Autism & Social Media: Social Media Platforms in Healthcare
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1 Autism & Social Media: Social Media Platforms in Healthcare October 27, 2014 Copyright 2014 Afia Inc. 1
2 Welcome Bobbie Rathjens Healthcare Social Media Strategist Kathy Dettling Manager of Clinical Strategies Copyright 2014 Afia Inc. 2
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. 3
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. 4
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. 5
6 We all know someone Meet Gavin 14 years old Dx at age 4 with HFA Copyright 2014 Afia Inc. 6
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: Copyright 2014 Afia Inc. 7
8 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: Copyright 2014 Afia Inc. 8
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. 9
10 Traditional Support Model Friends & Family (unpaid) Clinical / Medical Supports (paid by insurance) Support groups Advocacy groups Community Supports (free & for purchase) Support Plan Copyright 2014 Afia Inc. 10
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. 11
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 - Copyright 2014 Afia Inc. 12
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 - Copyright 2014 Afia Inc. 13
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. 14
15 Online Support Model SOCIAL Friends & Family (unpaid) MEDIA Clinical / Medical Supports (paid by insurance) Support groups Advocacy groups Community Supports (free & for purchase) Support Plan Copyright 2014 Afia Inc. 15
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. 16
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. 17
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: Copyright 2014 Afia Inc. 18
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. 19
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. 20
21 Social Channels & Groups Copyright 2014 Afia Inc. 21
22 Social Channels & Groups (cont.) Copyright 2014 Afia Inc. 22
23 Social Channels & Groups (cont.) Copyright 2014 Afia Inc. 23
24 Autism Resources Facebook Groups Patients Like Me My Autism Team MD Junction Café Mom Autism Support Network Autism Live (YouTube) State of Michigan Copyright 2014 Afia Inc. 24
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. 25
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 Copyright 2014 Afia Inc. 26
27 Copyright 2014 Afia Inc. 27
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