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Social Media for Research
Tips, Strategies and Opportunities
Colleen Young
Manager of Social Innovation
ELLICSR, Princess Margaret Cancer Centre, UHN
Founder
Health Care Social Media Canada (#hcsmca)
Jackie Bender, PhD
Research Scientist
ELLICSR: Health, Wellness and Cancer Survivorship Centre
Phi Group, Centre for Global eHealth Innovation UHN
Assistant Professor
Dalla Lana School of Public Health, University of Toronto
Agenda
1. What is social media? Who is using it and how?

2. Overview of some social media tools
3. Examine how social media may be integrated into
the phases of clinical research

4. Research ethics and social media
5. Resources: Where you can explore further
What is social media?
Social media is the use of technology combined with
social interaction to collaborate, create and share.
Learn
Social media has allowed me to access
ideas, thoughts and opinions I would
never have been able to before.

Prajesh Narendra Chhanabhai, @Zimbarama, PhD
Candidate, University of Otago; New Zealand

6
Stay current
Social media helps me keep up with
innovations and articles written by and
recommended by colleagues.

Jennifer Lake, @jendlake, Assistant Professor,
Pharmacist; Toronto
Connect & collaborate
Social media doesn't just help me in my
research, it totally changed the way I
interact with collaborators.

Bertalan Meskó, @Berci, Digital Futurist, Founder of
Webicina.com; Hungary
Influence
Social impact measures complement
traditional citation metrics. …a useful
and timely metric to measure the uptake
of research findings.

Gunter Eysenbach, @eysenbach, MD, Senior Scientist,
Editor-in-chief & publisher of JMIR; Toronto

9
Inform & educate
People use social networking for health.
We need to connect, inform and inspire
them to affect change.

@docmikeevans, family physician, professor

10
What tool(s) and when?
#hashtags
• What is a hashtag?
• How are they used?
• What are tweet chats?
Relax
You don’t have to know all the tools nor do
you have to do this on your own.
Stages of research

Question

End of Grant

Recruitment

KT

Study

Data

Knowledge

Design

Analysis

Application

Integrated KT / Exchange
Determine the research question
Examples of tools you can use

What you could do and how
• Engage and learn from colleagues and
knowledge users
• Gather feedback from colleagues and
knowledge users
• Crowdsource research priorities from members
of online communities
• Search social media content
Study design
Examples of tools you can use

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

What you could do and how
• Use your organization’s social media channels
• Create a social media presence
• Make a video and share
• Reach out to community managers and leaders
• Partner with relevant organizations
Social media used to spur research

Lee Aase Medicine 2.0 Stanford, 2011
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
Content analysis of online posts
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/
Accelerate clinical discovery
Data analysis
Examples of tools you can use

What you could do and how
• Crowdsource data analysis – citizen scientists
• Member checking and validation
Engage the community to synthesize data
Post title: What do you wish health care professionals knew?
Tell us what you wish that health care professionals (doctors, nurses,
dietitians, physiotherapists, counselors, you name it) understood better
about diabetes.
If you want to participate, sometime in the next two weeks, put up a blog
post or post a video, and then post a link to it
here:"https://ulavalfmed.eu.qualtrics.com/SE/?SID=SV_3D9FOiaWQgy4w
Ul">Tell us what you wish health care professionals knew!</a>
After the two weeks are over, we will ask you to vote to help us prioritize
which ones we should show to health care professionals first.

Witteman, H. O. (PI), Archambault, P., Bender, J., Lee, J., Lichtman, M., Sparling, K., Vlasnik, K. Using social media to help student
clinicians better understand the experiences and expectations of people with chronic illness.
Engage the community to synthesize data

http://www.clicktocure.net/
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
Application of knowledge
Examples of tools you can use

What you could do and how
•
•
•
•
•

Educate via your organization’s social media
Create a social media presence & educate
Find your knowledge brokers
Create online interventions
Understand & leverage the influence of social
networks.
Ethics
Public versus private
You submit a protocol to the Research Ethics Board to
conduct a content analysis of the postings in Facebook
groups for teenagers of parents with cancer.
The REB coordinator emails you with questions:
1. Are users of the Facebook groups aware of the public
nature of their groups?
2. How can you negotiate consent?
Inadvertent disclosure
You submit a protocol to the Research Ethics Board to
use your organization’s social media channels (blog,
Twitter and Facebook) to recruit participants for a
study on cancer survivors experiences of transition.
The REB coordinator emails you with questions:
1. How do you protect individuals from inadvertently
sharing potentially identifying information about
themselves?
Inbound learning
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
#hashtag communities

@symplur

www.symplur.com
Health Care Social Media Canada
 3+ years
 8,308 participants
 110,786 tweets
 150 chats
Wednesdays at 1 pm ET
Last Wednesday of the month at 9 pm ET
cyhealthcommunications.wordpress.com
#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/
Who to follow
• @ELLICSR
• @CCSresearch
• @VirtualHospice
• @giustini
• @BonnieZink - @Kmbchat
• @eysenbach - @JMedInternetRes
Relevant upcoming events
December 4, 2013
10 am at U of T
• Research & Social Media Panel with
@AllanMcDougall, @CADTH_ACMTS, @hwitteman
and @colleen_young
1 pm ET on #hcsmca
• Wikis and Collaborative Writing Applications in
Health Care: A Scoping Review with
@patarchambault and @tomvandebelt and #hcsmca
Connect with ELLICSR

www.ellicsr.caca
Questions
www.theprincessmargaret.ca
www.ellicsr.ca
@colleen_young
@benderjack
@hcsmca
colleen.young@rmp.uhn.on.ca
jackie.bender@rmp.uhn.on.ca

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Using Social Media for Research: Tips, Strategies and Opportunities

  • 1. Social Media for Research Tips, Strategies and Opportunities Colleen Young Manager of Social Innovation ELLICSR, Princess Margaret Cancer Centre, UHN Founder Health Care Social Media Canada (#hcsmca) Jackie Bender, PhD Research Scientist ELLICSR: Health, Wellness and Cancer Survivorship Centre Phi Group, Centre for Global eHealth Innovation UHN Assistant Professor Dalla Lana School of Public Health, University of Toronto
  • 2. Agenda 1. What is social media? Who is using it and how? 2. Overview of some social media tools 3. Examine how social media may be integrated into the phases of clinical research 4. Research ethics and social media 5. Resources: Where you can explore further
  • 3. What is social media? Social media is the use of technology combined with social interaction to collaborate, create and share.
  • 4.
  • 5.
  • 6. Learn Social media has allowed me to access ideas, thoughts and opinions I would never have been able to before. Prajesh Narendra Chhanabhai, @Zimbarama, PhD Candidate, University of Otago; New Zealand 6
  • 7. Stay current Social media helps me keep up with innovations and articles written by and recommended by colleagues. Jennifer Lake, @jendlake, Assistant Professor, Pharmacist; Toronto
  • 8. Connect & collaborate Social media doesn't just help me in my research, it totally changed the way I interact with collaborators. Bertalan Meskó, @Berci, Digital Futurist, Founder of Webicina.com; Hungary
  • 9. Influence Social impact measures complement traditional citation metrics. …a useful and timely metric to measure the uptake of research findings. Gunter Eysenbach, @eysenbach, MD, Senior Scientist, Editor-in-chief & publisher of JMIR; Toronto 9
  • 10. Inform & educate People use social networking for health. We need to connect, inform and inspire them to affect change. @docmikeevans, family physician, professor 10
  • 12. #hashtags • What is a hashtag? • How are they used? • What are tweet chats?
  • 13. Relax You don’t have to know all the tools nor do you have to do this on your own.
  • 14. Stages of research Question End of Grant Recruitment KT Study Data Knowledge Design Analysis Application Integrated KT / Exchange
  • 15. Determine the research question Examples of tools you can use What you could do and how • Engage and learn from colleagues and knowledge users • Gather feedback from colleagues and knowledge users • Crowdsource research priorities from members of online communities • Search social media content
  • 16. Study design Examples of tools you can use What you could do and how • Use collaborative writing tools • Host video conferences • Share resources
  • 17. Recruitment Examples of tools you can use What you could do and how • Use your organization’s social media channels • Create a social media presence • Make a video and share • Reach out to community managers and leaders • Partner with relevant organizations
  • 18.
  • 19. Social media used to spur research Lee Aase Medicine 2.0 Stanford, 2011
  • 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. Content analysis of online posts
  • 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/
  • 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 Post title: What do you wish health care professionals knew? Tell us what you wish that health care professionals (doctors, nurses, dietitians, physiotherapists, counselors, you name it) understood better about diabetes. If you want to participate, sometime in the next two weeks, put up a blog post or post a video, and then post a link to it here:"https://ulavalfmed.eu.qualtrics.com/SE/?SID=SV_3D9FOiaWQgy4w Ul">Tell us what you wish health care professionals knew!</a> After the two weeks are over, we will ask you to vote to help us prioritize which ones we should show to health care professionals first. Witteman, H. O. (PI), Archambault, P., Bender, J., Lee, J., Lichtman, M., Sparling, K., Vlasnik, K. Using social media to help student clinicians better understand the experiences and expectations of people with chronic illness.
  • 26. Engage the community to synthesize data http://www.clicktocure.net/
  • 27. 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
  • 28. Application of knowledge Examples of tools you can use What you could do and how • • • • • Educate via your organization’s social media Create a social media presence & educate Find your knowledge brokers Create online interventions Understand & leverage the influence of social networks.
  • 29.
  • 31. Public versus private You submit a protocol to the Research Ethics Board to conduct a content analysis of the postings in Facebook groups for teenagers of parents with cancer. The REB coordinator emails you with questions: 1. Are users of the Facebook groups aware of the public nature of their groups? 2. How can you negotiate consent?
  • 32. Inadvertent disclosure You submit a protocol to the Research Ethics Board to use your organization’s social media channels (blog, Twitter and Facebook) to recruit participants for a study on cancer survivors experiences of transition. The REB coordinator emails you with questions: 1. How do you protect individuals from inadvertently sharing potentially identifying information about themselves?
  • 33. Inbound learning 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
  • 35. Health Care Social Media Canada  3+ years  8,308 participants  110,786 tweets  150 chats Wednesdays at 1 pm ET Last Wednesday of the month at 9 pm ET cyhealthcommunications.wordpress.com
  • 36. #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/
  • 37. Who to follow • @ELLICSR • @CCSresearch • @VirtualHospice • @giustini • @BonnieZink - @Kmbchat • @eysenbach - @JMedInternetRes
  • 38. Relevant upcoming events December 4, 2013 10 am at U of T • Research & Social Media Panel with @AllanMcDougall, @CADTH_ACMTS, @hwitteman and @colleen_young 1 pm ET on #hcsmca • Wikis and Collaborative Writing Applications in Health Care: A Scoping Review with @patarchambault and @tomvandebelt and #hcsmca

Editor's Notes

  1. The number of times a published, peer-reviewed article is referred to by other publications, known as a citation, is a common method to evaluate the scientific impact of a researcher. Techna Co-Director, Communication and Knowledge Transfer and TGRI Senior Scientist Dr. Gunther Eysenbach examined the use of the popular social media outlet Twitter as a means of effectively predicting the scientific impact of a published study.The study examined all Twitter references (tweets) to scientific articles published in theJournal of Medical Internet Research between July 2008 and November 2011 and compared them to citation data from two of the largest citation databases, Scopus and Google Scholar. Articles receiving the most tweets were found to be 11 times more likely to be highly cited.Commenting on the use of Twitter in predicting scientific impact, Dr. Eysenbach says, &quot;These findings suggest that social impact measures based on tweets complement traditional citation metrics. The proposed &apos;twimpact&apos; factor may be a useful and timely metric to measure the uptake of research findings and to filter research findings resonating with the public in real time.&quot;
  2. Do I have to do all that????No. [find a calm picture. Discussion about using the tools, finding knowledge brokers, influencers and communities.
  3. Exchange - collaborative problem-solving between researchers and decision makers that happens through linkage and exchange. Effective knowledge exchange involves interaction between knowledge users and researchers and results in mutual learning through the process of planning, producing, disseminating, and applying existing or new research in decision-making.
  4. What tools you can use.What you could do.How to do itContent vs. peopleSearch online content of online conversations to determine the problem, engage community managers.
  5. Networks and Toolswiki or collaborative space to develop study design with collaborators
  6. study what is available ask people to contribute (Survey, discussions, etc)co-design of data collection tools
  7. Enabling Community Through Social MediaAnatoliy Gruzd1, PhD; Caroline Haythornthwaite2, PhD1School of Information Management, Faculty of Management, Dalhousie University, Halifax, NS, Canada2School of Library, Archival and Information Studies, The iSchool at UBC, University of British Columbia, Vancouver, BC, CanadaTwitter communication network on #hcsmcacoloured by professional roles, nodes sized by in-degree centrality.
  8. software (free and price) use to help study activity in online environmentsCancer research UKCrowdsourcingHolly
  9. know your audience and medium to tailor the messageGunther&apos;s tweet citationhcsmca and other CoPfind your knowledge brokerssocial media channels to public (Application of Knowledge?)
  10. Make a distinction between KT and application of Knowledge
  11. CIHR Strategic Training Program on Health Care, Technology, and Place (HCTP) CIHR Strategic Training Program on Health Care, Technology, and Place (HCTP) CIHR Strategic Training Program on Health Care, Technology, and Place (HCTP) @AllanMcDougallSchulich School of Medicine &amp; Dentistry at Western University@CADTH_ACMTS Andrea Tiwari is currently a Knowledge Mobilization Officer at CADTH (Canadian Agency for Drugs and Technologies in Health, Ottawa). @hwitteman Holly Witteman is an assistant professor (Université Laval) and a former HCTP fellow (2007-2009). Her research is about the design, use and evaluation of interactive media for health risk communication and decision making. @colleen_young@patarchambaultEmergency, Critical Care physician, Knowledge Translation Researcher, Research on Wikis, #hcsm, #FOAMed@tomvandebeltPhD Candidate | Health 2.0 | Participatory Healthcare | Wikis | Exercise Physiology | Speedskating | Snowboarding | Cycling#REshape @radboudumc