In collaboration with Audun Utengen and Thomas Lee from Symplur LLC, we explore the usage of digital and social media data to inform research in novel ways and discover emerging health trends, disease communities and outreach mechanisms. This presentation is part of the Digital Scholar Training Series at USC and CHLA. Learn more about the initiative: http://sc-ctsi.org/digital-scholar/ News story: http://sc-ctsi.org/index.php/news/new-digital-scholar-training-initiative-helps-researchers-better-utilize-we#.VDhIWWK9mKU

1. Utilize Digital & Social
Media Data to Inform
Your Research
Workshop 4 of the Digital Scholar Training Series
Katja Reuter1, PhD; Audun Utengen2, MBA; Thomas Lee2, BS, NHA
1Southern California Clinical and Translational Science Institute (SC CTSI) at the University of Southern
California and Children's Hospital Los Angeles
2Symplur LLC, a healthcare social media consultancy

2. Today’s Goals
1. Understand how to use social media data
in support of research and study participant
recruitment
2. Understand how to use Symplur Signals

3. Workshop Outline
Introduction: Web-Based Disease
Communities, PHI, Online Recruitment,
Online Consent
Using Social Media Data from Twitter
The Healthcare Hashtag Project
Using Symplur Signals

4. The Opportunity
R e s e a r c h p r o f e s s i o n a l s a r e a b l e t o …
…learn about
emerging health/
disease topics
…identify active
online disease
communities &
start a dialogue
…identify, and
engage/recruit
potential research
participants
ON L IN E
U s e r s S e a r c h , V i e w , a n d C o n t r i b u t e O n l i n e

5. Internet and Social Media Usage
 80%+ of Americans seek health information online
 Nearly 70% of all Internet users in the U.S. use
(Pew Research Center, 2013, 2014)
digital and social media
 40% of 18-29 year old African Americans who use
the Internet say that they use Twitter
 Latinos go online from mobile devices and use
social networking sites at similar – and sometimes
higher – rates than do other Americans

6. L.A. County
Medical
Enterprise
Research
Enterprise
Internet/Web
Social Media
Mobile Technologies

7. L.A. County – Digital Divide
Medical
Enterprise
Research
Enterprise
Internet/Web
Social Media
Mobile Technologies
CAVEAT: DIGITAL DIVIDE
>35% of Angelenos either do not have
access to broadband or cannot afford it.
BUT: High Penetration of mobile
technologies among low-income
and underserved populations (e.g.,
more than 75% of Latinos).
89% of U.S. Hispanics log on to
Facebook every day, 78% via mobile
device (US Hispanics and Facebook, The
Generation of Growth, 2014)

8. L.A. Users on Twitter
June 2012 - Oct 2014
13,372 users that self-identified
as located in Los
Angeles
Sent 35,295 messages on
Twitter using the word
“diabetes”
In more than a dozen
languages, including English,
Spanish, Tagalog, Haitian, Korean,
and Vietnamese
(Symplur Signals database)

9. Data Source: Twitter
https://blog.twitter.com/2014/introducing-twitter-data-grants

10. http://www.socialwebcafe.com/wp-content/
uploads/2014/07/teksocialAnatomyofTweet.png

11. Research Studies that Successfully
Leverage Digital Data
Group 1
Q u e s t i o n s
How did they engage research participants?
What did they ask participants to do?
How long did they recruit?
Describe the online consent method.
Group 2
Describe the digital data the research team
used.
What did they learn?

12. Online Data Usage in Research
Things to keep in mind…
 Protected health information (PHI)
 De-identification Vs. Anonymization

13. Online Recruitment
Things to keep in mind…
1. The creator of a social media page is responsible for the content.
Link to site with more information (Institutional Clinical Trials Dircetory or
ClinicalTrials.gov)
2. Abide by institution’s media guidelines
3. Consult IRB (meet institutional and state definitions of advertising)
4. Refrain from providing significant details of any trial – focus on
basic study information
5. Beware of proprietary information
6. Avoid making claims of treatment efficacy or side effects. Use
disclaimers to reduce risk.
7. Establish monitoring mechanism to protect against HIPAA violations
and inappropriate posting
8. Avoid disclosure of preliminary results or non-public information
9. Bloggers involved in study conduct should not write about trial or
drug (could be viewed as advertising)
http://www.ncbi.nlm.nih.gov/pubmed/24857086

14. Online Consent & Signatures
Things to keep in mind…
 In minimal risk research, requires IRB approval
 Office of Human Research Protections (OHRP): “If properly obtained, an
electronic signature can be considered ‘original’ for the purposes of
recordkeeping.”
 Federal Electronic Signatures in Global and National Commerce Act
(eSIGN) and California’s Uniform Electronic Transactions Act (UETA):
Require that subjects agree to use the electronic format (by clicking a
“You agree” icon) and that subjects be informed about their rights to
obtain the electronic consent in non-electronic form and a description
of any procedures that must be followed to withdraw their agreement
to use an electronic record.
 FDA-regulated: Electronic documents would be subject to a specialized
set of requirements found at 21 CFR Part 11.

15. Symplur
A healthcare social media consultancy, creator of “The Healthcare
Hashtag Project”
Audun Utengen, MBA,
Co-founder, Symplur
LLC
Thomas Lee, BS, NHA,
Co-founder, Symplur
LLC

16. The Start of a Healthcare Communications Revolution
 2006 - Twitter Created
 2007 - First use of hashtags on Twitter
 2009 - First healthcare related tweet chat - #hcsm
 2010 - The Healthcare Hashtag Project started

17. The Healthcare Hashtag Project
 A structured organization of healthcare social media
 An open social project
 Millions of tweets – thousands of untold stories

18. The Rise of Patient Communities on Twitter
 22 month study
 100 million tweets
 A surprise discovery
http://www.symplur.com/shorts/the-rise-of-patient-
communities-on-twitter-visualized/

19. The Dynamics of a Twitter Patient Community
 A look at a Rheumatoid Arthritis community - #rheum
 Dynamic network centrality
analysis
 1 month timeline
http://www.symplur.com/shorts/dyna
mics-twitter-patient-community-network-
centrality-analysis/

24. The True Audience of Healthcare Conferences
 3,190 healthcare conferences in the database
 The physical attendees VS. the whole audience
 Dissemination of healthcare information

27. A Dive into Healthcare Social Media
 Very high growth: 1M tweets a day
 Types of hashtags:
 Tweet Chats: 377
 Diseases: 390
 Conferences: 3,190
 Others: 1,402
Demo: http://www.symplur.com/healthcare-hashtags/

28. Where and How to Find Digital and Social Media Data?
 Public VS. Private Social Networks
 Platform APIs
 Aggregate sources:
 Gnip
 Datasift
 Analytics Providers (1,000+)
 Most well known: Radian6 (Salesforce)
 Symplur Signals only one healthcare focused

29. Open Social Network Data
 Twitter
 Tumblr
 Foursquare
 WordPress
 Disqus, Intensedebate

30. Partly-Open Social Network Data
 Facebook
 Instagram
 Flickr
 Google+
 YouTube, Vimeo

31. Limitations of Digital Data
 Biases
 Population adoption of networks
 Personal Identity (Facebook VS. Twitter)
 Functional Identity (Doctors VS. Patients)
 Patient role (open VS private, job-to-be-done of
network)
 Historic access

32. Symplur Signals
 Requests for research and
data
 A treasure trove of insights
and stories
 3rd parties need access

33. Symplur Signals Data
 Not only 5,000+ healthcare hashtags
 10,000+ healthcare topics
 Thousands of high impact stakeholders
 doctors
 pharma
 hospitals
 Drug names, infectious disease terms, etc.

34. Example Insights to Extract:
 What are the top healthcare articles being shared by
Radiation Oncologists this week?
 Who are the most influential bloggers that are talking
about statin drugs?
 When has the topic of “flu” begun to trend and peak
over the last two years?
 What are the trending topics today in the Diabetes
communities?

35. Symplur Signals Demo: Diabetes
http://signals.symplur.com

36. Symplur Signals Hands-On Training
http://signals.symplur.com
Try It!

37. 30-Minute Individual Consulting Session
Start the process by contacting us at:
www.symplur.com/contact/

38. Contact Us
SC CTSI | www.sc-ctsi.org
Phone: (323) 442-4032
Email: info@sc-ctsi.org
Twitter: @SoCalCTSI
Symplur LLC | http://www.symplur.com
Twitter: @symplur
Audun Utengen, MBA: @audvin
Thomas M. Lee, BS, NHA: @tmlfox