Utilize Digital and Social Media Data for Your Research

Today, over 80 percent of Americans seek health information online and nearly 70 percent of all Internet users in the United States use digital and social media. These numbers are increasing, even among diverse and underserved populations. This trend provides huge opportunities for researchers.

For example, did you know that African Americans have exhibited relatively high levels of Twitter use? Fully 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. And, around 81% of lower-income Americans say it is "very important" for the library to provide free access to the Internet and computers? (Pew Research Center, 2013, 2014)

Attendees of this workshop will learn how the general public, disease communities, and health care professionals use the Web and social media. They will learn about the potential and limitations of using the resulting ‘digital traces’ to inform their research and how to design data-driven online outreach strategies to achieve their research goals (e.g., engagement, enrollment).

You will also get access to Symplur Signals, an online application that provides more than 500 million healthcare-related tweets and 185 million user profiles from Twitter, all segmented by thousands of healthcare relevant topics.

The Symplur team will offer a free 30-minute explorative consulting session to each participant tailored to how their own research can leverage social media data.

Instructors

• Audun Utengen, MBA, Co-founder of Symplur, a healthcare social media consultancy, LLC and “The Healthcare Hashtag Project
• Thomas Lee, BS, NHA, Co-founder of Symplur
• Katja Reuter, PhD, director of the electronic eHome program and Digital Strategies, Southern California Clinical and Translational Science Institute (SC CTSI)

1. Digital and Social Media Data

• Why use digital and social media as part of your research?
• Understand how to use social media data in support of research and study participant recruitment
• Understand how the general public, disease communities, and health care professionals use the Web and social media

2. Data Source: Twitter

• Understand what Twitter user data is available
• Understand the anatomy of a Twitter messages (tweet)
• Analyze research studies that have successfully leveraged digital data

3. Online Data Usage in Research

• Understand limitations: Protected health information (PHI), de-identification vs. anonymization, online recruitment guidelines, online consent

4. HealthCare Social Media

• The Healthcare Hashtag Project
• Understand where and how to find digital and social media data?
• Limitations of digital data

5. Introduction to Symplur Signals

• Understand what research questions you can answer using Symplur Signals
• Learn how to leverage Symplur Signals to analyze over 500 million healthcare social media data points in real time
• Identify relevant healthcare communities on Twitter and learn how to seek out top influencers of all stakeholder types (providers, patients, etc.)
• Understand the dynamics of each community from content analysis and network centrality analysis of the relationships

Usage of digital and social media

• Closing the Digital Divide: Latinos and Technology Adoption, by Mark Hugo Lopez et al.
• US Hispanics and Facebook: The Generation of Growth, by Adam Rodriguez at EC Hispanic Media
• Technology Adoption by Lower Income Populations, by Aaron Smith, Pew Research
• African Americans and Technology Use, by Aaron Smith, Pew Research
• Older Adults and Technology Use, by Aaron Smith, Pew Research
• Tweeting about pain: Comparing self-reported toothache experiences with those of backaches, earaches and headaches, by Ahlwardt et al.
• 5 Mins of u is better than dealing with cancer 4 a lifetime”: An exploratory qualitative analysis of cervical and breast cancer screening dialogue on Twitter, by Lyles et al.
• Empowering patients through social media: the benefits and challenges, by Househ et al.
• e-Patients in Twitter Hashtag Communities, by Harmel M et al.
• Social media in radiology: early trends in Twitter microblogging at radiology's largest international meeting, by Hawkins CM et al.
• International Urology Journal Club via Twitter: 12-Month Experience, by  Isaac A. Thangasamy et al.
• Impact of social media on a major international emergency medicine conference, by Neill A et al.

Digital and social data mining

• Twitter mining for fine-grained syndromic surveillance, by Velardi et al.
• Using social media for research and public health surveillance, by Eke
• Exploiting online discussions to discover unrecognized drug side effects, by Wu et al.
• A practical approach for content mining of Tweets, by Yoon et al.

Online Outreach and Participant Recruitment

• Social media in clinical trials, by Thompson et al.
• Can I get a retweet please? Health research recruitment and the Twittersphere, by O’Connor et al.
• A Cross-Sectional Study of Individuals Seeking Information on Transient Ischemic Attack and Stroke Symptoms Online: A Target for Intervention?, by Kim et al.

Ethical issues, FDA guidelines, Online consent

• Guidance for Industry: Internet/Social Media Platforms with Character Space Limitations— Presenting Risk and Benefit Information for Prescription Drugs and Medical Devices, by FDA