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© Copyright 2014 Afia Inc. 1
Autism & Social Media:
Social Media Platforms
in Healthcare
October 27, 2014
© Copyright 2014 Afia Inc. 2
Welcome
Bobbie Rathjens
Healthcare Social Media Strategist
Kathy Dettling
Manager of Clinical Strategies
© Copyright 2014 Afia Inc. 3
Workshop Objectives
1. Understand how social media platforms can be used
to educate and communicate with those affected by
an autism diagnosis
2. Employ methods and strategies to communicate
more effectively using social media in the healthcare
realm
3. Specify the best social media networks for patient
dialogue
© Copyright 2014 Afia Inc. 4
What We’ll Cover Today
6 Different Types of Social Media
We All Know Someone with Autism
Social Media in 2004
Social Media TODAY
Traditional & Online Support Group Models
Traditional Support Groups vs. Online Support Groups
A Tragedy is Highlighted in Social Media
Social Media Channels & Groups for Patients
Autism Resources
Best Practices
© Copyright 2014 Afia Inc. 5
Types of Social Media
6 Different Types of
Social Media:
1. Collaborative Projects
2. Blogs & Microblogs
3. Content Communities
4. Social Networking Sites
5. Virtual Gaming Worlds
6. Virtual Social Worlds
Users of the World Unite! The Challenges & Opportunities of Social Media, by Kaplan & Haenlein
© Copyright 2014 Afia Inc. 7
Social Media in 2004?
Facebook was started
at Harvard
MySpace surpassed
Friendster in page
views
Podcasting began on
the internet
Flickr debuts
Digg was founded
From: http://www2.uncp.edu/home/acurtis/NewMedia/SocialMedia/SocialMediaHistory.html
© Copyright 2014 Afia Inc. 8
Social Media TODAY
25% of world’s total
population using social media
Most popular sites:
Facebook, Twitter, YouTube,
LinkedIn, Instagram,
U.S. has 200 million social
media users
Millions of people follow
brands on Facebook
From: http://www2.uncp.edu/home/acurtis/NewMedia/SocialMedia/SocialMediaHistory.html
© Copyright 2014 Afia Inc. 9
Social Media TODAY (cont.)
What does this mean for
healthcare and autism?
Thousands of people are able
to connect online, share
experiences
Provide / get support 24/7
Patient empowerment &
improved health outcomes
Easy accessibility
No physical /geographic
boarders
© Copyright 2014 Afia Inc. 10
Traditional Support Model
Friends & Family
(unpaid)
Clinical / Medical
Supports (paid by
insurance)
Community Supports
(free & for purchase)
Support Plan
Support
groups
Advocacy
groups
© Copyright 2014 Afia Inc. 11
Traditional Support Groups
Face to face
Moderated
Participants perhaps more
mindful of comments, well
behaved
Empathy, therapeutic value
Sharing of stories & ideas
1980s & 1990s
© Copyright 2014 Afia Inc. 12
Traditional Support Groups (cont.)
Studies show:
Patients profit from
engagement in peer support
groups
Groups can offer emotional
support, confidence,
strength, foster hope
Lead to improved coping
and less distress
Determinants of Engagement in Face-to-Face and Online Patient
Support Groups - http://www.jmir.org/2011/4/e106/
© Copyright 2014 Afia Inc. 13
Traditional Support Groups (cont.)
Studies show:
Improved quality of
life for participants
Despite empowering
outcomes, many face
to face peer support
groups have only
small numbers of
participants
Determinants of Engagement in Face-to-Face and Online Patient
Support Groups - http://www.jmir.org/2011/4/e106/
© Copyright 2014 Afia Inc. 14
Traditional Support Groups (cont.)
Challenges
Required leaving the home
resulting in child care needs
No funding or insurance
coverage for traditional support
groups
In smaller / rural communities
less likelihood of group formation
Implied / no right to
confidentiality
Duty to report
© Copyright 2014 Afia Inc. 15
Online Support Model
Friends & Family
(unpaid)
Clinical / Medical
Supports (paid by
insurance)
Community Supports
(free & for purchase)
Support Plan
Support
groups
Advocacy
groups
SOCIAL MEDIA
© Copyright 2014 Afia Inc. 16
Online Support Groups
Computer to computer
Not professionally moderated
Participants tend to be more
biting in comments and
judgment
Informational in nature;
information accuracy not clear
No “duty to report” law
© Copyright 2014 Afia Inc. 17
Online Support Groups (cont.)
No expectation of
confidentiality
Outlet for frustration
(similar to journaling or
therapy)
Difficult to determine
what’s based on research
or personal experience
© Copyright 2014 Afia Inc. 18
Online Support Groups (cont.)
Broccoli Sprouts for Autism?
Scientific report says
sulforaphane (chemical in
broccoli) helps ease autism
symptoms
Now parents are adding
broccoli sprouts to kids’ meals
False sense of resolution or
cure
From: http://www.autismspeaks.org/blog/2014/10/14/broccoli-sprouts-autism-what-you-need-know
© Copyright 2014 Afia Inc. 19
A Tragedy is Highlighted
Who is the mom?
Accused of trying to kill herself
and her severely autistic daughter
Blogger “the status woe”
Producer / host of podcast “Birth
Stories on Demand,” Author
© Copyright 2014 Afia Inc. 20
A Tragedy is Highlighted (cont.)
What happened?
A family struggles to find answers with
autism
A mother finds support within social
media
A tragedy occurs
The public verdict is fueled through
journalism and is played out in social
media
The blame game becomes vicious and
personal
A family’s life is now a national
headline
© Copyright 2014 Afia Inc. 24
Autism Resources
Facebook Groups https://www.facebook.com/search/more/?q=autism
Patients Like Me http://www.patientslikeme.com
My Autism Team http://www.myautismteam.com/activities
MD Junction http://www.mdjunction.com/autism
Café Mom http://www.cafemom.com/group/76
Autism Support Network http://autismsupportnetwork.leveragesoftware.com
Autism Live (YouTube) https://www.youtube.com/user/AutismLive
State of Michigan http://www.michigan.gov/autism
© Copyright 2014 Afia Inc. 25
Best Practices
Social media is an effective tool for
patients and advocates to learn
more about autism and find
support
Healthcare workers should be
encouraged to share relevant
information and links on
organizational social media pages
Workers should be educated on
social media best practices and
how to respond to patients
Set clear boundaries for staff with
regards to social media usage
© Copyright 2014 Afia Inc. 26
Best Practices (cont.)
DON’T friend patients or
caregivers on social media
– paid relationships create a
power issue
DO have policies / guidelines in
place for organization internal /
external social media channel
usage
DO give patients and
caregivers resources for online
support