Category Archives: Science2.0/Health2.0

Accessibility through Social Media for Libraries 101

Just a quick collection of resources I find helpful in using social media to create better and broader access (and accessibility) for library events and more.

ACCESSIBILITY

There are many ways of interpreting the word “access.” The ones I encounter most often are 1) access (as in this thing exists somewhere I can find it or get hands on it, which I think of as ‘discoverability’) and accessibility (as in I can use this, even if I’m a person with a disability, whether my functional difference is visible or invisible).

Golden rules of social media accessibility: http://www.danya.com/files/sma_poster.pdf

Accessibility Hub: Social Media Accessibility – Facebook, Twitter, and YouTube: http://www.queensu.ca/accessibility/how-info/social-media-accessibility

Social Media for People with a Disability: https://mediaaccess.org.au/web/social-media-for-people-with-a-disability

SSB Bart Group: Accessibility in Social Media: http://www.ssbbartgroup.com/blog/accessible-social-media/

ePolicyWorks: 5 Things: https://www.epolicyworks.org/epw/wp-content/uploads/2013/11/ePolicyWorks_SocialMediaAccessibilityTips.pdf

District of Columbia: Office of Disability Rights: Technical Assistance Manual: Section 508: Website and Social Media Accessibility: https://odr.dc.gov/sites/default/files/dc/sites/odr/publication/attachments/Web%20and%20Social%20Media%20AccessibilityTechnical%20Assistance%20Manual.docx

Accessibility U: Accessible Social Media: http://accessibility.umn.edu/tutorials/accessible-social-media

Global Disability Rights Now: Creating Accessible Social Media Campaigns: http://www.globaldisabilityrightsnow.org/sites/default/files/related-files/243/Social%20media%20and%20accessibility.pdf
[comment: I find it super ironic that a site on disability rights is providing accessibility content as a PDF.]

LIBRARY EXAMPLES & ARTICLES

Use of social media by the library, current practices and future opportunities: A white paper from Taylor & Francis: http://www.tandf.co.uk/journals/access/white-paper-social-media.pdf

University of Virginia: Library: Legal Information about Media Accessibility: http://www.library.virginia.edu/services/accessibility-services/media-accessibility-resources/legal-information-about-media-accessibility/

Social Media and the Science Library: How It Really Works: http://www.rsc.org/globalassets/14-campaigns/m/lc/lc16026/royal-society-of-chemistry-social-media-ebook.pdf

#FridayReads: Library and campus engagement through social media: https://link.highedweb.org/2017/02/fridayreads-library-and-campus-engagement-through-social-media/

TOOLS

One of the benefits of social media is that it makes content more readily discoverable by a broader audience in time and space. One of the drawbacks is that many social media platforms aren’t easy to use by people with various disabilities. This is just a tiny sampling of some of the information or tools that might help with some parts of that, although not others.

Facebook: https://www.facebook.com/
– Facebook Accessibility: https://www.facebook.com/accessibility/

Twitter: https://twitter.com/
– Easy Chirp: http://www.easychirp.com/

Lanyrd: http://lanyrd.com/

Storify: https://storify.com/

SOCIAL MEDIA POLICIES

If you don’t have a social media policy, you will probably live to regret it. Here are some examples.

Why Have a Social Media Policy for Your University Library? http://www.proquest.com/blog/2013/why-have-a-social-media-policy-for-your-university-library.html

Creating a Social Media Policy: What We Did, What We Learned: http://www.infotoday.com/mls/mar13/Breed–Creating-a-Social-Media-Policy.shtml

Example social media policies from libraries

Cleveland Public Library: https://cpl.org/thelibrary/usingthelibrary/policy-on-the-use-of-cpls-social-media-sites/
Monroe County Public Library: https://mcpl.info/geninfo/social-media-policy
Plum Creek Library: http://www.plumcreeklibrary.org/jackson/Docs/social%20media%20policy.pdf
TAZEWELL COUNTY PUBLIC LIBRARY: https://tcplweb.org/wp-content/uploads/sites/22/2015/03/TCPL-Social-Media-Policy.pdf
Thomas Crane Library: http://thomascranelibrary.org/sites/default/files/Social%20Media%20Policy.pdf
UNC University Library: http://blogs.lib.unc.edu/news/index.php/social-media-policy-for-library-employees/
Washington State University Libraries: http://www.wsulibs.wsu.edu/policies/social-media

GUIDELINES ETC.

Where to start first

Federal Social Media Accessibility Toolkit https://hackpad.com/Federal-Social-Media-Accessibility-Toolkit-xWKKBxzGubh

Federal Social Media Accessibility Toolkit Hackpad: Improving the Accessibility of Social Media for Public Service https://www.digitalgov.gov/resources/federal-social-media-accessibility-toolkit-hackpad/

More resources

Section 508: Create Accessible Video and Social Media https://www.section508.gov/content/build/create-accessible-video-social

Media Access Australia: Social Media for People with a Disability: https://mediaaccess.org.au/web/social-media-for-people-with-a-disability

Improving the Accessibility of Social Media in Government: https://www.digitalgov.gov/resources/improving-the-accessibility-of-social-media-in-government/

Social Media and Accessibility: Resources to Know:
https://www.digitalgov.gov/2015/01/02/social-media-and-accessibility-resources-to-know/

Your Opinion Matters

Legendary Phoenix: Your Opinion

I find myself disturbed by today’s TeeFury special, by Legendary Phoenix. The image shows Rick, a stereotypical scientist in a white lab coat with messy hair, a unibrow, eyes ripe with ennui, bags under his eyes, a pointy nose, and a glum descending (and condescending) mouth. The scientist is saying (in a word bubble), “I’m sorry, but your opinion means very little to me.”

TeeFury: Legendary Phoenix: Your Opinion

I expect some science geeks to jump up and down with glee and say, “You see? It’s not about OPINIONS! Ha! Gotcha!” However, one of the greatest challenges in science communication and science literacy is this perception that scientists are unpleasant, self-centered, passionless, people unwilling to listen or hold a civil conversation within the public sphere. “Your opinion means very little to me” could be “because I really prefer evidence over opinion” or it could be “because I’m socially inept and don’t care what people think” or it could be “because I bloody well don’t think you have anything to offer, and so I’m not listening” Or all of the above (and more).

And however you read it, these imply scientists have nothing to learn from experience, no compassion, no courtesy, no duty to educate or inform or improve science literacy among the broader populace, no understanding of intellectual sharing or community building, etcetera. Of course, real life is actually the opposite, on all counts, but this is the common perception.

This common perception has resulted in dangerous and ill informed policy decisions, reduced funding for research, strategically ill-applied research funding, poor translation of science findings into practice, and ultimately, unnecessary deaths and misery among those (all of us) who would benefit from the implementation of scientific discoveries.

“Scientific literacy is an urgent and important issue. Why should we care? The answer is simple: Our way of life and our survival are at stake.” – G. Wayne Clough, Secretary Smithsonian Institution

Your opinion matters

What I want to say is, “Your opinion matters. It matters because I care about how you got to your opinion, and I can learn from that. It matters because you might have information or resources or data that informs that opinion which aren’t available to me. It matters because I might have information or resources or data that aren’t available to you, and which might help both of us. It matters because if we put together what you have and what I have and more, we might get a picture of the problem or solution that are closer to what we really need. It matters because what how you feel about your opinion and how I feel about my opinion give an emotional context that is important in telling stories and shaping policy. It matters because IT MATTERS. So, tell me what your opinion is, share your sources and stories, listen to mine, and let’s learn together.”

I’m not buying the t-shirt. Or maybe I should, so that I can have this conversation over and over again.

Insights into the Lived Healthcare Experiences of the Transgendered (#TransHealthFail)

#TransHealthFail

#TransHealthFail

Several years ago, I was in an elevator with a then-local clinician (no longer here) who was complaining to me about how unhappy he was with his clinical practice. He had bought into the practice from another clinician who was retiring, and it wasn’t until he moved here and began actually working there that he discovered half of his patients were transgendered. I still remember how his face twisted up into a knot and his beard waggled as he snarled with disgust about being forced to treat “THOSE people.” He told me, “You don’t know. THEY are EVERYWHERE around here! How could I expect that?” I got out of the elevator as soon as I could. And then I started trying to plan a trans education event for our library. It took some years to be able to make it happen.

I was so excited when I heard about the Trans Health Fail hashtag during the Stanford Medicine X conference. I’ve been wanting to blog about it for a couple months, and finally it is happening. The post is divided into four sections: reports of experiences (mostly with insurance, staff, and clinicians); longer personal testimonials; healthcare reactions; and popular media. There is even a section where trans people have given kudos to the absence of failure, when folk have gotten it right. Most important take-away lessons to learn? Names are important (not just for people who are transgendered, but perhaps especially for them). Privacy is important. Respect is important. Information is important. Access to care is life-saving. Another big part of the conversation centers around the high mortality of transgendered persons, both from violence, and stigma. The basic assumption of what SHOULD be happening in healthcare gets back to “First do no harm.” A lot of the perceived harms which are described could be changed fairly easily just by better education of healthcare professionals of all sorts, and the office and support staff in healthcare facilities. Some of them make complete sense to professionals working inside the healthcare system, but obviously did not to the person on the other side. If you haven’t yet noticed this conversation, it’s worth taking a few minutes to explore. It could save lives. And if you are a healthcare provider who actually can and will treat transgender persons, please be aware of the Provider Self-Input Form for the Trans & Queer Referral Aggregator Database from RAD Remedy

LIVED EXPERIENCES

LIVED EXPERIENCES: Access to Care

!! https://twitter.com/TGGuide/status/629892052914991104

LIVED EXPERIENCES: Insurance

LIVED EXPERIENCES: Healthcare Environments & Systems

LIVED EXPERIENCES: Supporting Roles

LIVED EXPERIENCES: Clinicians

!! https://twitter.com/anaphylaxus/status/639815813495701504

LIVED EXPERIENCES: Children

LIVED EXPERIENCES: Done Right

TESTIMONIES

HEALTHCARE RESPONSE

MEDIA ATTENTION

Atlantic

BitchMedia ??

Buzzfeed

Cosmopolitan

DailyBeast

DailyDot

Distractify

FacesOfHealthCare

Feministing

Fusion

HuffPostGay

HuffPost

Indiana

MarySue

Mashable

Metronews Canada

Mother Jones

NewNowNext

Patient Opinion

Vice

#MakeHealth RETURNS!

Make Health Fest 2015

We are gearing up for this year’s repeat of the fantastic Make Health event, a maker event themed around healthcare.

Make Health Fest: http://makehealth.us/
(Pssst! Check out #MakeHealth on Twitter)

This year (THIS WEEKEND!!), MakeHealth is a two-day event, with presentations split onto two different days, and booths and demos on Sunday. Check the schedule carefully to not miss something you want to see.

FESTIVAL: Make Health Fest: 11 am – 6 pm, Sunday, October 25th, 2015
SYMPOSIUM: The Nightscout Project, Patient-Driven Innovation, & the Maker Movement: 9:30 am – 12 pm, Monday, October 26th, 2015

This year we have been recruiting some awesome campus and community partners (and the list is still growing!). We are also seeking volunteers of all sorts (and you can volunteer to help at the website). We ESPECIALLY need people to do social media stuff, write up the event wherever you post, livetweet presentations and displays, take pics, help us make the event come alive for those who can’t get here. And if anyone is able and willing to livestream or Periscope, that is another thing we’d love to do (and get requests for) but which hasn’t happened yet. People who volunteer officially get cool swag, so it’s worth signing up as well as just doing it!

If you ARE a presenter, feel free to recruit one of your friends to videotape you and put it up online, but being sensitive to those in the audience who may be less thrilled about being on camera.

We are really excited about this year’s highlights and keynotes:

Susannah Fox was the health lead at the Pew Internet and American Life Project, and is now Chief Technology Officer of the U.S. Department of Health and Human Services (HHS). Whoa. Susannah’s ideas of what qualifies as technology tend toward the broad side. That broad definition makes it easier for her to be absolutely as excited about what makers and real people are doing as much so (if not more) than what professional geeks are doing.

We also have Jose Gomez-Marquez, Director, MIT Little Devices Lab, and Anna Young of Maker Nurse. More information forthcoming about presentations on the patient-led movement to overhaul life with diabetes (a.k.a. the NightScout Project), which you may have noticed under the hashtags #WeAreNotWaiting, #CGMinTheCloud, #DIYPS, #NightScout, #OpenAPS, and probably more.

It promises to be a fantastic event, and we would love your help and participation. If you want to take a look at just how fantastic it was last year, you can do that here.

We #MakeHealth Fest 2014: http://makehealth.us/2014

The WORST Thing About Depression is …

Pic of the day - Not a Happy Musical

There is a fantastic, passionate, profoundly honest, deeply wrenching effort going on RIGHT NOW to try to take the stigma out of depression. What I’m talking about is the movement gathering under the hashtag #TheWorstPartOfDepressionIs. People are telling their stories, and the stories of those they love, with and without names, but always with bald-faced honesty. They describe the ways in which expectations, interactions, judgments, sensations, and experiences serve to compound what is already a paralyzing destructive illness. Here are just a few of these amazing tweets.

* THE BLOGGESS

* EXPECTATIONS

* INTERACTIONS

* JUDGMENTS

* SENSATIONS

* EXPERIENCES

LAST BUT NOT LEAST

At The Movies: Tactile Art & Tech for Autism

David Chesney is Back. This Time With Sean Ahlquist (Art & Architecture) and Sile O’Modhrain (Music). The project being highlighted this time is designed to use a flexible stretch “coloring book” to provide a kind of engaging biofeedback to children with autism regarding the amount of pressure they are using. This would have been fantastic to have when my son was small.

David Chesney: “The research that I do here at the University of Michigan is at the intersection of technology and childhood disability.”


Tactile Art | MichEpedia | MconneX https://www.youtube.com/watch?v=uQU7ZhMvH2k

University researchers and students create device designed to aid in Autism therapy https://www.michigandaily.com/news/university-researchers-and-students-different-fields-study-create-device-designed-aid-autism-th

More videos about the project from Dr. Ahlquist.

Social Sensory Surfaces Research Project from Sean Ahlquist on Vimeo.

Social Sensory Surfaces Research Project https://vimeo.com/125392278

Stretch|PLAY from Sean Ahlquist on Vimeo.

Stretch|PLAY https://vimeo.com/125633678

Social Sensory Surfaces: http://taubmancollege.umich.edu/research/research-through-making/2015/social-sensory-surfaces

Related work from Dr. Chesney on his work with autism.


Software Engineering Class Hacks Autism https://www.youtube.com/watch?v=CUT-Chcffqc

Digital avatars help children with autism – w/video http://www.autismdailynewscast.com/digital-avatars-help-children-autism/21463/snapshot/

Hacking Autism and University of Michigan https://www.autismspeaks.org/blog/2012/05/01/hacking-autism-and-university-michigan

Video games help autistic students in classrooms http://usatoday30.usatoday.com/news/health/story/2012-05-31/video-games-autism-students/55319452/1

More interesting projects by Dr. Chesney & his students.


Untapped Resonance: David Chesney at TEDxUofM https://www.youtube.com/watch?v=GO9HSiUMylE


Engineering with Grace: https://www.youtube.com/watch?v=aDjYoyYfUQE
Engineering with Grace: Software class aims to help one teen communicate: http://ns.umich.edu/new/multimedia/slideshows/21712-engineering-with-grace-software-class-aims-to-help-one-teen-communicate
Computer Science with Soul: http://dme.engin.umich.edu/grace/


Provost’s Seminar on Teaching – Presenter David Chesney https://www.youtube.com/watch?v=FDSwN1MEfnY

White House Champions and the Dream of Personalized, Precision Medicine (#WHChamps)

White House Champions of Change - Precision Medicine #WHChamps

A couple weeks ago, I had just started a blogpost on the White House Precision Medicine Initiative, when I heard that within the HOUR there would be an update from the White House on this very topic, livestreamed! I scrambled, livetweeted, and this is no longer the post I had planned to write, but a rather different one, that has taken a good bit more time than what I had planned. The ‘update’ on the Precision Medicine Initiative turned out to be a White House Champions event. I had not previously heard of the White House Champions, but it turns out this is a wonderful series of events that have been going on through Obama’s Presidency honoring community innovators in a wide range of topics & issues where America has needed innovation:
AIDS/HIV,
campuses,
citizen science,
crowdfunding,
disaster preparedness,
domestic violence,
education (several of these events for different challenges),
food security,
LGBT,
libraries and museums,
NASA,
open government,
open science,
Parkinson’s disease,
public health and prevention,
science equality for women and persons with disabilities,
suicide prevention,
tech innovation and inclusion,
veterans (several of these events for different challenges),
youth homelessness,
youth violence,
and much, much, MUCH more! My mind is just ringing with all that I’ve missed, and all the wonderful creative innovators I don’t yet know about. How did I miss all of this?

At least I didn’t miss the Precision Medicine event! Here are the honorees, and the treasures they have shared with us, in a very small terse form.

Marcia Boyle (MB’s blogpost about the Immune Deficiency Foundation (IDF). Find them on Twitter at @MarciaIDF and @IDFCommunity)

Hugh Campos (HC’s blogpost about data liberation. Find him on Twitter @HugoOC)

Elizabeth Gross Cohn (EGC’s blogpost on the Adelphi University Center for Health Innovation, their Communities of Harlem Health Revival, and their interactive graphic novel. Find her on Twitter at @Chi_Cohn)

Amy Gleason (AG’s blogpost about CareSync. Find her on Twitter at @ThePatientsSide)

Amanda Haddock (AH’s blogpost about Dragon Master Foundation. Find them on Twitter at @AmandaHaddock and @DragonMasterFdn)

Emily Kramer-Golinkoff (EKG’s blogpost about Emily’s Entourage. Find them on Twitter at @emilykg1 and @EmsEntourage4CF)

Howard Look (HL’s blogpost about Tidepool. Find them on Twitter at @HowardLook and @Tidepool_org)

Dorothy Reed (DR’s blogpost about Sisters Network of Central New Jersey (SNCNJ). Find SNCNJ on Twitter at @sistercentral)

Anish Sebastian (AS’s blogpost about Babyscripts. Find him on Twitter at @ASebastian87 and @Babyscripts)

Here is the best Storify I’ve found of the #WHChamps event, by E. Keeley Moore.

It’s amazing that there were over 1000 tweets per minute at the peaK. Here is the Symplur archive of all the event’s tweets:

Symplur: Healthcare Hashtag Project: #WHChamps http://embed.symplur.com/twitter/transcript?hashtag=WHChamps&fdate=07%2F08%2F2015&shour=05&smin=25&tdate=07%2F09%2F2015&thour=00&tmin=00

Did you miss it and want to see it? The entire hour-long event was recorded and is available in the White House Youtube channel.

White House Champions of Change – Precision Medicine https://www.youtube.com/watch?v=yi1Tw1narVo