This presentation explores how researchers can leverage the social web throughout all stages of research from study design, recruitment and through to knowledge dissemination and integrated KT. Colleen Young discusses the synergies of online communities and research, the people who lead and manage the communities and researchers. The presenter encourages discussion throughout the presentation and will tailor its flow to the attendees' knowledge and participation.

1. SOCIAL NETWORKING, ONLINE
COMMUNITIES & RESEARCH
Colleen Young
Online Community Strategist & Engagement Specialist
WCHRI Rounds, February 13, 2015
Pease tweet
@colleen_young

2. 1. Review 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 community online?
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
 4.5+ years
 14,500 participants
 168,000 tweets
 207 chats
Wednesdays at 1 pm ET
Last Wednesday of the month at 9 pm ET
cyhealthcommunications.wordpress.com

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

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. Exploring with #hcsmca

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

16. 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
Recruitment

17. Using Twitter to recruit

19. 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?
REB concerns

20. DISCUSSION
How will you protect individuals from inadvertently
sharing potentially identifying information about
themselves?

21. 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

22. 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/

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

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

25. 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

26. 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

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

28. #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/

29. #hcsmca
Health Care Social Media Canada
http://cyhealthcommunications.wordpress.com/hcsmca
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

30. cyhealthcommunications.wordpress.com
@colleen_young
@hcsmca
colleen@colleenyoung.com
Questions

31. THANK YOU