Presented at the SPONDYLOARTHRITIS RESEARCH AND TREATMENT NETWORK (SPARTAN) Research and Education Meeting, Saturday, May 5, 2018, Cambridge, MA.

1. Social Media in Clinical Research
PRESENTED AT
SPONDYLOARTHRITIS RESEARCH AND TREATMENT NETWORK (SPARTAN)
Research and Education Meeting, Saturday, May 5, 2018, Cambridge, MA
Katja Reuter, PhD
Director of Digital Innovation and Communication, Southern California Clinical and
Translational Science Institute (SC CTSI), University of Southern California (USC)
Assistant Professor of Clinical Preventive Medicine, Institute for Health Promotion and Disease
Prevention Research, Department of Preventive Medicine, Keck School of Medicine of USC

2. Disclosure Information
Katja Reuter, PhD
Department of Preventive Medicine, Keck School of Medicine of USC
Southern California Clinical and Translational Science Institute
University of Southern California
The speaker has no actual or potential financial or other conflict of
interest in relation to this presentation.

3. Today’s Topics
1. Digital populations and social media platforms
2. Digital strategy approach, focus on social media
3. Social media and clinical research recruitment
4. Ethical and regulatory considerations
5. A word about effectiveness

4. Americans’ Use of Social Media
http://www.pewinternet.org/fact-sheet/social-media/

5. Social Media Trends in Early 2018 in the U.S.
http://www.pewinternet.org/2018/03/01/s
ocial-media-use-in-2018/
A majority of Americans use Facebook
and YouTube
The youngest adults stand out in their
social media consumption; some 88% of
18- to 29-year-olds use some form of
social media
Facebook is used by a majority of
Americans across a wide range of
demographic groups (exception 65+)

6. http://www.pewinternet.org/2018/03/01/so
cial-media-use-in-2018/
Young adults (18-24) are substantially
more likely to use platforms such as
Snapchat, Instagram and Twitter even
when compared with those in their mid- to
late-20s
Social Media Trends in Early 2018 in the U.S.
Roughly three-quarters of Facebook users
– and around six-in-ten Snapchat and
Instagram users – visit each site daily

7. http://www.pewinternet.org/2018/03/01/social-
media-use-in-2018/
Social Media Trends in Early 2018 in the U.S.
Pinterest remains substantially more popular
with women (women 41% vs. men 16%).
Messaging service WhatsApp is popular among
Latinos in the United States – 49% of Hispanics
report that they are WhatsApp users, compared
with 14% of whites and 21% of blacks.
Overlap in platform use. E.g., roughly three-
quarters of both Twitter (73%) and Snapchat (77%)
users also use Instagram.

8. Misconception
People don’t want to read
about clinical research online.

9. The Digital Patient
Ref. Pew Internet Research. Social Media Usage: 2005-2015. Pew Research Center, October 2015.;
http://www.cdwcommunit.com/perspectives/expert-perspectives/todays-digital-patient/

10. Today’s Topics
1. Digital populations and social media platforms
2. Digital strategy approach, focus on social media
3. Social media and clinical research recruitment
4. Ethical and regulatory considerations
5. A word about effectiveness

11. Spoke-Hub Model
Leverage the Spoke-Hub Model
H U B
Your Study
Web Page
v
Online
Search

12. Example of Hub: Clinical Trial Web Page
Ref. http://clinicaltrials.keckmedicine.org

14. However, there is limited evidence. Testing will be required for
specific diseases, target populations and social media and other
digital platforms.
Hub: Registry
1. Social media as a tool for promoting and recruiting targeting hard-to-
reach and large segments of the populations
2. Previous work showed positive impact of Facebook and Google
advertising resulting in efficient enrollment of individuals with rare
disease (Johnson et al., Evaluation of participant recruitment methods to a rare disease online registry. Am J
Med Genet A. 2014 Jul;164A(7):1686-94. doi: 10.1002/ajmg.a.36530.)

15. Trial Promoter: A Tool to Study Social Media
Driven Communication Approaches
Visit:
Reuter et al. Trial Promoter: A Web-Based Tool for Boosting the Promotion of Clinical Research
Through Social Media. J Med Internet Res 2016;18(6):e144. DOI: 10.2196/jmir.4726.

16. Today’s Topics
1. Digital populations and social media platforms
2. Digital strategy approach, focus on social media
3. Social media and clinical research recruitment
4. Ethical and regulatory considerations
5. A word about effectiveness

17. Passive vs. Active Recruitment
“Distributing recruitment
materials (ads, posters, flyers)
with the aim of attracting
potential participants to contact
the research team for more
information and for
consideration of enrollment.”
PASSIVE RECRUITMENT ACTIVE RECRUITMENT
“Occurs when research staff
members approach and
interact with specific
individuals with the aim of
enrolling them in research,
usually on the basis of
knowledge of characteristics
that would make them suit-
able candidates for particular
trials.”
Gelinas et al. (2017) Using Social Media as a Research Recruitment
Tool: Ethical Issues and Recommendations, The American Journal of
Bioethics, 17:3, 3-14,.

18. Social Media Listening/Monitoring
 Listen to ongoing conversations about the study disease or
related aspects to learn…
Who talks about the disease area?
What do they say?
Who are the influencers in the disease community?
Consider the voices of patients, physicians, disease advocates,
disease foundations, researchers, medical centers

19. The Disease Hashtag Project & Hashtag
Finder (Twitter)
https://www.symplur.com/healthcare-hashtags/diseases/

20. Example: Ankylosing spondylitis
https://www.symplur.com/search/Ankylosing+Spondylitis

21. Example: Ankylosing spondylitis
https://www.symplur.com/healthcare-hashtags/spondylitis/

22. Insights from Twitter Data for the U.S.
Example analysis
Source: Symplur

23. Who is Talking?
Example analysis
Source: Symplur

24. Who is Talking?
Example analysis
Source: Symplur

25. Tweet Transcripts
https://www.symplur.com/healthcare-hashtags/spondylitis/

26. Word Analysis
Example analysis
Source: Symplur

27. Languages
Example analysis
Source: Symplur

28. Tool Example: Social Mention
Ref. http://www.socialmention.com/

29. User Conversations Across Platforms
http://www.socialmention.com/search?t=all&q=ankylosing+spondylitis&btn
G=Search

30. Promoting Clinical Research Digitally
Digital platform Organic Advertising
Twitter Yes No
Facebook Yes Yes (Approval required)
Youtube Yes Yes (Approval required)
Pinterest Yes No
Instagram Yes Yes (Approval required)
Google Search Yes Yes (Approval required)
Wordpress Yes Yes (Approval required)
Tumblr Yes Yes (Approval required)
Limited overview
Based on platform posting guidelines, Aug 2017

31. Digital Information about
Clinical Studies: Checklist
 The creator of digital/social media content is responsible for it.
 Abide by institution’s media guidelines.
 Ensure that the study sponsor is informed of your digital/social
media activity.
 Refrain from providing significant details of any clinical study –
focus on basic study information. Suggestion: Link digital media
content to study page with more information
 Beware of proprietary information.
C H E C K L I S T

32.  Avoid making claims of treatment efficacy or side effects. Use
disclaimers to reduce risk.
 Avoid disclosure of preliminary results or non-public information.
 Bloggers involved in the study should not write about trial or
drug, device, or treatment (could be viewed as advertising).
 Avoid using social media for eligibility screening, refer to
institution and study team.
Digital Information about
Clinical Studies: Checklist C H E C K L I S T

33.  State new treatment, drug, device as investigational/in testing.
 Avoid coercion, the practice of persuading someone to do something
by using force or threats.
 Don’t imply favorable outcomes or post claims regarding safety,
e.g., better treatment, better chances to be cured, safe treatment.
 Don’t promise free medical treatment.
 Don’t emphasize payment for participants, e.g., participants may be
compensated for their time
Digital Recruitment Messages
FDA and IRB Guidelines Apply C H E C K L I S T

34. Today’s Topics
1. Digital populations and social media platforms
2. Digital strategy approach, focus on social media
3. Social media and clinical research recruitment
4. Ethical and regulatory considerations
5. A word about effectiveness

35. Ethical & Regulatory Considerations
• Federal and state laws govern social media recruitment
activities
• Lack of specific regulatory guidance
• IRBs may or may not have policies on social media
recruitment
• Among existent policies there is no clear consensus
Challenge: Social media requires applying legal and ethical
norms sensitively in a context that may be unfamiliar to
investigators and IRBs.

36. Tools to Navigate IRB Submissions Including
Social Media Recruitment

37. Managing Active Study Participants
 Help them understand that sharing details about their participation
online can …
 distort the results of the study and essentially cause the trial to fail,
 influence how other people perceive or report their own symptoms,
making it hard to tell whether a given drug or treatment is working,
 unblind the study, i.e., if neither the participants nor the clinical trial site
team knows who is on an active drug or a placebo, some participants may
be taking a placebo. Information you share could lead them to report
symptoms that they are not actually experiencing, and
 be misinterpreted by the public, journalists and others.

38. Template Language (Part 1)
 Do discuss your experience confidentially with your
family and other people who are close to you.
 Do talk with your family doctor and other healthcare providers. It’s
important to let them know that you are in a clinical trial.
 Do ask your clinical trial team to provide guidance about where to
obtain reliable educational material online.
 Do keep a journal or take notes on your cell phone so you can make a
list of things to talk about with your clinical trial doctor and study team at
your clinical trial.
C H E C K L I S T

39. Template Language (Part 2)
 Don’t talk publicly, including online, about your
participation in a clinical trial.
 Don’t post online including on social media about your experience in the
trial, including about side effects or about how you think the drug is working.
 Don’t solicit trial advice or information from online friends or people
other than the primary investigator and study team at your clinical trial site.
 Don’t respond to questions or comments online related to the trial
you’re involved in.
 If you do see study-related posts online, please tell the study team.
C H E C K L I S T

40. Today’s Topics
1. Digital populations and social media platforms
2. Digital strategy approach, focus on social media
3. Social media and clinical research recruitment
4. Ethical and regulatory considerations
5. A word about effectiveness

41. Social Media Effectiveness

42. Trial Promoter: A Tool to Study Social Media
Driven Communication Approaches
Visit:
Reuter et al. Trial Promoter: A Web-Based Tool for Boosting the Promotion of Clinical Research
Through Social Media. J Med Internet Res 2016;18(6):e144. DOI: 10.2196/jmir.4726.

43. Contact Information
Email: katja.reuter@usc.edu
Twitter: @dmsci
Blog: https://digitalmediaandscience.wordpress.com
Katja Reuter, PhD