Explains social media platforms; how patients, researchers & physicians are using social media; and presents the CTN study CHIWOS: our first study to have a social media strategy and ethics approval.

1. Social media & HIV research
Presented by Melanie Kuxdorf
May 3, 2012
www.hivnet.ubc.ca

2. www.hivnet.ubc.ca
Social Media & HIV Research
Overview:
•What is social media?
•Who’s using social media for
health?
•Pitfalls
•Benefits
•Best Practices
•CHIWOS: case study
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3. www.hivnet.ubc.ca
What is social media?
“Social media is the use of
technology combined
with social interaction to
collaborate, create and
share.”
~ Colleen Young
ColleenYoung.com
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Stats
• Facebook has over 800 million
active users. Half sign on every day.
• Twitter has over 200 million users
and grows by 500,000 every day.
• YouTube is the 3rd most trafficked
website in the world, after Google
and Facebook.
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What are you using?
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Facebook
• Style: Friend- & community-based
• Privacy:
• Page = public
• Group = members
• Personal account = based on privacy settings
• Frequency: Daily
• Content: ~1-4 sentences, + videos, photos,
links, text
• Interaction: liking, commenting, sharing posts

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Blogging
• Style: personal point of view
• Frequency: weekly
• Content: longer form (100-300 words)
text, w/images, links, videos
• Interaction: comments, keyword tags
make searchable

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LinkedIn
• Style: professional network
• Frequency: update profile as needed
• Content: CV-style information; give and
receive recommendations
• Interaction: join groups and discussions

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YouTube
• Style: broadcast one to many; general
public
• Frequency: ~once a month or more
• Content: videos
• Interaction: sharing videos, commenting,
liking, subscribing to channels

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Twitter
• Style: idea- & topic-based
• Privacy: public
• Frequency: several times/day
• Content: <140 characters, often w/links
• Interaction: reposting (retweeting) or
directing tweets i.e. @CIHR_CTN

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Twitter Chat
• Hashtag #HCSMCA
• Follow @HCSMCA
• Health Care Social Media Canada
• Wednesdays at 10am

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Social Media & Patients
• 61% of American Adults get health info
online
= 80% of all Internet users
• Nearly ¼ of people with chronic
conditions seek peer-to-peer help*
• Epatient: a person engaged in their own &
others’ healthcare online
• 60% consume social media
• 29% contribute content **
• are 60% more likely to participate in
clinical research***
* http://www.chcf.org/publications/2011/02/health-topics-internet-users-information** PewInternet.org http://ow.ly/acg5u
*** bluechipmarketingworldwide.com PDF: http://ow.ly/acfXL
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Digital Divide Narrowing
PewInternet.org http://ow.ly/acg5u
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Social Media & Vulnerable Populations
• Women
• 61% of Epatients are women between ages of 35-54
• Aboriginal people
• Can connect rural communities “Facebook instead
of phone calling cards” (see CBC Spark’s
Arctic Internet story)
• Broadband still a concern (esp. in north), but
increasing (Nunavut Broadband)
• People insecurely housed
• Access through community centres
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Social Media & Vulnerable populations
“No one has email but everyone
has a Facebook account”
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Health Providers & Social Media
Physicians in Canada
•1% on Facebook professionally
•11% on Twitter
•19% blog
•22% on other social media sites
 80% think social media poses risks
* CMA e-panel survey 2010 (non-randomized) For a survey of scientists see here
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What’s Stopping Us:
• Privacy Concerns
• Patient confidentiality
• Study info confidentiality
• Personal/Professional separation
• Ethics approval
• Time and money
• Unpaid work in some cases
• Too busy for social media
• Lack of knowledge
• Lack of proven clinical benefit
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Benefits of Social Media: For Health
Care Pros
• Keep up with latest research
• Monitor health trends
• Improve and correct online info
• Deliver public health messages
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Benefits of Social Media: For Orgs
• Connect with community
• Knowledge Translation
• Conduct research online
• Boost study recruitment & retention
• Increase transparency and trust
• Receive feedback (allows collaboration
for community-based research)
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Best Practices for Health Providers
• Privacy and Professionalism:
• Personal profiles (i.e. Facebook profiles)
• Keep strict privacy setting
• Don’t friend your participants or patients
• Don’t post info that could identify participants or patients
• Public profiles (i.e. Twitter, Facebook pages, LinkedIn)
• This is a public forum, and a permanent record: act accordingly
• Don’t break copyright
Follow CMA Guidelines
• Interact
• Not a soapbox: to be successful engage with and respond to your community
• Have fun
• Social media is supposed to be just that: social
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Best Practices for Orgs
• Know your audience and go where they are
• Not everyone will benefit from social media, most suited for:
• Groups looking for feedback and discussion
• Concepts that can engage a community
• Groups with staff able to spend ~15 minutes per work day with social media accounts
• Be strategic
• Choose the best platforms for your group and your staff
• Share (don’t just broadcast)
• Post thoughts and findings from others about the topic
• Championing others on social media has a symbiotic effect
• Create a social media policy (policytool.net)
• be clear about what you’re doing, and why
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Remember:
Social media is new
EVERYONE is learning
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Case Study: CHIWOS
• CHIWOS is CTN’s Canada-wide study
designed to assess health service disparities
for women living with HIV
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Case Study: CHIWOS
• CHIWOS: The Canadian
HIV Women’s Sexual and
Reproductive Health
Cohort Study
• The CTN’s CHIWOS study is
on Twitter
• Our first study to have
social media strategy & get
ethics approval
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31. www.hivnet.ubc.ca
Case Study: CHIWOS
“It will bring community members, researchers and
service-providers together to learn from HIV-positive
women about the challenges we face in accessing
care,”
~ Shari Margolese (CHIWOS peer research coordinator and member
of CTN’s Community Advisory Committee)
• Led by Drs:
• Mona Loutfy (Women’s College Hospital in Toronto)
• Robert Hogg (BC Centre for Excellence in HIV/AIDS)
• Angela Kaida (Simon Fraser University)
• Alexandra de Pokomandy (Montreal Chest Institute)
• + 29 co-investigators and 25 community collaborators
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Case Study: CHIWOS
• Ethics Board concerned about:
• Privacy of participants (no sharing of personal info)
• Who has access to accounts
• Accounts password protected
• Provide email so no one would publicly ask to participate
in the study
• What to show the Ethics Board
• Social Media Policy
• Similar to your website
• Be explicit about your use of social media
• Describe why you want to use it
• Give example posts
• Screen shots (photos) of social media pages
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33. www.hivnet.ubc.ca
CHIWOS Social Media Policy
“CHIWOS social media contributors are allowed to use social media for the
following purposes:
• To provide basic information about the study to the public.
• To share publically available news or journal articles pertaining to HIV and women’s health.
• To post photos or videos relevant to the project’s topical focus… Official video or photo
release documentation must be received from all identifiable CHIWOS individuals before
posting any videos or photos.
• To share research activities, including opportunities for participation in the study. Such
notices will direct potentially interested participants to contact Provincial Coordinators
directly via email or phone.”
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34. www.hivnet.ubc.ca
CHIWOS Social Media Policy
“Protecting the privacy of CHIWOS and its team members, partners and
participants:
While it's perfectly acceptable to talk about the study and have a dialog with
the community, CHIWOS social media contributors are prohibited from
publishing confidential information. Confidential information includes things
such as unpublished details about our research and data as well private and
personal information about CHIWOS team members, partners and
participants.”
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Your Network
Ask:
•Who is in your community?
•Who do you learn from?
•Who or what do you want to
influence? …and why?
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Resources:
• Aids.gov: everything you need to know about new media
• CMA social media policy
• A Primer on Blogs, Wikis, & Twitter (from UBC & Cochrane Canada
Symposium Workshop 2011)
• Mayo Clinic Center for Social Media
• Social Media For Social Good (book and blog)
• #HCSMCA (Health Care Social Media Canada) Twitter Chat
• #HCSMCA founder Colleen Young’s presentation: Clinician Peer Support
Network: Social networking online
• Free social media policy creator at policytool.net
• ...and me: socialmedia@hivnet.ubc.ca or on Twitter @melkux
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