1. Creating a National Evidence Base for Health Communication & Informatics HINTS Data Users Meeting January 20-21, 2005

2. History and Vision

3. The Way it Has Often Been …

4. But Stakes are High

5. Natural Death Birth Susceptibility Pre-initiation Malignant Transformation Evolution/ Progression Lethal Phenotype Life Span Death Due to Cancer Cancer Burden The Cancer Process

6. Natural Death Birth Life Span Death Due to Cancer Avert or Delay its Onset Detect and Eradicate its Presence Control its Behavior 20042015 Opportunities for Intervention

7. Natural Death Birth Life Span 20042015 Avert or Delay its Onset Detect and Eradicate its Presence Control its Behavior Diet/Exercise Risk Reduction Risk Identification Early Detection Informational Control Informed R x Decision Access to Treatment Preventing Metastasis Maintenance (Chronic) Chemoprevention Opportunities for Communication

8. Traditional Channels Natural Death Birth Life Span Avert or Delay its Onset Mass Media Population “Targeting” Community Intervention Diet/Exercise Risk Reduction Risk Identification

9. Amplifying Capacity Natural Death Birth Life Span Avert or Delay its Onset Diet/Exercise Risk Reduction Risk Identification “Psychographic” push Message tailoring Personal health technologies Genomic risk assessment

10. Traditional Channels Natural Death Birth Life Span Avert or Delay its Onset Diet/Exercise Risk Reduction Risk Identification Detect and Eradicate its Presence Early Detection Informational Control Informed R x Decision Access to Treatment Breast Cancer Awareness Awareness Campaigns Patient Provider Interaction

11. Amplifying Capacity Natural Death Birth Life Span Avert or Delay its Onset Diet/Exercise Risk Reduction Risk Identification Detect and Eradicate its Presence Early Detection Informational Control Informed R x Decision Access to Treatment Online resources Personal health record Access to care

12. Traditional Channels Natural Death Birth Life Span Avert or Delay its Onset Diet/Exercise Risk Reduction Risk Identification Detect and Eradicate its Presence Early Detection Informational Control Informed R x Decision Access to Treatment Preventing Metastasis Maintenance (Chronic) Chemoprevention Control its Behavior Paper-Based Medical Records

13. Amplifying Capacity Natural Death Birth Life Span Avert or Delay its Onset Diet/Exercise Risk Reduction Risk Identification Detect and Eradicate its Presence Early Detection Informational Control Informed R x Decision Access to Treatment Preventing Metastasis Maintenance (Chronic) Chemoprevention Control its Behavior Electronic Medical Records Personal Monitoring

14. Experts Recommend National Surveillance Program To monitor changes in health information environment over time To explore usage across channels and sources nationally To combine channel usage with knowledge, attitudes, behaviors To build an evidence base for planners, administrators, communicators, practitioners, and policy makers

15. HINTS I: Construction & Operations

16. Measure Knowledge, Attitudes, Behavior

17. Marker Items From Other National Surveys Measure Knowledge, Attitudes, Behavior

18. Measure Attributes of New Media Demassified Decentralized Interactive Adaptable Connected

19. Expand Framework to Accommodate New Media Attributes

20. Initial Set of Constructs Timing: 65 Minutes

21. Conducted Extensive Pre-testing

22. Screener Health Communication Internet Users Cancer Information Seekers Cancer History General Cancer Knowledge Cancer Related Behaviors Tobacco Alcohol Fruits/Veg. Exercise Height/Weight Health Status Demographics Colon * Prostate * Skin † Men 45+ Prostate * Skin † Men 35-44 Skin † Men 18-34 Colon * Breast * Cervical † Skin † Women 45+ Breast * Cervical † Skin † Women 35-44 Cervical † Skin † Women 18-34 Reduced, Reworked Structure

23. Streamlined Coverage: 30+ Minutes Category and Topic Area # of Questions Household Screener11 Health Communication34 Cancer History/General Cancer Knowledge 16 Cancer-Specific Risk / Screening Colon cancer Breast cancer Cervical cancer Prostate cancer 28 13 5 8 Primary Cancer Risk Behaviors29 Health Status and Demographics14 Total number of survey questions: 158

24. Data Sharing and Dissemination

25. Dissemination Data Users (Richard Moser) Clean, prepare data for dissemination Conduct internal research on NCI priorities Release data set to extramural community Support scientific publication & research Results Users (Kelly Blake) Coordinate with NCI Office of Communication Conduct needs analysis (APHA) Produce information products Distribute to targeted audiences

26. Data Sharing Posted data for download, Feb. 2004 http://cancer.gov/hints/ HINTS Database SAS, SPSS

27. Data Sharing Posted data for download, Feb. 2004 Posted technical documentation http://cancer.gov/hints/

28. Data Sharing Posted data for download, Feb. 2004 Posted technical documentation Hosting data users conference, Jan. 2005 http://cancer.gov/hints/

29. Creating Informatics Support for Public & Researchers HINTS Database SAS, SPSS How many hours do Americans watch Television?

30. Working with Results Users How can I use findings to communicate to the public better? Creating Knowledge Products

31. HINTS II and Beyond

32. Source: Hiatt & Rimer (1999) NCI Strategic Framework

33. Goal: Retain 50% of Survey for Surveillance Purposes Source: Hiatt & Rimer (1999)

34. Goal: Dedicate Remaining Space to New Research Ideas Media Exposure, Seeking/Scanning Lay Models of Cancer Social Support, Health Disparities

35. Goal: Offer Complement to Laboratory Science Source: Hiatt & Rimer (1999)

36. Goal: Monitor Effects of New Communication Media Source: Hiatt & Rimer (1999) Attributes Demassified Decentralized Interactive Adaptable Connected

37. Goal: Advance Methods & Science Relevant to New Media Total Survey Error: ε  coverage ε  sampling ε  response rates ε  measurement

38. Goal: Use Informatics Approach to Enable “Big Science”

39. Dates to Remember Feb. 14, 2005: H2 in field Sept. 30, 2005: Data delivered to NCI Oct. 1, 2005: H3 development begins March 30, 2006: Public release H2 May 1, 2006: H3 frozen

40. Have We Enabled Behavior? Tell me how much you agree or disagree with the following statements Strongly Agree Somewhat Agree Somewhat Disagree Strongly Disagree “It seems like almost everything causes cancer.” 11%40%31%18% “There’s not much people can do to lower their chances of getting cancer.” 6%22%36% “There are so many different recommendations about preventing cancer, it’s hard to know which ones to follow.” 36%41%15%9%

41. The NCI 2015 challenge goal: … eliminate death and suffering due to cancer “When I look into the eyes of a patient losing the battle with cancer, I say to myself, It doesn’t have to be this way.” Dr. A.C. von Eschenbach, M.D. Director, National Cancer Institute The Nation’s Investment in Cancer Research (2003)

42. For More Information: http://cancer.gov/hints hesseb@mail.nih.gov