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www.hivnet.ubc.ca Social Media & Clinical Research Presented by Melanie Kuxdorf (@melkux) April 18, 2012
| Date post: | 10-May-2015 |
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www.hivnet.ubc.ca
Social Media & Clinical ResearchPresented by Melanie Kuxdorf (@melkux) April 18, 2012
www.hivnet.ubc.ca
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
* 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: [email protected] or on Twitter @melkux
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