Autism & Social Media: Social Media Platforms in … · Understand how social media platforms can be used to educate and communicate with those affected by an autism diagnosis 2

© Copyright 2014 Afia Inc. 1

Autism & Social Media:

Social Media Platforms

in Healthcare

October 27, 2014


Welcome

Bobbie Rathjens

Healthcare Social Media Strategist

Kathy Dettling

Manager of Clinical Strategies


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


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


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


We all know someone…

Meet Gavin

14 years old

Dx at age 4 with HFA


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


Social Media TODAY

25% of world’s total

population using social media

Most popular sites:

Facebook, Twitter, YouTube,

LinkedIn, Instagram,

Pinterest

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


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


Traditional Support Model

Friends & Family

(unpaid)

Clinical / Medical

Supports (paid by

insurance)

Community Supports

(free & for purchase)

Support Plan

Support

groups

Advocacy

groups


Traditional Support Groups

Face to face

Moderated

Participants perhaps more

mindful of comments, well

behaved

Empathy, therapeutic value

Sharing of stories & ideas

1980s & 1990s


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/



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/



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


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


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


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


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


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


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


Social Channels & Groups


Social Channels & Groups (cont.)


Social Channels & Groups (cont.)


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

https://www.facebook.com/search/more/?q=autism

http://www.patientslikeme.com/

http://www.myautismteam.com/activities

http://www.mdjunction.com/autism

http://www.cafemom.com/group/76

http://autismsupportnetwork.leveragesoftware.com/

https://www.youtube.com/user/AutismLive

http://www.michigan.gov/autism


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


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


Documents

Autism & Social Media: Social Media Platforms in … · Understand how social media platforms can be used to educate and communicate with those affected by an autism diagnosis 2