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

History and Vision

The Way it Has Often Been …

But Stakes are High

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

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

Natural Death Birth Life Span 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

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

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

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

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

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

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

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

HINTS I: Construction & Operations

Measure Knowledge, Attitudes, Behavior

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

Measure Attributes of New Media Demassified Decentralized Interactive Adaptable Connected

Expand Framework to Accommodate New Media Attributes

Initial Set of Constructs Timing: 65 Minutes

Conducted Extensive Pre-testing

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 Skin † Men Colon * Breast * Cervical † Skin † Women 45+ Breast * Cervical † Skin † Women Cervical † Skin † Women Reduced, Reworked Structure

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 Primary Cancer Risk Behaviors29 Health Status and Demographics14 Total number of survey questions: 158

Data Sharing and Dissemination

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

Data Sharing Posted data for download, Feb HINTS Database SAS, SPSS

Data Sharing Posted data for download, Feb Posted technical documentation

Data Sharing Posted data for download, Feb Posted technical documentation Hosting data users conference, Jan

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

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

HINTS II and Beyond

Source: Hiatt & Rimer (1999) NCI Strategic Framework

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

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

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

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

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

Goal: Use Informatics Approach to Enable “Big Science”

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

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%

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)

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