Social Media and Clinical Research (short)


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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.

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Social Media and Clinical Research (short)

  1. 1. Social Media & Clinical Research Presented by Melanie Kuxdorf (@melkux) April 18,
  2. 2. Follow @CIHR_CTN www.hivnet.ubc.caSocial 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
  3. 3. Follow @CIHR_CTN 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**** ***** PDF:
  4. 4. Follow @CIHR_CTN www.hivnet.ubc.caDigital Divide Narrowing
  5. 5. Follow @CIHR_CTN www.hivnet.ubc.caSocial 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 * PDF:
  6. 6. Follow @CIHR_CTN www.hivnet.ubc.caSocial Media & Vulnerable Populations “No one has email but everyone has a Facebook account”
  7. 7. Follow @CIHR_CTN www.hivnet.ubc.caHealth 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
  8. 8. Follow @CIHR_CTN www.hivnet.ubc.caWhat’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
  9. 9. Follow @CIHR_CTN www.hivnet.ubc.caBenefits of Social Media: Researchers• Keep up with latest research• Monitor health trends• Improve and correct online info• Deliver public health messages
  10. 10. Follow @CIHR_CTN www.hivnet.ubc.caBenefits 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
  11. 11. Follow @CIHR_CTN www.hivnet.ubc.caBest 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
  12. 12. Follow @CIHR_CTN www.hivnet.ubc.caBest 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 ( • be clear about what you’re doing, and why
  13. 13. Follow @CIHR_CTN www.hivnet.ubc.caCHIWOS & Social Media• The CTN’s Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) is on Twitter (@CHIWOSresearch)
  14. 14. Follow @CIHR_CTN www.hivnet.ubc.caCHIWOS & 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
  15. 15. Follow @CIHR_CTN www.hivnet.ubc.caResources:• 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• ...and me: or on Twitter @melkux