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

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

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

The Opportunity

…learn about

emerging health/

disease topics

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 …

…identify active

online disease

communities &

start a dialogue

…identify, and

engage/recruit

potential research

participants

O N L I N EU 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

Internet and Social Media Usage

80%+ of Americans seek health information online

(Pew Research Center, 2013, 2014)

Nearly 70% of all Internet users in the U.S. use

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

Medical

Enterprise

Research

Enterprise

Internet/Web

Social Media

Mobile Technologies

L.A. County

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.

L.A. County – Digital Divide

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)

L.A. Users on Twitter

June 2012 - Oct 2014

13,372 users that self-

identified as located in Los

Angeles

(Symplur Signals database)

Sent 35,295 messages on

Twitter using the word

“diabetes”

In more than a dozen

languages, including English,

Spanish, Tagalog, Haitian, Korean,

and Vietnamese

Data Source: Twitter

https://blog.twitter.com/2014/introducing-twitter-data-grants

http://www.socialwebcafe.com/wp-

content/uploads/2014/07/teksocialAnatomyofTweet.png

Research Studies that Successfully

Leverage Digital Data

Group 1

How did they engage research participants?

What did they ask participants to do?

How long did they recruit?

Describe the online consent method.

Q u e s t i o n s

Group 2

Describe the digital data the research team

used.

What did they learn?

Online Data Usage in Research

Things to keep in mind…

De-identification Vs. Anonymization

Protected health information (PHI)

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

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.

Audun Utengen, MBA, Co-founder, SymplurLLC

Thomas Lee, BS, NHA,Co-founder, SymplurLLC

SymplurA healthcare social media consultancy, creator of “The Healthcare Hashtag Project”

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

The Healthcare Hashtag Project

A structured organization of healthcare social media

An open social project

Millions of tweets – thousands of untold stories

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/

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/dynamics-twitter-patient-community-network-centrality-analysis/

The True Audience of Healthcare Conferences

3,190 healthcare conferences in the database

The physical attendees VS. the whole audience

Dissemination of healthcare information

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/

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

Open Social Network Data

Twitter

Tumblr

Foursquare

WordPress

Disqus, Intensedebate

Partly-Open Social Network Data

Facebook

Instagram

Flickr

Google+

YouTube, Vimeo

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

Symplur Signals

Requests for research and

data

A treasure trove of insights

and stories

3rd parties need access

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.

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?

Symplur Signals Demo: Diabetes

http://signals.symplur.com

Symplur Signals Hands-On Training

http://signals.symplur.com

Try It!

30-Minute Individual Consulting Session

www.symplur.com/contact/

Start the process by contacting us at:

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