Social Networking, Online Communities and Clinical Research

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Social Networking, Online Communities and Clinical Research

  1. 1. Social Networking, Online Communities & Research Colleen Young Manager of Engagement & Social Innovation ELLICSR, Princess Margaret Cancer Centre, UHN Founder Health Care Social Media Canada (#hcsmca)
  2. 2. 1. Overview some of the common social tools 2. Define social media vs. social networking vs. online community 3. Examine how online social connections, user- generated content and online communities can be leveraged at all phases of clinical research 4. Review the inbound value of social networking for researchers 5. Discussion Agenda
  3. 3. The media, the tools
  4. 4. Social networking is the use of technology combined with social interaction to • Learn • Collaborate • Create • Inform • Influence • Share Social networking
  5. 5. What is an online community? A group of people who share a strong common interest, form relationships and interact online.
  6. 6. Researchers & Community Managers
  7. 7. Colleen Young @colleen_young
  8. 8. Health Care Social Media Canada  3.5+ years  12,023 participants  139,777 tweets  180 chats Wednesdays at 1 pm ET Last Wednesday of the month at 9 pm ET cyhealthcommunications.wordpress.com
  9. 9. www.ellicsr.caca ELLICSR online
  10. 10. Stages of research Question Study Design Recruitment Data Analysis End of Grant KT Knowledge Application Integrated KT / Exchange
  11. 11. Examples of tools you can use What you could do and how • Search user-generated content • Engage people and/or community managers Research question
  12. 12. Exploring with #hcsmca
  13. 13. Study design Examples of tools you can use What you could do and how • Use collaborative writing tools • Host video conferences • Share resources
  14. 14. Archambault PM et al., Wikis and Collaborative Writing Applications in Health Care: A Scoping Review J Med Internet Res 2013;15(10):e210 http://www.jmir.org/2013/10/e210/ Wikis & collaborative writing tools
  15. 15. Social media used to spur research Lee Aase Medicine 2.0 Stanford, 2011
  16. 16. Recruitment Examples of tools you can use What you could do and how • Create a social media presence • Make a video and share • Reach out to community managers and leaders • Partner with relevant organizations • Use your organization’s social media channels
  17. 17. Using Twitter to recruit
  18. 18. REB concerns 1. Are users aware of the public nature of their posts? 2. Are some social media platforms better than others in terms of privacy measures? 3. Are users aware of the potential for privacy breaches and their implications? 4. How will you protect individuals from inadvertently sharing potentially identifying information about themselves? 5. Will these platforms to turn off their data mining activities associated with your study hyperlinks?
  19. 19. Discussion How will you protect individuals from inadvertently sharing potentially identifying information about themselves?
  20. 20. Data collection Examples of tools you can use What you could do and how • Study social media content publicly available • Survey members of social media platforms • Conduct online focus groups • Co-design data collection tools
  21. 21. Social network analysis of #hcsmca Gruzd A, Haythornthwaite C Enabling Community Through Social Media J Med Internet Res 2013;15(10):e248 URL: http://www.jmir.org/2013/10/e248/
  22. 22. Data analysis Examples of tools you can use What you could do and how • Crowdsource data analysis – citizen scientists • Member checking and validation
  23. 23. Engage the community to synthesize data http://www.clicktocure.net/
  24. 24. End of Grant KT Examples of tools you can use What you could do and how • Disseminate via your organization’s social media • Share on own social media channels • Find your knowledge brokers • Make a video and share • Share with online communities of practice and communities of interest • Host or be a guest an online event
  25. 25. Learn, connect & collaborate Examples of tools you can use What you could do and how • Listen and learn • Adapt and adopt • Share information • Experiment, fail and iterate • Collaborate and co-create
  26. 26. #hashtag communities www.symplur.com@symplur
  27. 27. #hcsmca chats • Chat 48 How can social media be used to raise awareness of the latest health research in Canada, and generate support for health research overall? • Chat 73 How can social media help put new research findings and/or clinical guidelines into practice? • Chat 104 Discuss the challenges of engaging on social media to inform a research agenda. Complete #hcsmca transcript archives: http://cyhealthcommunications.wordpress.com/hcsmca-archives/
  28. 28. #hcsmca Health Care Social Media Canada http://cyhealthcommunications.wordpress.com/hcsmca-2/ O’Connor A et al., Can I get a retweet please? Health research recruitment and the Twittersphere http://onlinelibrary.wiley.com/doi/10.1111/jan.12222/pdf Young C, Community Management That Works: How to Build and Sustain a Thriving Online Health Community http://www.jmir.org/2013/6/e119/ Resources
  29. 29. www.theprincessmargaret.ca www.ellicsr.ca cyhealthcommunications.wordpress.com @colleen_young @ellicsr @hcsmca colleen@colleenyoung.com Questions

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