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.

What if your patient is a self-tracker? — Hashtags of the Week (HOTW): (Week of February 17, 2014)

Quantified Self

There were many Twitter tags and events last week that I really wanted to profile (and I hope there is time in the future to come back to some of the others!). The reason this topic won out over the others is because I participated in TWO events that focused on this question! One was the University of Michigan Pediatric Grand Rounds (#umpedsgr), with guest speaker Alex Djuricich, MD.

You can see a Storify of the complete Twitter stream from the talk here: Emerging Technology in Medicine: Friend or Foe?.

Alex launched his presentation with a case study of a young man with high blood pressure who comes to the clinic with his iPhone and app, wanting to share his data on his blood pressure trends.

Alex also got most of the audience livetweeting, which turns out to be what he’s used to at Indiana University, where they’ve livetweeted grand rounds for the past two years at #iupedsgrrounds.

He started with that case, branched out to include some discussion of types of tech that track or capture data about patients, and then swung back to the original case. Here are a few tweets from that talk.

I was absolutely blown away when the same idea came up last night at the weekly #HCSM chat.

This conversation was incredibly powerful. Clinicians and patients going back and forth, examples of data and tools, best practices, and more. These are just a very few of the tweets, with more archived in Symplur.

The conversation continued far past these thoughts, including challenges integrating data into electronic health records, balance between access to data points and ease of use for clinicians, training issues, how to integrate n=1 “trials” with population-based data, and much more. Truly a chat worth reading through in its entirely.

#Kellergate — Hashtags of the Week (HOTW): (Week of January 20, 2014)

The Beginning of Kellergate

If you were busy last week, you might have missed what has become known as “Kellergate.” It erupted with an article in the Guardian by Emma Gilbey Keller, which was shortly followed by a companion piece in the New York Times by her husband, Bill Keller. Both pieces were about about famed breast cancer blogger Lisa Adams.

Emma tweeted about her post right away, and Lisa replied quickly. As of today, there are 40 replies to that initial tweet, and it is enlightening to click through and read through the initial dialog.

Keller, Emma G. Forget funeral selfies. What are the ethics of tweeting a terminal illness? The Guardian Wednesday 8 January 2014 13.40 EST. Original link: http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics Archive link: https://web.archive.org/web/20140109033020/http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics

Bill Keller also tweeted out when he published his piece on Lisa Adams, a tweet which has 39 replies at the time of writing this, again with many upset responses.

Keller, Bill. Heroic Measures. Op-Ed. New York Times JAN. 12, 2014. http://www.nytimes.com/2014/01/13/opinion/keller-heroic-measures.html

What both Kellers seemed to not understand is the role of patient communities in social media, and that the breast cancer community is one of the largest, most active, and most passionate of Twitter patient communities. Both posts were perceived as an attack on Lisa (justifiably), and the community reacted. The authors, at least Emma, seemed genuinely surprised.

Now, you know something is really controversial when ‘comedians’ start to pick up on it. And then when people start to make parodies of other replies!

I’ve just come from a phenomenal presentation given by Phyllis Meadows for Martin Luther King Day celebrations here at the University of Michigan. Much of what she was saying reverberated in my head, echoing aspects of what I’ve been hearing in the many conversations about Kellergate. For starters, Phyllis Meadows (a researcher on public health in communities) said earlier today, “Sometimes our intent and our impact are very different.” Clearly, this is the case with Kellergate. I’d like to frame some of this post in the context of Dr. Meadows’ MLK Day presentation. [Please note, I am working from my notes of the presentation, not a transcription or recording, so may have inaccuracies in my quotations.]

The extremely abbreviated background on Kellergate is that two journalists wrote public pieces commenting on intimate details of the life of a cancer patient (Lisa) who has chosen to share much of her life online. The first journalist (Emma) has since admitted that the article included excerpts from content that was shared with her through private modes (direct messages and email) without either notifying Lisa nor requesting permission to share them. The second journalist (Bill) had several errors of fact in his piece resulting from inadequate research, including such easily discoverable bits as the number of Lisa’s children, which is stated on her homepage. The first was a clear breach of professional ethics, and the second creates questions about professional practice, but both have actually become almost a red herring in the larger context of the conversation, which focuses on community, context, communication, caring, compassion, and comprehension (ie. listening).

Dr. Meadows emphasized the role of elitism in creating health disparities and creating barriers to finding solutions relevant to the community.

“Who speaks.
Who listens.
Who is expected to listen.
Who is responsible.
Who is blamed.
Who makes decisions.”

Clearly, both of the journalists and their parent publications were expecting to speak, and be listened to, but were not expecting to have so very many people talk back. Commentary on the posts includes both those who criticize the Kellers and those who support them …

… , although the former seem to FAR outweigh the latter.

Kellergate Responses

The phrase / hashtag #Kellergate emerged after the second essay was published.

At this point in time, there are literally HUNDREDS of responses to Kellergate, both within the official media as well as in the blogosphere, and several thousands more if you count tweets. Phyllis Meadows, in the question and answer portion of her MLK Day talk, commented, “Most people don’t know how to talk to each other. Discourse begins by seeking clarity, asking WHY you ask that question, rather than answering based on assumptions from my mental model.”

The Keller pieces both struck a raw nerve. I don’t know if the New York Times or the Guardian are interested in healing the breach that this has created between them and the large breast cancer social media community, but if they are, perhaps they might want to create an open honest space for continued dialog around this topic. I am delighted to see the POWER of the #BCSM community, and delighted that the world can now witness that power, but I am hoping that the conversation doesn’t detour into blaming on both sides and a repetitive recreation of the injury, but rather serves as a springboard for healing. Let the journalists learn more about our communities and how to communicate with them. Let the questions they were trying to raise become a healthy honest part of the social media communities and their conversations.

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