Wen-ying Sylvia Chou, PhD, MPH

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Engaging the cancer control community through
social media
Wen-ying Sylvia Chou, PhD, MPH Health
Communication and Informatics Research
Branch Behavioral Research Program Division of
Cancer Control and Population Sciences National
Cancer Institute May 19, 2011
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Outline

• Cancer control and health communication research
  and practice at the NCI
• Surveillance and evidence base on social media
  use Data from the Health Information National
  Trends Survey (HINTS)
• Examples of NCIs current informatics and social
  media-based communication efforts
• Towards the goal of transparency and effective
  communication about health future goals and
  funding opportunities

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DCCPS Cancer Co
MISSION Reduce the risk, incidence, and deaths
from cancer and enhance the quality of life for
cancer survivors an integrated program of
behavioral, epidemiologic, genetic, social, and
surveillance research.
Reducing the cancer burden
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Defining Social media

• Functions of social media and motivations for use
• Information exchange
• Sharing in participative media
• Self expression
• Entertainment and amusement
• Social support

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Web 2.0 changes in communication Key measures

• Internet penetration (69-75 adults1, 2)
• Broadband adoption (662)
• Mobile technologies (82 2),
• Social networking participation (23 of Internet
  users1)
• Health information seeking online (80 of
  Internet users2)
• Health-related Internet use3

1Chou, WS et al. 2009. Social Media Use in the
US Implications for health communication, J Med
Internet Res, 1(4) e48. 2 Pew Internet and
American Life Project 3Chou, WS et al. 2011.
Health-related Internet Use among Cancer
Survivors Data from Health Information National
Trends Survey, 2003-2008. Journal of Cancer
Survivorship.
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Chou, WS et al. 2009. Social Media Use in the US
Implications for health communication, J Med
Internet Res, 1(4) e48.
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Chou, WS et al. 2009. Social Media Use in the US
Implications for health communication, J Med
Internet Res, 1(4) e48.
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Chou, WS et al. 2009. Social Media Use in the US
Implications for health communication, J Med
Internet Res, 1(4) e48.
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Social-networking site participation across
race/ethnicity groups
Variables in the model include age, gender,
education, race/ethnicity, self-described general
health and psychological distress, and personal
cancer experience.
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Some points to consider

• The digital divide may be narrowing
• Controlling for Internet access, social media is
  penetrating the US independent of education,
  race/ethnicity or health care access
• How to harness the power of social media to
  enhance communication for maintaining and
  improving health, individually and for all?

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Examples of NCI social media activities

• Cyberinfrastructure and health systems
• Engaging the research community
• GEM, HINTS-GEM
• Engaging individuals with health communication
• Smokefree.gov
• Enabling multi-disciplinary and multi-sector
  collaboration
• Informatics for Consumer Health website and
  social media platforms

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Health informatics Cyberinfrastructure and
Health Systems
Abdul R. Shaikh, PhD, MHScBehavioral Scientist,
Program Director shaikhab_at_mail.nih.gov
Transformative Developments in National Health
(HITECH Act/ARRA and Affordable Care Act
meaningful use of HIT)

• 2011 special issues
• American Journal of Preventive Medicine
• Cyberinfrastructure for Consumer Health
• Translational Behavioral Medicine
• Informatics for Translational Behavioral
  Medicine

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Information Ecology
Applications for Consumer Health
Cyberinfrastructure (Grid and Cloud Computing)

• Established Data Sources
• Surveillance
• Research
• Administrative
• Medical
• Biological
• Genomic/proteomic
• Census
• Policy
• Emerging Data Platforms
• - EHRs/PHRs
• Mobile devices
• Sensors GIS
• Data.gov
• Web 2.0 (blogs/ microblogs/wikis, video/photos,
  social networks, PHRs,)

• Apps
• Widgets
• EHRs
• PHRs
• Dashboards
• Medical devices technologies

Middleware and Common Vocabularies
Portal
Re-Entry into the Information Ecology
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Grid Enabled Measures (GEM) as an example of
science 2.0 in NCIS behavioral research program

• https//www.gem-beta.org
• Overall Goals
• To facilitate a virtual community of scientists
  using collaborative web technology to vet and
  promote the use of shared measures based on
  theoretically-meaningful constructs
• GEM enables a community of researchers to
  collaborate and catalyze scientific progress in
  their field of study

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• The Grid Enabled Measures (GEM) database provides
  an excellent solution for improving HINTS IV
  development
• Using participatory and transparent measure
  development process to build the next iteration
  of HINTS
• Engaging the scientific community in
• Propose new Constructs and items for HINTS
• Comment on and rate Constructs and items
• Keep a community of researchers informed about
  HINTS

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The HINTS-GEM Measure Tab

• Drill down on an item to see metadata and to
  comment on/rate an item
• You can use the Measure tab to
• Comment on items
• Rate items
• Propose new items

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Lessons Learned

• You mean ANYONE can add an item?
• The benefits of a phased approach
• Transparency of process
• Variations in permissions
• Usability and flexibility of the interface
• Incentives to participate, reinforcements to
  maintain engagement

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Women.Smokefree.gov

• Reach and engage women smokers
• Disseminate tailored smoking cessation content
• Increase quit attempts
• Build motivation
• Build self-efficacy
• Support quit attempts
• Skills training
• Relapse prevention
• Social support

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Social Media Web 2.0
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FAN PAGE
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YouTube Video Contest

• Campaign promotion
• Publicize, increase awareness
• Drives traffic to the main website
• Audience engagement
• Primary and secondary audience
• Share contest announcement video
• Participate in the voting stage
• User-generated content

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Strategizing the next steps
Women Who Quit

• Social media platforms can be leveraged to
  enhance cessation efforts
• Minimize misinformation
• Create a supportive environment
• Drive traffic to women.smokefree.gov
• Actively influence online conversations
• Identify key influencers
• Further analysis of social media content

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Small Business Innovation Research awards

• SBIR Cooperative Agreement Innovative Solutions
  for Consumer Health Information Technology A
  Business Collaboration U44
• A collaboration with AHRQ and NIST to promote
  evidence-based, user-centered applications that
  meet the objectives of ONCs meaningful use
  document.
• SBIR Product Directory http//sbir-cancercontrol
  .cancer.gov/sbir/publicHome.do
• A searchable database of research findings and
  descriptions of 94 products showcased between
  2000-2008.

Contact Abdul Shaikh or Connie Dresser
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Social Media Health Communication Developing a
FOA

• Impetus
• Congressional mandate The House/Senate
  Appropriations Committee encourages the NIH to
  fund research on how social media can be used to
  promote health behaviors and social support
• Recent scientific discoveries on the health
  impact of technology-mediated social
  participation
• Priority area in the Behavioral Research Program
  and state of the science in cancer communication
• Strategic planning
• Clinical implications balanced with rigorous
  science

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Areas to highlight in the concept

• Rethinking the health communication context (NOT
  about the new technologies but the broader
  communication environment)
• Impact of social media (naturally-occurring or
  interventions) on behavior related to cancer
  control and prevention
• Cancer disparities and the Digital Divide
• Utilization of new assessment methods measures
  of engagement and outcomes
• Network analysis, mixed methods, systems sciences
• Implications for health communication program
  planning

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Thank you!Sylvia Chou (chouws_at_mail.nih.gov)