Creating a National Evidence Base for Health Communication & Informatics

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

6. Control its Behavior Detect and Eradicate its Presence Avert or Delay its Onset Opportunities for Intervention Death Due to Cancer 2004 2015 Life Span Natural Death Birth

7. Opportunities for Communication • Preventing Metastasis • Maintenance (Chronic) • Chemoprevention • Early Detection • Informational Control • Informed Rx Decision • Access to Treatment • Diet/Exercise • Risk Reduction • Risk Identification Control its Behavior Detect and Eradicate its Presence Avert or Delay its Onset 2004 2015 Life Span Natural Death Birth

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

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

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

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

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

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

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

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

19. Expand Framework to Accommodate New Media Attributes

20. Timing: 65 Minutes Initial Set of Constructs

21. Conducted Extensive Pre-testing

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

23. Streamlined Coverage: 30+ Minutes

24. Data Sharing andDissemination

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

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

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

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

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

31. HINTS II and Beyond

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

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

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

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

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

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?

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