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. 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. The media, the tools

4. Social networking is the use of technology combined
with social interaction to
• Learn
• Collaborate
• Create
• Inform
• Influence
• Share
Social networking

5. What is an online community?
A group of people who share a
strong common interest, form
relationships and interact online.

6. Researchers & Community Managers

7. Colleen Young @colleen_young

9. 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

10. www.ellicsr.caca
ELLICSR online

11. Stages of research
Question
Study
Design
Recruitment
Data
Analysis
End of Grant
KT
Knowledge
Application
Integrated KT / Exchange

12. Examples of tools you can use
What you could do and how
• Search user-generated content
• Engage people and/or community managers
Research question

13. Exploring with #hcsmca

14. Study design
Examples of tools you can use
What you could do and how
• Use collaborative writing tools
• Host video conferences
• Share resources

15. 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

16. Social media used to spur research
Lee Aase Medicine 2.0 Stanford, 2011

17. 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

18. Using Twitter to recruit

20. 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?

21. Discussion
How will you protect individuals from inadvertently
sharing potentially identifying information about
themselves?

22. 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

23. 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/

24. Data analysis
Examples of tools you can use
What you could do and how
• Crowdsource data analysis – citizen scientists
• Member checking and validation

25. Engage the community to synthesize data
http://www.clicktocure.net/

26. 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

27. 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

28. #hashtag communities
www.symplur.com@symplur

29. #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/

30. #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

31. www.theprincessmargaret.ca
www.ellicsr.ca
cyhealthcommunications.wordpress.com
@colleen_young
@ellicsr
@hcsmca
colleen@colleenyoung.com
Questions