous Social Media Overview

I find it a little ironic that the big blowup with Whisper happened this week, while I’m in the middle of this series about anonymous apps (Part 1). Oh, you didn’t hear about that? Well, the gist of it is if you think you’re anonymous, you’re not; if you think they aren’t tracking you, they are; and that the only place that really destroys your usage information completely after you’re done is probably your public library, and even that is becoming iffy. But that is a topic probably best suited for the NEXT post in this series, since the conversation around the exposé is still expanding dramatically. Here’s just the intro piece.

Paul Lewis and Dominic Rushe. Revealed: how Whisper app tracks ‘anonymous’ users. The Guardian Thursday 16 October 2014 11.35 EDT. http://www.theguardian.com/world/2014/oct/16/-sp-revealed-whisper-app-tracking-users

What I wanted to do in this post was simply walk through a quick introduction to some of the more prominent tools and services in the anonymous social media space. What has struck me is that while many of these are general, others target fairly specific audiences, such as high school students with YikYak, youth with Snapchat, and corporate with Confide.


Cloaq http://www.cloaq.co

Confide https://getconfide.com

Ello https://ello.co/beta-public-profiles

Peek https://itunes.apple.com/us/app/peek-for-iphone/id722634039?mt=8

Peek In Too http://www.peekintoo.com

PostSecret http://postsecret.com

Rumr http://rumrapp.com

Secret https://www.secret.ly

Six Billion Secrets http://www.sixbillionsecrets.com/top
Six Billion Secrets on Tumblr http://sixbillionsecrets.tumblr.com
Six Billion Secrets on Twitter https://twitter.com/6BillionSecrets

Snapchat https://www.snapchat.com

Sneeky http://www.sneekyapp.com

Social Number http://socialnumber.com

Spraffl http://www.spraffl.com

Spring (formerly Formspring) http://new.spring.me/

StreetChat http://www.streetchatapp.com

Tumblr https://www.tumblr.com/

Whisper http://whisper.sh

Wut http://www.wutwut.com

YikYak http://www.yikyakapp.com

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/