Roundup: On Accessible & Inclusive Conferences & Meetings

Accessible? Twist handle, then pull

I just returned from the annual meeting for the Medical Library Association, where multiple discussions arose around what would it look like to expand what is done to make the conference both accessible and inclusive. [Yes, the image at the head of this post is an actual photo from the actual meeting.] Just a couple weeks before that I was privileged to attend “Cripping” the Comic Con 2019 which was, by FAR, a truly exemplary model for how to create an inclusive event. (I’m hoping to write a second post about what blew my mind so much about CripCon!) Pretty much the same topic also arose in one of my Facebook groups, Teaching Disability Studies, where several of the resources mentioned here where shared.

Since my organization (UofM) has done some work in creating resources around this, and since I was on the original committee that created our resource, I volunteered to share that resource with MLA and put together a collection of selected resources related to this topic. The resources collected here are organized alphabetically within section (resources, readings) by either the author or providing organization. Organizations represented in the post include:
– ABA (American Bar Association)
– ACM SIGACCESS
– ADA National Network
– ASAN (Autism Self Advocacy Network)
– New York State
– Ohio State University
– Syracuse University
– University of Arizona
– University of British Columbia
– University of Michigan
– Vera Institute of Justice

RESOURCES

ABA Section of Civil Rights and Social Justice. Planning Accessible Meetings and Events, a Toolkit https://www.americanbar.org/content/dam/aba/administrative/mental_physical_disability/Accessible_Meetings_Toolkit.authcheckdam.pdf

You want to know what the lawyers think about what you should do? Well, start here. This 22 page PDF provides a number of thoughtful strategies to promote accessibility and inclusion in events, from working with attendees and presenters in an interactive way to plan the best possible event to post-event surveys designed to elicit information on accessibility improvements needed for future events. I’ve been working in disability spaces and communities most of my life, and they had suggestions that were new to me. I have some more work to do. This one is a must read.

ACM SIGACCESS. Accessible Conference Guide. https://www.sigaccess.org/welcome-to-sigaccess/resources/accessible-conference-guide/

It’s a bit amazing to me how each of these guides has something wonderful and necessary that I missed seeing or which wasn’t included in the other guides. This one includes discussions around making events safe for people with migraines, having drinking straws available, and where can a service dog relieve themselves with causing problems for the event. They point out that simply asking for a sign language translator doesn’t tell you which version of sign language the viewer needs, since there are regional and country variations which can be quite significant. They include example draft language for eliciting accommodation requests from attendees, registration, formatting your promotion material PDFs accessibly, and having a triage plan in case problems arise. This document is updated regularly, and this newest version was just updated a few weeks ago (April 2019). Note that they also have an Accessible Writing Guide and an Accessible Presentation Guide. Must read.

ADA National Network. A Planning Guide for Making Temporary Events Accessible to People With Disabilities. https://adata.org/publication/temporary-events-guide

Okay, this thing has chapters. I mean, CHAPTERS. That tells you something. In some ways, it’s almost too detailed. However, it also focuses almost exclusively on physical factors (venue, parking, toilets) and has very little on the interaction or experience. While this is highly detailed, the intended audience seems to be focused on government or community event planners, and not for professional events or conferences. This is more of a basic introduction to what is involved, and is intended for broad audiences. Also available as a 61 page PDF and a 119 page large print PDF.

ASAN: Planning Accessible and Inclusive Organizing Trainings: Strategies for Decreasing Barriers to Participation for People with I/DD https://autisticadvocacy.org/resources/accessibility/ PDF: https://autisticadvocacy.org/wp-content/uploads/2017/11/White-Paper-Planning-Accessible-and-Inclusive-Organizing-Trainings.pdf

While several of the other resources listed here focus primarily on physical barriers to inclusion, this document is absolutely essential for those with sensory integration concerns or learning disabilities. It explains and describes the impacts of such factors as loud or unpredictable noise, motion, and other stimuli; unpredictable events; abstract or overly-complex language; speaking spontaneously (or putting people in situations where they are expected to improvise their reactions); body language; touch; and much more. It includes information on scheduling that describes the need for breaks, use of plain language content, color communication badges, and the risks to the audience of some popular presentation engagement strategies. This is the only of the resources listed here to richly describe the role of support persons in events. I doubt it would be possible to plan an inclusive event sensitive to any of these issues without, at a minimum, reading a document like this one, or being close to someone who shares these issues and concerns. A must read.

New York State, Department of Health: People First: How To Plan Events Everyone Can Attend https://www.health.ny.gov/publications/0956/

This is a lovely document which includes both high level thinking around accessible events as well as fairly detailed specifics. This is one of few of these types of resources that spends time on the importance of developing a formal policy with specifications for events, and has suggestions for approaching the development of a policy if your organization lacks one. It includes nitty-gritty suggestions, such as “Plan for 30% more meeting space when 10% or more of the participants will use mobility aids,” having ramps to the stages, and how to look for tripping hazards. Absolutely a must read. Also available as a 13-page PDF.

Ohio State University: Composing Access, An invitation to creating accessible events https://u.osu.edu/composingaccess/

Includes information on making accessible presentations, including live-streaming and handouts (when, why, and how), as well as the expected accessibility thoughts and practices for conference organizers. Includes resources; ways to encourage attendees to act as advocates for accessibility and inclusion; descriptions and videos for creative practices like interaction badges, quiet rooms, “crip time,” and more.

Syracuse University: A Guide to Planning Inclusive Events, Seminars, and Activities at Syracuse University http://sudcc.syr.edu/resources/event-guide.html

Available only as a 27 page accessible PDF. This exceptionally detailed resource is far too rich a resource to do justice to in a brief description. Syracuse is the home of Cripping the Comic Con, and it is clear that they have really put considerable time and thought into not only conceptualizing accessible events, but putting this into practice, seeking feedback, and learning from experience. It has four appendices, of which the most essential, to my mind, is Diane Wiener’s example introduction in Appendix B. In addition to the usual content (planning, venue, promotion, and presentation) this guide includes prudent practices for inclusive use of language, use of images and media, the role of environment (fragrance, sound/noise, lights, color), and much more. This is my own preferred go-to guide for starting with this. I guess that means I should mark it a must read, too.

University of Arizona: A Guide to Planning Accessible and Inclusive Events https://drc.arizona.edu/planning-events/guide-planning-accessible-and-inclusive-events

A short example of how to write a resource like this for a campus community. Includes a brief but helpful section on how to train event support staff.

University of British Columbia: Checklist for Accessible Event Planning https://equity.ok.ubc.ca/resources/checklist-for-accessible-event-planning/

Exactly what it says — a collection of terse reminders of what should be remembered. Includes roughly 60 entries in 7 categories (planning, marketing, transportation, space, programming, catering, final). Available as a 9 page PDF download.

University of Michigan: Ten Tips for Inclusive Meetings https://hr.umich.edu/working-u-m/workplace-improvement/office-institutional-equity/americans-disabilities-act-information/ten-tips-inclusive-meetings

This information in this resource is presented in a layered fashion for ease of access, action, and remembering, similar to the UBC checklist. The ten tips are very short, focusing on major areas to consider, but include links to richer information for those willing to explore more deeply. The design stresses retention and adoption of the concepts by making them easy to access and simple to remember. Main areas included are scheduling, accessible presentations, promotion, restrooms, food and drink, personal assistance, offsite participation, representation, transportation and navigation, and options for help for event planning and management.

Vera Institute for Justice: Designing Accessible Events for People with Disabilities and Deaf Individuals https://www.vera.org/publications/designing-accessible-events-for-people-with-disabilities-and-deaf-individuals

This isn’t a guide or a checklist. This is a toolkit, and boy, does it have a lot of different tools. They have several different tip sheets focusing on special aspects of meetings and events, from registration to budgeting, and including venues and how the meeting itself is handled. They even have a tip sheet for working with Sign Language Interpreters, and how to develop successful contracts with hotel management (which sounds worth its weight in gold). These aren’t one page tip sheets, though. The tip sheet for designing accessible registration is 7 page long. That’s a lot of tips. These are so well done that countless other disability organizations host copies on their own websites and recommend them for their own audiences and clients. These are another must read.

Additional resources & examples

ACS-ALA, Accessibility and Libraries, October 4, 2017. Rough edited CART copy (Webinar transcript). https://docs.google.com/document/d/1JIVc5-QcvBb74AitQXrnFfHReYk6nnKez3gR33llHvU/edit

ALA Annual: Accessibility https://2019.alaannual.org/general-information/accessibility

Inclusion BC: How-to Make Your Event More Inclusive https://inclusionbc.org/our-resources/how-to-make-your-event-more-inclusive-2/ PDF: https://inclusionbc.org/wp-content/uploads/2019/02/Makeyoureventinclusive.pdf

NCCSD Clearinghouse and Resource Library: Inclusive Event Planning https://www.nccsdclearinghouse.org/inclusive-event-planning.html

WorldCon 76: https://www.worldcon76.org/member-services/accessibility

TO READ

This is a twitter thread from a few weeks back that “won Twitter,” as in it went viral, with 144 replies, 294 Retweets, and 1,562 Likes. It began with Alex Haagaard’s mention of their own accommodation requests at conferences, and resulted in a highly educational thread of accommodations people need or wish they could request at conferences. I recommend reading this thread for any conference planners or organizers.

MORE

“If part of what we train our students to do is enter into scholarly conversations, how we go about that conversation in our own professional settings matters.”
Accessibility at ASECS and Beyond: A Guest Post by Dr. Jason Farr and Dr. Travis Chi Wing Lau https://asecsgradcaucus.wordpress.com/2019/02/21/accessibility-at-asecs-and-beyond-a-guest-post-by-dr-jason-farr-and-dr-travis-chi-wing-lau/
Includes: “Toward a More Accessible Conference Presentation” https://drive.google.com/file/d/1xzGyfVlMRUwZMjuZ6mef87OXCIfN3uiW/view

“Use the microphone: this gets repeated dozens of times on Twitter every conference for at least the last five years. I guess I’ll just say: yes, abled people, using a microphone indicates that you are considerate of D/deaf and hard-of-hearing folks, and suggesting that others do is beneficial to the audience.”
S. Bryce Kozla. Accessibility and Conference Presentations https://brycekozlablog.blogspot.com/2018/01/accessibility-and-conference.html

“But I believe that losing my hearing was one of the greatest gifts I’ve ever received. You see, I get to experience the world in a unique way. And I believe that these unique experiences that people with disabilities have is what’s going to help us make and design a better world for everyone — both for people with and without disabilities. … I stumbled upon a solution that I believe may be an even more powerful tool to solve some of the world’s greatest problems, disability or not. And that tool is called design thinking.”
When we design for disability, we all benefit | Elise Roy https://www.ted.com/talks/elise_roy_when_we_design_for_disability_we_all_benefit?language=en

#ColorOurCollections 2019 from University of Michigan Collections

These are just a few favorite images from some works I’ve discovered in the University of Michigan Libraries. I turned them into coloring pages because I’m such a fan of the #ColorOurCollections project and because I think we have such wonderful collections here at UM and I like folk to know about them. Absolutely delighted that this year the UM Kelsey Museum took on the challenge!

https://twitter.com/kelseymuseum/status/1093163042026721280

Screenshot of Kelsey Museum tweet with thumbnails of black and white line drawings

#ColorOurCollections from our new coloring book created for the Ancient Color special exhibition! Learn more about the exhibition opening this Friday! (2/8):
http://myumi.ch/L3PjE

I’d love to do a lot more of this! Anyway, here’s just a few.


#ColorOurCollections 2019

From the 1898 edition of the Idylls of the King by Tennyson as illustrated by the Rhead Brothers.
Caption: “A little glassy-headed hairless man.” Original image (old man)


#ColorOurCollections 2019

From the Weird and Wonderful Maps exhibit held at the University of Michigan Maps Library a couple years back. Original image (map)


#ColorOurCollections 2019

Bookplate: Ship (Earl J. Dinges, DDS). Original image (ship)


#ColorOurCollections 2019

A Child’s Book of the Teeth, 1921. Original image (marching tooth)


#ColorOurCollections 2019

Dental Patent (circa 1890s): A new or improved toilet set for tooth powder, tooth brushes, and the like. Original image (toothbrush set)


#ColorOurCollections 2019

Macro: Flame demon. From an exhibit of historical anatomy curated by Barbara Shipman several years back. Original image (macro)

Health & Healthcare at #CES2019

I was working on a blogpost about wearables, smart textiles, and household tech for healthcare when the Consumer Electronics Show (CES) kicked off. Let me just step aside for a moment and collect some of the wonderful new and emerging technologies from there. Here’s a bunch of articles, videos, and tweets highlighting some of what was being shown off at CES 2019.

Gadgets were on or in:

  • abdomen
  • belts
  • ears
  • eyes
  • fingernails
  • head
  • stomach
  • wrists

Health & tech topics included:

  • 3D printing
  • AI
  • asthma
  • augmented reality
  • autonomous mobile clinics
  • babytech
  • body temperature management
  • brain activity tracking
  • caregiving with robots or virtually
  • eldertech
  • fall prevention
  • a fitness tracker that doesn’t require charging
  • food technologies
  • heart health and cardiology
  • imaging and radiology
  • incontinence
  • mobility aids
  • personalized health
  • pet health
  • posture
  • stroke recovery
  • surgery
  • virtual reality
  • weight management
  • wheelchairs that navigate based on facial expression

VIDEOS

CES 2019: Wristband ‘Can Control’ Your Body Temperature https://www.bbc.com/news/av/technology-46840471/ces-2019-wristband-can-control-your-body-temperature

ARTICLES & LINKS

The best CES 2019 health gadgets combat stress, pain, and more https://www.digitaltrends.com/mobile/best-health-gadgets-ces-2019/

Blood pressure watches and DIY sonograms: CES 2019 was all about health: At CES, health, wellness and medical tech are big focuses once again. https://www.cnet.com/news/from-a-blood-pressure-watch-to-diy-sonograms-ces-2019-was-all-about-health-tech/#ftag=CAD590a51e

CES 2019: First Alert Previewing New HomeKit-Enabled Smoke Detector-and-Speaker With Mesh Wi-Fi and AirPlay 2 https://www.macrumors.com/2019/01/07/first-alert-new-safe-sound-homekit-smoke-detector/

HealthTech wearables to major at CES 2019 http://healthtechpulse.com/2019/01/08/HealthTech-wearables-major-CES-2019

The Impossible Burger https://impossiblefoods.com

Matrix PowerWatch 2 uses solar and heat to power GPS, heart rate at CES 2019: The future of wearable fitness tech might be charge-free. https://www.cnet.com/news/solar-and-heat-powered-matrix-powerwatch-2-can-run-a-marathon-with-gps-and-heart-rate/

CES 2019: Omron HeartGuide blood pressure watch is for real: Detecting a sneaky heart condition could get a little easier with this watch: Just lift your arm and push a button. https://www.cnet.com/news/ces-2019-omron-heartguide-blood-pressure-watch-is-for-real/

Smoke Detective http://www.smokedetective.com

What’s new and what’s next in consumer health? https://www.linkedin.com/pulse/whats-new-next-consumer-health-roy-jakobs/

TWEETS

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Winter Break – Bingo!

Images of Christmas, New Years, Chanukkah, Kwanzaa, and Solstice from Open Clip Art https://bingobaker.com/view/1862418

It’s that time of year again! We are slowing down for the end of term, and gearing up (geeking up?) for the winter break. It’s always a good plan to have some extra activities available for those days where so many people are stuck at home. Following on the heels of last year’s tech comics & coloring books, here’s a collection of bingo options for the IT community!

Some of the bingo cards are designed to be played in groups with a caller, while others are designed to be interactive,  with the player filling in the card as they explore a virtual or game space or watch an event or TV show. You can either play bingo from themed cards designed by other folk, or you can make your own. If the kids are getting wild, you might consider having them design their own bingo cards with one of the many online bingo generators or apps. I’ve tried a few, and am rather fond of Bingo Baker, which has a kid-friendly URL, a community of folk sharing ones they’ve already made (please proof them before showing them to a kid), and tools to make and share your own. EduBaker is another option, similar, but a little less polished.

With Bingo Baker, it will randomly generate a number of different bingo cards from the same set of terms or phrases, it adjusts the text to fit the box, and it provides statistics on how many rounds to expect before someone shouts BINGO! For kids, you might suggest that they create a Bingo set of terms on one of their hobbies, or a favorite TV or Netflix show, or a favorite game. With BingoBaker you can also modify or build upon collections someone else already made, so you can customize after you find something on a topic you like. It is also possible to include images or drawings, and you could make a bingo card for spotting cars on those long drives.

Want to have something quick to print and use? There are, obviously, a lot of bingo cards already available online. Here are some along themes appropriate for your IT holiday party or winter gathering.

Of particular interest to me was the new IT security bingo game created by University of California-Irvine as an interactive educational activity for their students. Pretty darned clever! I wonder how it’s been received, or if this would be something to try here.  

If you want something that doesn’t have the risks of the big community collections for younger kids, Chris Osric made a very simple bingo card generator you could explore, and here’s a popular Anime-Bingo generator. There are also guidelines and tips in WikiHow and Instructables for making your own bingo cards, and more.  Examples include the basics, Avengers Bingo (visual), Comic Con Bingo (visual), Hipster Bingo (visual), Human Bingo (an ice breaker for parties), Super Mario, and Super Bowl Bingo for that most magical day (although you might prefer WIRED’s Superbowl Ad Bingo!). Check out these example Comic Con Bingo cards from New York, San Diego, Denver, Dash of Different. There are a TON of cosplay bingo options, but in the interests of remaining family friendly, I’m limiting the options here to the picture-based one from Tampa Bay Times (pdf), Comrade Comics and Anime Expo (both also visual), and the text-based one from AnimeCons.  If you have Arduino geeks in your house, you can make a bingo number generator.  

Last but not least, there are also a number of more family-friendly bingo cards already designed around various geeky and nerdy themes. Here are a few, just for fun, including some that are visual for preschoolers and non-readers. Some of these focus on critical thinking, by scanning for specific patterns of plot or character deficiencies, script crutches, and similar ways to watch a program more thoughtfully. There’s content here for a range of ages, from preschool to high school, so be sure to check them out before giving to the younger crowd.

Have you found or made some you enjoyed? Share them in the comments!

Mayo Clinic Social Media Network Annual Conference, Day Two

The second day had fewer sessions (see the first day here), but they were so powerful and relevant to my work. They provided content I wanted to directly share with colleagues and implement back home. I highly recommend skimming through the tweets collected in the morning and afternoon Wakelets. There’s a ton of great stuff from the concurrent sessions I didn’t get to (like adapting content for voice searching, supporting your organizational leaders as they get into social media, social listening tools, deconstructing stigma in mental health, and so so much more).

Susannah Fox at #MCSMN wearing #pinksocks

Susannah Fox at #MCSMN wearing #pinksocks

Image credit by Chris Boyer: https://twitter.com/chrisboyer/status/1063079588882980864

(PS – in this pic, notice the socks. That’s worth a second blogpost, but Susannah and I both wear #pinksocks for a reason. More on that later. Or if you see me wearing pink socks, ask me about them.)

Social Media for Good

Susannah Fox is someone I’ve admired for a long time, and it was a pure delight to hear her keynote for MCSMN. This was especially true after so much as a focus the previous day on how to identify, prevent, and manage different kinds of problem scenarios in social media and communication. To hear Susannah focus on hope and growth and community was a perfect way to refocus on how we can use new and existing technologies to do good. Susannah generously shared core nuggets and references from her talk in a blogpost. As a librarian, I really appreciated her call to action in support of open access content in healthcare. There was a big response to her sharing an online tool / movement called Now Now Now (about it: http://sivers.org/nowff).    

Susannah is an amazing storyteller, and had some good ones, full of heart and soul and kindness and caring. The one which spoke most to me was of a family caregiver trying to look out for a loved one in the hospital, who discovered a blogpost from someone else that gave critical information about how to advocate for them in a way that literally saved their life. There are a lot of amazing nuggets from Susannah’s talk. Here are just a few.

Ikigai

Matthew Rehrl, MD started his talk about ikigai with the 1918 pandemic. Ikigai is an old Japanese concept, Iki = life; kai = shell (which was the currency of the time, thus equating to  VALUE). He went on to use a number of examples building up the audience’s skills around how to look at actions and events and choices to extract a sense of where to find passion and purpose. That’s one petal of the ikigai four-leaf flower. He reframed it as, what’s the reason you get up in the morning?

The basic concept is framed with what you love, what you’re good at, where is there a need, and what generates value. It’s not static, it grows and changes as you do. This is true for both individuals and organizations. Matthew asked, “What is your organization’s passion?”

I spent a lot of time thinking about how Jane Blumenthal, our recently retired library director, helped each person in our library craft a job position that allowed us to shine, building from our strengths and interests to create a position that connects with the needs and purpose of the larger organization. What a gift. She built ikigai in and with the library.  

Permission to Fail

Jacob Weiss, Ph.D. of Do Good and Juggle presented a surprising and engaging interactive hands on keynote where he literally taught the audience how to juggle. But the real underlying concept, the take home point, was that to make progress you need to allow yourself to fail and keep trying, and that failing together and trying together changes how you experience failure.  An important lesson. It didn’t hurt that he used lots of exciting visuals to get the point across. [Please note that WordPress is not displaying the tweets properly, and that you’ll have to click through to see the images and videos.]

Stories to Build Trust

“Transforming Medical Education and Clinical Practice to Give Voice to Vulnerable Populations, LGTBQ, and Homeless Persons” by Katherine Y Brown, Ed.D. was a powerhouse presentation that several folk said should have been one of the keynotes. It blew my mind. Just a gold mine of insight and best practices for building trust and making change in the health of a marginalized community. Katherine went directly to transgender persons in the community, brought them to the table, and collaborated with them on getting the messages to the medical faculty and students that would change medical education around transgender issues.  She captured videos of real person’s experiences and challenges, and made videos with what could and should happen. The curriculum was changed. In one year. This is powerful stuff.

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More!

There was a lot more, but I’ll have to save some of that for another time. They have the slides up online now, so maybe I can go into some of the individual presentations in more detail. In the meantime, here’s the slides for more to explore!

 

Mayo Clinic Social Media Network Annual Conference, Day One

Sylvia Chou (NIH) at the MCSMN 2018 Annual Meeting

I recently returned from the Mayo Clinic Social Media Network Annual Conference and my boss asked me how it went. I replied that every single session was useful. That impressed both of us! Everything. I mean, quite literally, EVERYTHING. It’s all good, and there is nothing they offered that I didn’t want to see.

You can check out the program here, and I didn’t get to all the sessions offered, but I’d like to give you a quick run through of what I did see and why I thought it was so useful. You can’t be everywhere at once, and there were two in particular that I had hoped to see and just couldn’t, but there are links to some of the content! Or you could just browse the #MCSMN tweets in the Wakelets or through Symplur. The official highlights are captured in Mayo’s Day One and Day Two blogposts.

DAY ONE

Training

The big news was that Mayo offers detailed social media training for their own staff and students which has been tested over time and proven solid and useful.  Part of what I’m most excited about with this is access to training that is tool-based, issue-based, and includes online literacies, ethics, reputation management, and professionalism. Mayo has just upgraded their institutional site license from 10 users to the whole campus at a very reasonable cost.

Storytelling

The first keynote was from Dr. Alfredo Quinones-Hinojosa who told the story of having come to the United States as an illegal immigrant and migrant farm laborer and becoming the Chair of Neurologic Surgery at Mayo Clinic. Quite an impressive story (read his book if you want more), but the takeaways from his talk focused on the importance of teams, collaboration, surrounding yourself with people who are smarter than you, and listening to other people’s stories, helping people tell their own stories to create hope, understanding. My favorite quotes from Dr.Q’s talk:

Crisis Management

Dr Q (as he’s popularly known) was followed by a no-tweeting session on crisis communications in social media. The team of presenters (Lee Aase and Cynthia Manley) described real life scenarios, challenges, and solutions. The emphasis was in large part on what you know before the crisis starts — what is your organizational mission, focus, and purpose. Then when something goes wrong, at each step of the way, ask how does what you are doing support your mission, the ethics of your organization. The goodwill and trust you’ve built in advance can be your best defense. They also described challenges in knowing when the online problem is beyond your ability to manage, and some of the tools and strategies used by attackers to control the story to their own ends. The around-the-table conversations afterwards were pure gold.

Civility

Maureen S. Marshall from the CDC spoke on the need for civility in social media, whether you agree or disagree with the views being expressed. This is especially challenging when communicating around controversial topics or people who are frustrated with their experiences with your organization or others. How to encourage civility? Be respectful, don’t judge, don’t block, stick to the facts, use data. You don’t have to reply to everyone; it’s alright to ignore people who are being rude or trying to strike up an argument. Prepare in advance for those who try to hijack Twitter chats or Facebook streams. Consider the scale — what works with an audience of 100 may not work for 6000. Be sensitive to the tricky balance between get folk to share your important messages around safety and tipping over to fear-mongering. Have a fast approval process to pull in content from your experts. Prepare talking points for and with your experts, and share them. Be wary of styling templates, because bad actors can imitate your style to their own ends. Here are my favorite quotes from Maureen’s talk.

    Mistrust & Misinformation

    Wen-ying (Sylvia) Chou was an absolutely brilliant speaker. She presented on her research around health impacts of social media use. Like so many of the other speakers, a focus was the risks associated with fake news and misinformation, echo chambers and filter bubbles. She cited a ton of provocative articles and books. I was particularly  interested in LikeWar, the Weaponization of Social Media. Dr. Chou emphasized the motivations behind sharing, and how that impacts on the message and the receipt of the message. She described ways in which contentious health topics, like vaccines,  were used during the election to distract attention from specific political topics and also to foster mistrust of experts. The most powerful question she asked was, “Do we build trust? Or do we battle misinformation?” The impression I received was that it isn’t always possible to do both. Dr. Chou also relayed real world stories of patients asking questions triggered by things they read through social media, and being judged so harshly by the clinician that they fired the doctor and went elsewhere. Her research team is identifying communication best practices that are successful in addressing misinformation without undermining trust. Her strategy? Affirm their concerns. Praise them for being engaged. Then steer them to better information.

    Chatbots

    Rachel Haviland presented on how chatbots are being and can be used in healthcare. This is easily worth an entire blogpost just on this topic. The formative question from her talk was “What journey do we want to take our patients on?” She framed the ways in which chatbots can support a sense of caring and luxury and immediate thoughtful care, how chatbots can potentially support relationship building. She also discussed some of the risks, the pros and cons. Her marvelous slides are available here.

    Responding to Non-Local Crises

    Monique Tremblay and Tom Hardej’s presentation was a great followup to the morning’s crisis communications discussion, but with a different slant. When there is a crisis elsewhere or when there is social media buzz, how do you choose when and how to engage your communications or brand with that flow? Following examples of brands being blasted for doing this poorly, they described how their organization makes these decisions. Key takeaways:

Apps share data. Here’s an attempt to manage it.

Data Transfer Project homepage screenshot

Screenshot of the Data Transfer Project homepage.

There have always apps that share data with other apps or the operating system. Sometimes we want them to share data more than they do, sometimes we want them to not share data unless we know. A new effort from Facebook, Google, Twitter, and Windows aims to try to make it easier to share data when you want to, but to only share the data you decide to share. The Data Transfer Project describes the project as “a collaboration of organizations committed to building a common framework with open-source code that can connect any two online service providers, enabling a seamless, direct, user initiated portability of data between the two platforms.”

When they say open source, they mean it. There is a GitHub archive hosted by Google called data-transfer-project with over a thousand commits and 36 branches, and sections specifically for providers and developers. They have a Slack channel and a mailing list (dtp-discuss@googlegroups.com).

I know my first reaction was, “But what about security?” They’re ready for the question. Their White Paper has a substantial section on security and privacy that opens with:

“The security and privacy of user data is a foundational principle of the Data Transfer Project. Because there are multiple parties involved in the data transfer (the user, Hosting Entity, providers, and Contributors) no one person or entity can fully ensure the security and privacy of the entire system. Instead, responsibility is shared among all the participants.”

The section continues with discussions of data minimization, rate limiting, user notification, token revocation, minimal scopes for auth tokens, data retention, and abuse, with a table charting out how tasks and responsibilities are mapped out between the user, provider/exporter, provider/importer, hosting entity, and DTP system.

More information is in their White Paper.