Tag Archives: hcsm

Social Media For Exclusion

First posted (with a few small editorial changes) at the Mayo Clinic Center for Social Media Blog: http://socialmedia.mayoclinic.org/discussion/social-media-for-exclusion/


Pic of the day - Sweetness

We praise the power of social media to bring people together, to engage people around topics and events of shared interest, to include. Too often we don’t stop to think that every new tool with new ways to include people is probably excluding someone else in a new way.

The accessibility of social media is rarely discussed outside of communities of persons with disabilities. When it is discussed, the people who most need to hear it (us?) may not be in the audience. When we aren’t, the work we do to try to include and engage may actually serve to accomplish the opposite.

VIDEO

The obvious example, one you probably already know about, is when you share video or use streaming tools, but lack captions. It isn’t always possible to pay for live captioning, as much as we might want to, but there are tips and tricks to get around that with low-cost options. In Second Life, the Virtual Ability community has, as a standard of practice, a roster of volunteers who offer to type into live chat a synopsis of what the speaker is saying, and who describe images on the slides for the blind. Because some conversations there are held in typed chat, they also have someone sighted volunteer to read aloud the typed chat, identifying the speakers. Why couldn’t we working in healthcare media implement something like this for streamed events?

TWITTER

Did you know about Easy Chirp? It’s a Twitter browser designed for people who are blind or visually impaired, but it can be useful for others as well. Just as with curb cuts, tools to make social media more accessible for marginalized and excluded audiences can make life easier for people who are nominally able-bodied. Accessible browsers can require less bandwidth and be more robust when you are in that crowded meeting room with a hundred people sharing wireless, just as an example.

Do you tweet using one of those marvelous fancy tools for the pros that allow you to track multiple channels at the same time? Often those will place the relevant hashtag for the channel at the beginning of each tweet. I wager you weren’t aware that this makes life harder for those with visual or cognitive challenges, because it makes it harder for them to sort out the important part of the message. Recommended practice is to place hashtags at the END of your tweets.

Also, for those hashtags which smoosh together parts of different words? Screenreaders struggle to figure out how to read those when they are all lower case or all upper case. I have a bad habit of not mixing the capitalization because it is faster when I am typing, but for screenreader, there is a world of difference between #mayoclinic and #MayoClinic. Now that I know, I am trying to be better about it, because I was excluding people when I meant to include them.

MORE

These are just a few examples, low-hanging fruit. There is a lot more to know. Luckily, there is an upcoming free webinar on social media accessibility from the ADA National Network, if you are interested in learning more. If you are here on campus, we are meeting in the Hatcher Gallery Lab to watch this together.

October 20, 2015
2:00-3:30 p.m.
Social Media and Accessibility

Since Katrina, Part One: #SinceKatrina, #Katrina10, #Katrina10Years

Katrina Memorial

It’s been 10 years since Hurricane Katrina. Hurricane Katrina changed my life, in many ways. I want to talk about health information challenges then and now, how the information landscape has changed, but that will come in Part Two. For today’s post, I want to honor many of the other voices and conversations around this anniversary. The hashtags collecting these are:

#Katrina
#Katrina10
#Katrina10Years
#SinceKatrina

People are telling the stories of what happened then, remembering, grieving, sharing anger and hurt that has barely faded. Others are analyzing again what went wrong. A few are celebrating survival and growth. Many are looking to the lessons learned and what must happen to prevent this happening again. There are many worthy stories, opinions, ideas, and ideals here. I’ve selected just a few.

STORYTELLING: THEN & NOW | HEALTH & MEDICAL | HISTORY, MUSEUMS, EDUCATION, & LIBRARIES | RESILIENCE, LOSSES, & LESSONS LEARNED | PROGRESS & NEW TOOLS

STORYTELLING: THEN & NOW

HEALTH & MEDICAL

HISTORY, MUSEUMS, EDUCATION, & LIBRARIES

RESILIENCE, LOSSES, & LESSONS LEARNED

PROGRESS & NEW TOOLS

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”

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/

Concerns & Clarification on the FDA Guidelines for Social Media (#FDAsm)

FDASM: FDA on Social Media

Last Tuesday afternoon, there was a Twitter chat on the new FDA guidance on social media that was hosted by the medical librarians group (#MedLibs), but which engaged an audience that also included healthcare professionals, lawyers, and communication specialists. It was a very interesting chat that touched on concerns, assumptions, misunderstandings, clarifications, and resources. You will find many of these excerpted from the full conversation and highlighted below. First, though, here is a high level summary.

Concerns included the potentail for a “chilling effect” that might impact on education, innovation, professional and patient public communications, research and clinical trial recruitment; responsibility (who is responsible for what/when/where/how with respect to health social media communications); effectiveness of social media controls for their intended purposes and the costs/benefit assessments; the role of identity, honesty, and transparency in health social media communication; and whether the guidelines will promote inclusion or foster exclusion of relevant voices in useful conversations.

Clarifications sought: plain language summaries of the guidelines; description of the potential and expected impacts on various communities of practice, including health education and patients; the relationship and responsibilities of employers and employees in their social media identity management and communications; and the issue off-label use conversations outside of pharma entities.

Clarifications which appeared during the chat (but which are note from the FDA, and therefore not the authoritative word with respect to these issues): who is covered by the guidance; community and individual efforts to create plain language distillations of the guidance; context; and a reminder that freedom of speech does not equal freedom of consequences for that speech.

For Medical Librarians: role for medical librarians in supporting and demonstrating best practices in Twitter chats; role for medical librarians in supporting education around the FDA’s guidance for their institutions as well as for patients and the public; and a caution about medical librarians being potentially excluded from social media as part institutional image controls as well as potentially as an impact of the guidance.

Takeaways: how to format an FDA-style tweet; avoid creating branded accounts for free conversation; encourage individuals to create personal accounts that are not branded and are distinct from the brand; consider correction of health misinformation as an opportunity; avoid perception of “practicing medicine” on social media, but discussions are alright; consider commenting on the FDA draft guidelines before September 17.

In addition, the conversation included discussion of best practices for identifying tweets as representing personal opinion, as well as a rich collection of resources.

CONCERNS

CLARIFICATION NEEDED

CLARIFICATION RECEIVED

FOR MEDICAL LIBRARIANS

TAKEAWAYS

FURTHER QUESTIONS

RESOURCES

FDA On Social Media: Time to Pay Attention, Take Two

FDASM Campus Forum Feb 16SL: Virtual Ability: Introduction to the FDASM
FDASM Transcripts Wordle23andMe, reduced

Remember five or so years ago when we put together a campus event about the FDA call for input on social media guidance? I blogged about it a lot. I’m sure many of you are already aware of the new FDA Social Media draft guidelines that were, at long last, released last month.

Recently I heard an interview with David Harlow about the new draft guidelines. I was very surprised when I heard him say that the FDA sent a warning letter to a company for clicking “like” on a patient’s Facebook post. That seemed a bit over the top to me, although I confess I haven’t yet found the original warning letter. I had been inclined to just trust that after thinking about this so long, the FDA would come out with something helpful, but it sounds like that isn’t what happened. Responses from the drug companies seem to be along the lines of just avoiding the whole problem, if the FDA is going to be so challenging and confrontational. Responses from folk working actively in HCSM are that the FDA is not getting the point or purpose of social media engagement, and that the guidelines are sufficiently restrictive as to make it impossible to adhere to the specifications.

I know that I need to know more about this, and I believe that readers of this blog do also. The period for public comment is over in September, so there is very little time to respond. My fault — I should have paid closer attention to this sooner.

BACKGROUND

For context, I’d like to first remind people of the comments we filed with the FDA during the original call for comments. Where it sounds like things have broken down is with respect to our third point (#3): “the potential to be perceived as interfering with free speech of the public or creating an undue and insupportable burden for industry and the healthcare communities,” and to the concerns about use of social media within an educational framework.


FDA-2009-N-0441 Docket Comments, University of Michigan Public Forum: http://www.slideshare.net/umhealthscienceslibraries/fda2009n0441-docket-comments-university-of-michigan-public-forum

Here are my slides from five years ago, just to provide context for the background of the conversation.


FDA Social Media Guidelines – Introduction http://www.slideshare.net/umhealthscienceslibraries/fda-social-media-guidelines-introduction

Now, here are some links about where things stand today, plus the presentation by David Harlow, which I encourage you to watch.

DAVID HARLOW


FDA Social Media Changes that May Affect Healthcare https://www.youtube.com/watch?v=aEutmz0kFsM

#FDAsm – FDA Releases Draft Social Media Guidance Five Years After Public Hearing http://www.healthblawg.com/2014/06/fdasm-fda-releases-draft-social-media-guidance-five-years-after-public-hearing.html

FDA Social Media Guidance – Hangout on Air http://www.healthblawg.com/2014/07/fda-social-media-guidance-hangout-on-air.html

PUBLIC HEARINGS

2009: Public Hearing on Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools: http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm184250.htm

July 10, 2014: Social Media Guidance Webinar – July 10, 2014: http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm403810.htm

FDA ANNOUNCEMENT

FDA Issues Draft Guidances for Industry on Social Media and Internet Communications About Medical Products: Designed with Patients in Mind http://blogs.fda.gov/fdavoice/index.php/2014/06/fda-issues-draft-guidances-for-industry-on-social-media-and-internet-communications-about-medical-products-designed-with-patients-in-mind/

Draft Guidance for Industry on Internet/Social Media Platforms: Correcting Independent Third-Party Misinformation About Prescription Drugs and Medical Devices; Availability http://www.gpo.gov/fdsys/pkg/FR-2014-06-18/html/2014-14221.htm

NOTE: This is where to file comments >>
[Docket No. FDA-2014-D-0447] Draft Guidance for Industry on Internet/Social Media Platforms: Correcting Independent Third-Party Misinformation About Prescription Drugs and Medical Devices; Availability https://www.federalregister.gov/articles/2014/06/18/2014-14221/draft-guidance-for-industry-on-internetsocial-media-platforms-correcting-independent-third-party

DRAFT GUIDELINES

Guidance for Industry: Internet/Social Media Platforms with Character Space Limitations— Presenting Risk and Benefit Information for Prescription Drugs and Medical Devices (June 2014) http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM401087.pdf

Guidance for Industry : Internet/Social Media Platforms: Correcting Independent Third-Party Misinformation About Prescription Drugs and Medical Devices
http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM401079.pdf

Guidance for Industry: Fulfilling Regulatory Requirements for Postmarketing Submissions of Interactive Promotional Media for Prescription Human and Animal Drugs and Biologics (Jan 2014) http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM381352.pdf

On Making Health – Hashtags of the Week (HOTW): (Week of June 24, 2014)

White House Tweet on Maker Faire

#MakeHealth, #MakerNurse, #MedLibs, and #NationOfMakers lead off this week’s highlighted hashtags. What they all have in common is connections between maker culture and making health. What is maker culture? Funny you should ask.


White House Maker Faire
The White House had its first ever Maker Faire last week, June 18th. Their hashtag was #NationOfMakers. While the White House didn’t focus solely on health, health was well represented in their audience and presenters.

#NationOfMakers #MakeHealth


We Make Health

University of Michigan is really active in this space, enough so that the topic could be a whole series of posts on its own. Let’s just start with the fact that University of Michigan is sponsoring our own maker festival in August explicitly focused on connecting health, research, clinical care, patients, and maker culture. Our hashtag for this event and going on is #makehealth.


MakerNurse

Work on that event has lead to a lot of questions and thoughts from other medical librarians, which led to a Twitter chat about #makehealth and #NationOfMakers and all that under the hashtag #medlibs and joined by the folks from #MakerNurse!

“What is the Maker Movement, and how does it connect to participatory medicine and personalized healthcare? How is this changing healthcare? How is this changing libraries? How does this connect to the roots of health and healthcare? What are roles for libraries in ‘makering’?”


What will you be making? Help us make health!


First posted at THL Blog: http://thlibrary.wordpress.com/2014/06/23/on-making-health-hashtags-of-the-week-hotw-week-of-june-24-2014/

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.


First posted at THL Blog: http://thlibrary.wordpress.com/2014/02/17/what-if-your-patient-is-a-self-tracker-hashtags-of-the-week-hotw-week-of-february-17-2014/

#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.


First posted at the THL Blog: http://thlibrary.wordpress.com/2014/01/20/kellergate-hashtags-of-the-week-hotw-week-of-january-20-2014/

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/