Tag Archives: communication

Bioethics & Bias — Hashtags of the Week (HOTW): (Week of January 6, 2014)

Bioethics

During last night’s #HCSM Twitter chat, the conversation began with what changed in healthcare social media during 2013. What I particularly noticed was the shift from including ethics and bioethics in broader Twitter conversations (on health, medicine, policy development, palliative medicine, and so forth) to Twitter chats explicitly focused on bioethics.

I’m particularly impressed that the #BIOETHX chat was just founded in October of last year and has rapidly become one of the “always-trending” influential hashtags in healthcare on Twitter. The most recent #BIOETHX chat was on sexuality and gender, with prior chats on research ethics, competence & decision-making, CAM, disability ethics, and medical disclosure. They meet at 8:30PM Eastern Time for their weekly Twitter chats, so please drop in tonight for their chat on brain death.

On a related note, the medical librarians community this year founded another Twitter chat on a related topic – healthcare disparities (#MLAdisparities), for which the inaugural topic in December was implicit bias. In today’s post, I’d like to highlight tweets from these two hashtags as an indication of the growing maturity of Twitter for discussing the hard issues in healthcare.

BIOETHICS / #BIOETHX

BIAS / IMPLICIT BIAS / #MLADISPARITIES


First posted at THL Blog: http://thlibrary.wordpress.com/2014/01/06/bioethics-bias-hashtags-of-the-week-hotw-week-of-january-6-2014/

Hashtags of the Week (HOTW): About Communication (Week of November 25, 2013)

This past week saw several events and Twitter chats which included sub-conversations about the impacts of communication. This was communication in patient care, in education, in libraries, and even the research of conversation analysis and the rhetoric of communicating.

Where was this all happening? The Annual Convention for the National Council of Teachers of English (#ncte13), which overlapped with #ALAN13 and #CEL13; the mind-blowing #BBUM conversation last week about “Being Black at the University of Michigan”; the weekly #hcsm chat I mentioned last week; and the #MLibRes presentation this morning. The conversations were tough, gritty, real voices exploring the problems, challenges, impacts, and potential for change in how communication, terms, context, and assumptions touch our lives and the work we do. There are lessons for those involved with recruitment, diversity, content selection & curation, and patient care. Each tweet worth at least a read, and then worth thinking about a little bit more.

#NCTE13 / #ALAN13 / #CEL13

#BBUM

#HCSM

#MLIBRES


First posted at the THL Blog: http://thlibrary.wordpress.com/2013/11/25/hashtags-of-the-week-hotw-about-communication-week-of-november-25-2013/

“How Many Hives?”: Social Media Can Prevent a Crisis with Storytelling, Engagement, & Training

Michigan RenFest 2010

This post is about food allergies and communication strategies. But let’s step back a bit and see how I got here.

Yesterday morning early (for me, but not for most docs), I attended the local Pediatrics Grand Rounds with presenter Joyce Lee. Joyce was talking on Twitter uses for clinicians and researchers. That will be another blogpost, once I have a chance to work through some of the content presented. For today, I wanted to highlight one particular bit that Joyce presented about kids with food allergies. I had somehow previously missed this, and it is too good to miss! I am particularly interested in this since both my son and I also have food allergies.

Joyce is a pediatrician (I’m oversimplifying), and a mom of kids with pretty severe food allergies. She’s also very engaged in new technologies and is interested in new learning modalities and social media. That gives a bit of context for how she and her son came up with these phenomenal and effective ways for him to both learn and communicate what he needs to have for health care crisis prevention and support from the people around him. Frankly, from what I’m seeing here, he is MUCH better at being aware of his needs and communicating them than I am. This is also a very cool idea that I wish I had thought of when my kid was in need of this. I have a lot to learn here, and this strategy would have prevented a whole boatload of problems & events for our family over several years. This is GENIUS, pure and simple.

Joyce’s son, “B,” has severe food allergies. Note that they use a letter “B” instead of his name? This is to protect his privacy on social media. This is a good best practice, and one the kids should learn and adopt as well as the parents and teachers. And family friends, and pastors, and acquaintances, and … EVERYONE! Please, DON’T use a kid’s real name online!

The problem with food allergies, which I’ve faced, is at school other kids and teachers don’t understand and can inadvertently poison the poor kid. I remember how I wept with anger and frustration when I discovered that the school therapist my son was seeing was rewarding him for good behavior with foods that triggered undesirable behavior, and then sending him back into the mainstream classroom. I bet his main teacher wasn’t too happy either, and Lord alone knows how much school he missed from the migraines triggered by the dangerous foods. For B, a mistake like that could kill him.

PART ONE

So now, Joyce’s son has a blog.

I Have Food Allergies
I Have Food Allergies:
http://ihavefoodallergies.tumblr.com/

On his blog, he has his Youtube videos. This is the storytelling part of the post. Part One describes how to tell if he’s having a reaction, and what to do. Part Two describes how to avoid poisoning him, since it isn’t always obvious (as I am STILL learning, with my own food sensitivities). Here is the first video. When she showed this in Grand Rounds, the entire room full of doctors and nurses and other hospital staff were ooohing and aaahing and laughing. It is a very charming and effective way to deliver this lifesaving content. That’s the training part.


Allergy Action Plan (Antihistamine versus Epipen) http://www.youtube.com/watch?v=6Ymah1199xo

Joyce wrote a separate blogpost that explained the background, mechanics, theory, and how this was made.

Online Peer to Peer Education or shall we call it Peer to Teacher Education?
http://joycelee.tumblr.com/post/31910454867/online-peer-to-peer-education-or-shall-we-call-it

This is pretty cool stuff. Even more cool, the school decided to show the video to all of the kids in the school, 700 of them, and all the teachers. That’s the engagement part. Even more engagement, a blogpost by Wendy Sue Swanson (a.k.a. Seattle Mama Doc) brought more attention to this. Would this video help others understand food allergies? Does this training from this one young boy extrapolate to other kids and families?

Bring Paperwork To Life: Food Allergies:
http://seattlemamadoc.seattlechildrens.org/bring-paperwork-to-life-food-allergies/

PART TWO

Now, for comparison, let’s take a look at what a food allergy action plan normally looks like.

Food Allergy Action Plan
Food Allergy Research & Education (FARE) (www.FoodAllergy.Org): Food Allergy and Anaphylaxis Emergency Care Plan: http://www.foodallergy.org/document.doc?id=234

I’ll tell you, this is vastly more attractive, clear, and engaging than what they had when my now-college-age son was in school. Still, despite the vast improvements, it is a little scary to read through, especially if you are the one responsible for saving the life of someone else’s kid. It gives you the information, but it doesn’t make you laugh, or hear the kid’s voice when they describe how it feels for them when things go wrong.

The second video is my favorite. Less dire, but it covers all the information I need so desperately to communicate to my colleagues, restaurants, and friends. How do you not poison me? Wash the table, wash your hands, be wary of tricky foods. I especially love the part about tricky foods.


Allergy Action Plan, Part 2 (Please don’t poison me) http://www.youtube.com/watch?v=EGG6_EuK3oM

I wish so much I could make every restaurant employee in the country watch this video. And have it translated into other languages. My family spends a lot of time embedded in Japanese cultural activities, which includes Japanese restaurants. My main problem is with gluten, and you’d think I’d be safe there since their cuisine is based heavily on rice. You’d have trouble believing some of the bizarre experiences I’ve had in Japanese restaurants because of the language barrier — servers who bring me the gluten-free soy sauce, and then bring my food already doused with regular soy sauce. Oh, miso? Yes, it has wheat in it. (After I’ve eaten it and my mouth is tingling and swelling.) So why did you bring it to me? [Imagine a cranky face. More than cranky.]

Here Joyce explains more of the outcomes from the first video and considers aspect that might explain why it has proved so effective.

Allergy Action Plan Part 2: http://joycelee.tumblr.com/post/36728442953/allergy-action-plan-part-2-its-been-a-while-since

PART THREE

Did they stop there? Of course not!

One of the challenges of food allergies is that despite massive fine-tuning of your lifestyle, education of others, and so forth, there is no point at which you are completely safe, no point at which you can stop being aware, when you can rest and relax and trust that you are safe. But all of us have times when we’re tired, worn out, just not on top of our game, and must trust others to watch out for us when we aren’t quite doing such a great job ourselves. Something always happens. It is just when you get to the point of feeling safe, let down your guard, and that’s when it happens.

The videos are awesome and amazing, but what about when you aren’t online, when the class is outside or on a field trip? Joyce and B have made nametags, bookbag lists, and collaborated on making a booklet with his information. Kind of a quick reference as a backup for the content in the videos. Even better, they’ve made the original files available free online for other families and parents to use.

DESIGNING FOR HEALTH: A PEDIATRIC PROTOTYPE FOCUSED ON ALLERGIES http://joycelee.tumblr.com/post/50507408498/designing-for-health-a-pediatric-prototype-focused-on

Check out the blogpost for the other file links, but here is the PDF of the insides of the booklet.

Allergy Booklet: https://dl.dropboxusercontent.com/u/1112237/nametag/allergy%20booklet_51213.pdf

MORE

Joyce is not the only parent using social media to get out their story about food allergies, trying to get people to understand what it’s like. The more people understand, the safer life will be for those of us with food allergies and sensitivities. Here is another post from Seattle Mama Doc to round out the information in the post, and provide more context. These aren’t part of Joyce’s official story, but I bet she’s familiar with this stories. I know I am.

Four Hours on a School Bus: http://seattlemamadoc.seattlechildrens.org/four-hours-on-a-school-bus/

Here is a little more information. The basics, all in one small tidy package, and a couple useful links to learn more.

Don’t Be Shy About Food Allergies http://seattlemamadoc.seattlechildrens.org/dont-be-shy-about-food-allergies/

Food Allergy Research and Education (FARE): http://www.foodallergy.org/

Kids with Food Allergies: http://community.kidswithfoodallergies.org/pages/community

Hashtags for Twitter Cancer Communities

Top ten hashtags associated with #cancer

Librarians have been geeking out, or grossing out, over hashtags since they first appeared. Some of the conversation has been about concerns over ‘allowing’ the public to define their own metadata, while much of it has been the flip side of trying to engage the public in generating metadata for library online collections, and thus enriching access and awareness for those collections.

Naturally, the general public simply move forward with creating new hashtags for their own purposes, largely unaware of the conversations and concerns of professionals in the area of metadata. This is as it should be. The idea of a Folksonomy, a.k.a. folk taxonomy, as originated by Thomas Vanderwal centers around the social aspect — real people, real folk, coming up with language that means something to them to describe content that matters to them with ideas that matter to them. Meaning.

I could go on about this for a long time, but today I need to focus on a particular aspect of this dynamic — a shift from folk+taxonomy to folk+ontology. Folkology? Folk ontology? Folktology? A little bit of digging leads me to folktology (non-scholarly) or tagontology (scholarly) as preferred terms for this, both of which are used roughly the same amount.

In social media, one of the greatest strengths has been the power to create community where none existed before, to connect and empower those who may otherwise be isolated. The most prominent examples of this in healthcare have been the emerging communities around chronic conditions (such as diabetes), marginalized communities (such as facial difference and transgendered), and conditions that create isolation as part of the lifestyle or treatment of the condition (such as mobility disorders, many types of cancer, and any condition expected to be fatal).

Taking cancers as an example, there is the immediate problem of the ambiguity of language. In the image at the head of this post, the hashtag #cancer is shown to be most often associated with the Zodiac, not with healthcare. This makes that term itself less useful for healthcare uses.

Symplur Healthcare Hashtag Project 07082013
Symplur: The Healthcare Hashtag Project: http://www.symplur.com/healthcare-hashtags/

In the Symplur Healthcare Hashtag Project, a crowdsourced collection of hashtags in health, there are over 2500 hashtags total, with over 100 (n=133 07/08/2013) related to cancer. These range from disease tags, to events, to scheduled chats, and more. When people enter a new tag, they cannot do so anonymously, and the tags are reviewed before being added to the database. The tag donor is also asked to define the tag category at time of submission. Non-event tags must be able to show that they are used by multiple people. All of this makes the quality of the collection superior to most hashtag databases on the web. (I often wish there was something similar for science hashtags, or information technology hashtags, etc. I also often wish that the project content was routinely archived for posterity through a neutral organization, such as a library, but that is another conversation to have.)

The problem? Not one of those 133 hashtags on cancer is the hashtag #cancer. Of course, it would be really messy to try to separate the zodiac hashtags from the health hashtags, so I can understand why it has been avoided. However, this problem of the commonly used hashtag being missing from the database occurs fairly regularly. It is a not unexpected problem with crowdsourced information collections. Here’s another example. According to Symplur, the preferred hashtag for ovarian cancer is #ovariancancer. If you actually prowl around Twitter, there is an enormous variety of tags used, with the most common being #ovca. The #ovca content is not currently being captured, tracked, or archived in the project database. I just this morning submitted the #ovca tag when I noticed it was lacking. Hopefully, it may be active by the time this post goes live, but the content in it would be sparse and would lack history.

Here are the top, ie. most common, cancer hashtags, according to Symplur.

Cancer:
#BCSM; #BladderCancer; #BowelCancer; #BrainCancer; #BreastCancer; #CancerChat; #CancerFreeMe; #CancerSurvivors; #CervicalCancer; #Chemo; #ChildhoodCancer; #ColonCancer; #Leukemia; #LiverCancer; #LungCancer; #Lyphoma; #Melanoma; #Mesothelioma; #OralCancer; #OvarianCancer; #PancreaticCancer; #PediatricCancer; #ProstateCancer; #SkinCancer; #TesticularCancer; #XMRV
Symplur: The Healthcare Hashtag Project: http://www.symplur.com/healthcare-hashtags/diseases/

You’ll notice a wide variety of types of tags, with a general approach tending toward long tags that include the full words. In actual practice on Twitter, this is the reverse of standard practice, in which tags are kept short to minimize the number of characters used. Many of these tags, like #OvarianCancer, have shorter alternatives that are also used heavily (ie. #ovca). For breast cancer, both forms appear in the Symplur list: #BreastCancer and #BCSM. #BrCa, however, was missing, just like #OvCa. I submitted it, also.

You see the problem? Problems, actually. Part of it is discovery of the terms used, part of it is the actual terms used, and part of it is the community working to ‘manage’ creation, use, and adoption of the terms. Enter @SubatomicDoc, a.k.a. Dr. Matthew Katz. Matthew is a radiation oncologist who has been active in a couple different Twitter cancer communities, most notably #BCSM (which he adopted) and #LCSM (which he initiated). #BCSM stands for breast cancer social media, and #LCSM stands for lung cancer social media. The process of coming up with a better hashtag for lung cancer, gathering a community around it, and developing traction and adoption, got him thinking. What about other cancers?

Matthew sent me a direct message last week about this. He’d been thinking, and had created a rough draft of what he is calling a folksonomy, but which is really more of an ontology, uh, folktology or tag-ontology. We went back and forth several times, thinking about metadata design, automated sorting in computers, common usage, structuring subconcepts, distinguishing proposed tags from currently used tags in other domains, and various other ideas of how to best structure these in a way that would be useful, practical, and true to the concepts and communities. Matthew released the initial draft at the ASCO site last week, with a substantial model integrating proposed and existing Twitter hashtags around cancer experiences and communities.

Matthew S. Katz, MD. Hashtag Folksonomy for Cancer Communities on Twitter. ASCO Connection: 03 Jul 2013 9:08 AM http://connection.asco.org/Commentary/Article/ID/3590/Hashtag-Folksonomy-for-Cancer-Communities-on-Twitter.aspx

Since then there has been a lot of reaction, with people asking for MORE. Frankly, that is not a reaction I think either of us expected. There are refinements and extensions evolving from the communities. It is becoming a richer and broader conversation. I’d like to see more medical librarians engage with this. I am no metadata specialist, and would love to see someone get interested who is more expert than I am with metadata.

One of the extensions that was proposed through Twitter conversations around this is the idea of secondary tags to connect common cancer issues with specific cancer communities. I’d roughed out a list of some of those issues for my book chapter for online cancer resources and search strategies, back in the MLA Guide.

CAM, biopsy, staging, caregiving, home care, chemotherapy, cancer medications, side effects, clinical trials, fatigue, new diagnosis, nutrition, diet, pain, prevention, lifestyle, second opinions, sexuality, survival, and talking about cancer to different audiences.
MLA Guide: Free Samples: Sample Chapters: Volume Two: Diseases and Disorders: Part IV: Cancers, by P. F. Anderson http://www-personal.umich.edu/~pfa/mlaguide/free/cancers.html#issues

One of the ideas Matthew is talking about is how to come up with a strategy for creating new hashtags that would open this up to others, what are the criteria or best practices for creating new hashtags. I did some thinking on this for my Enriching Scholarship workshop on Twitter Hashtags for Science.

Twitter Hashtags

Twitter hashtags mindmap: http://www.mindmeister.com/270101756/twitter-hashtags-by-pf-anderson

I should make a separate post about the model I developed for thinking through best practices of creating new hashtags, but I’ll just put a placeholder here. The acronym is LUDDITE, which stands for:

Length
Unique
Distinct
Decipherable
Indelible
Time
Enterprise

LUDDITE Model for Hashtag Creation

These overlap in many key points with Matthew’s criteria in his ASCO post, however he includes critical points of working specifically for cancer and healthcare communities.

“It is disease-based;
It helps patients with similar diagnoses learn and share rather than be isolated by the cancer experience;
It is designed to make information more easily accessible;
It is unique enough to be distinguished from other topics online;
Brevity is key to allow more content/conversation, especially with Twitter.”

So, that’s as far as we’ve gotten, but we’d love YOU to join the conversation and thoughts around this. Please put comments about the hashtag model at Matthew’s post, and comments about the process here. Thank you so much!


UPDATE July 15, 2013.

An important followup post from Matthew (@subatomicdoc) is now up.

Cancer Hashtags: High Time or Half-Baked?
Matthew S. Katz, MD
15 Jul 2013 10:09 AM http://connection.asco.org/Commentary/Article/ID/3599/Cancer-Hashtags-High-Time-or-Half-Baked.aspx

Science as Conversation, Part 1: “Is Pubmed Passé?”

Today at “lunch” I listened to a webcast presentation by a couple of my colleagues & peers here at the University of Michigan Health Sciences Libraries – Marisa Conte & Jean Song. They were presenting research data that is part of a project to develop improvements to the PubMed searching interface. The specific project under discussion today was MiSearch.
MiSearch: http://misearch.ncibi.org
MiSearch
I occasionally sent brief tweets to Twitter about the interesting data or concepts being presented. As a topic for another conversation, somehow I turned on LiveTweet by accident, so the tweets were captured as a session.
LiveTwitter: http://livetwitting.com/session/145
What was really interesting was the dialog that happened around the tweets. Specifically one comment in particular from Chris Seper.
Is PubMed Passé?

  • “Interesting. Is PubMed becoming passé? I just yanked the PubMed widget off Cleveland.com/medical. Replaces with ScienceRoll.”

Wow! You could have knocked me over with a feather right about then. As a medical librarian, and especially as someone heavily engaged with evidence-based healthcare and systematic reviews, Medline is a BIG part of my life! PubMed, Ovid, Silverplatter, GratefulMed, Dialog, Index Medicus, Index to Dental Literature … the list of tools I’ve used for searching the medical literature goes back through decades of my life, and the tools themselves (as well as the literature) go back around 150 years. I was “raised” (as a medical librarian) on Medline as the mother’s milk of authoritative medicine and healthcare.
I was immediately and urgently curious what it was about ScienceRoll search that inspired Chris to make this change. So I popped over to Chris’ page and checked it out. I noticed two big differences right away — (1) what information sources are being searched, and (2) how the results are being displayed.
SOURCES
Science Roll Example - Sources
RESULTS
Science Roll Example - Results
So what is so different? Well, when you use ScienceRoll’s search you do still get results from PubMed mixed in. That is also true of Google Scholar. ScienceRoll, though, is a bit like a blogroll — “who are your favorites?” ScienceRoll searches the crème de la crème of the medical web — World Health Organization, Centers for Disease Control, National Institutes of Health, Health On the Net, and many more. Then it gives you what it finds (a little, not too much, some consumer, some clinical) with more suggestions and ideas for refining your search. For a site targeting the general public I can definitely see why Chris felt this was a better choice than dumping John Q Public directly into the heart of the clinical dialog.