Presentation of social media for HIV researchers: benefits, pitfalls, best practices, and resources for clinical research. Presented for the CTN's Prevention and Vulnerable Populations Core meeting, April 18, 2012.

1. Social Media & Clinical Research
Presented by Melanie Kuxdorf (@melkux)
April 18, 2012
www.hivnet.ubc.ca

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Social Media & Clinical Research
Overview:
•Context: Who’s using social media
in health & how?
•Pitfalls: What’s stopping us
•Benefits: for researchers & studies
•Best Practices
•Case study: CHIWOS (first CTN
study with a social media policy &
ethics approval)
•Resources

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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
• Majority 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 access
increasing (Nunavut Broadband)
• People insecurely housed
• Access through community centres
* bluechipmarketingworldwide.com PDF: http://ow.ly/acfXL

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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) CMA’s Pat Rich’s Presentation For a survey of scientists see here

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What’s Stopping Us:
• Privacy Concerns
• Participant 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: Researchers
• 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: Studies
• Boost study recruitment & retention
• Increase study profile
• Increase capacity of staff
• Increase transparency and trust
• Receive feedback (allows collaboration
for community-based research)
• Foster Knowledge Translation
• Conduct research online

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Best Practices for Researchers
• 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
• You wouldn’t break copyright in a journal article, so don’t do it in your blog/Facebook/Twitter post
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 Studies
• Know your audience and go where they are
• Not all studies will benefit from social media, most suited for:
• studies looking for feedback and discussion
• study concepts that can engage a community
• studies with staff able to spend ~15 minutes per work day with social media accounts
• Be strategic
• Choose the best platforms for your study 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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CHIWOS & Social Media
• The CTN’s Canadian HIV Women’s
Sexual and Reproductive Health
Cohort Study (CHIWOS) is on
Twitter (@CHIWOSresearch)

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CHIWOS & Social Media
• 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
• Content 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 your social media pages

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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
• #HCSMCA (Health Care Social Media Canada) Twitter Chat
• #HCSMCA founder Colleen Young’s presentation: Clinician Peer Support
Network: Social networking online
• #HRSM (Harm Reduction Social Media) Twitter Chat (time to create
#HRSMCA?)
• Free social media policy creator at policytool.net
• ...and me: socialmedia@hivnet.ubc.ca or on Twitter @melkux