Wen-ying Sylvia Chou, PhD, MPH Health Communication and Informatics Research Branch

1. 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

2. 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 NCI’s current informatics and social media-based communication efforts • Towards the goal of transparency and effective communication about health: future goals and funding opportunities

3. 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

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

5. Web 2.0 changes in communication: Key measures • Internet penetration(~69-75% adults1, 2) • Broadband adoption(~66%2) • 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.

7. Chou, WS et al. 2009. Social Media Use in the US: Implications for health communication, J Med Internet Res, 1(4): e48.

8. Chou, WS et al. 2009. Social Media Use in the US: Implications for health communication, J Med Internet Res, 1(4): e48.

9. Chou, WS et al. 2009. Social Media Use in the US: Implications for health communication, J Med Internet Res, 1(4): e48.

10. 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.

12. 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?

13. 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

14. Health informatics: Cyberinfrastructure and Health Systems Abdul R. Shaikh, PhD, MHScBehavioral Scientist, Program Director shaikhab@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”

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

16. Grid Enabled Measures (GEM) as an example of science 2.0 in NCI’S 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

17. 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

18. 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

19. 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

20. 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

22. Social Media & Web 2.0

23. FAN PAGE

24. 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

25. Strategizing the next steps WomenWhoQuit • 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

27. 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 ONC’s 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

28. 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

29. 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

30. Thank you!Sylvia Chou (chouws@mail.nih.gov)