# Presentation: 438985

## 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 ...

**The Way it Has Often Been ...**

## But Stakes are High

## The Cancer Process

**Natural Death**

**Birth**

**Susceptibility**

**Pre-initiation**

**Malignant Transformation**

**Evolution/**
**Progression**

**Lethal Phenotype**

**Life Span**

**Death Due to Cancer**

**Cancer Burden**

**The Cancer Process**

**Notes:**
50–75% of cancer mortality in the United States can be attributed to external, nongenetic factors, most of which are related to human behaviors such as tobacco use, overuse of alcohol, improper diet, lack of physical activity, overexposure to sunlight, and sexual activity leading to exposure to certain viruses (5–7).

## Opportunities for Intervention

**Natural Death**

**Birth**

**Life Span**

**Death Due to Cancer**

***2004***

***2015***

**Opportunities for Intervention**

**Notes:**
cancer deaths go from 79.6 per 100,000 in 1900 to a peak of 135.0 per 100,000 in 1990 and, since then, an annual decrease of 0.6% to 127.9 in 1996.
During this period, decreases in mortality rates have been noted for cancers of the lung, pancreas, brain, and prostate in men, for breast and cervical cancers in women, and for cancers of the colon/rectum and stomach in both men and women (22).

## Opportunities for Communication

**Natural Death**

**Birth**

**Life Span**

***2004***

***2015***

***Avert or Delay its Onset***

***Detect and Eradicate its Presence***

***Control its Behavior***

- Diet/Exercise
- Risk Reduction
- Risk Identification

- Early Detection
- Informational Control
- Informed Rx Decision
- Access to Treatment

- Preventing Metastasis
- Maintenance (Chronic)
- Chemoprevention

**Opportunities for Communication**

## Traditional Channels

**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

**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

**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 Rx Decision
- Access to Treatment

- Awareness Campaigns
- Patient Provider Interaction

## Amplifying Capacity

**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 Rx Decision
- Access to Treatment

- Online resources
- Personal health record
- Access to care

## Traditional Channels

**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 Rx Decision
- Access to Treatment

- Preventing Metastasis
- Maintenance (Chronic)
- Chemoprevention

***Control its Behavior***

- Paper-Based
- Medical Records

## Amplifying Capacity

**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 Rx 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

**Measure Knowledge, Attitudes, Behavior**

## 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

## Conducted Extensive Pre-testing

## Reduced, Reworked Structure

- Health
- Communication

- Internet Users

- Cancer Information
- Seekers

- _Cancer Related_
- _ __Behaviors_
-  Tobacco
-  Alcohol
-  Fruits/Veg.
-  Exercise
-  Height/Weight

** ****Colon ***
-  **Prostate ***
-  Skin†

- Men 45+

-  **Prostate ***
-  Skin †

- Men 35-44

-  Skin †

- Men 18-34

**Breast ***
- Cervical †
- Skin †

- Women 35-44

- Cervical †
- Skin †

- Women 18-34

**Reduced, Reworked Structure**

## Streamlined Coverage: 30+ Minutes

**Streamlined Coverage: 30+ Minutes**

| Category and Topic Area | # of Questions |
| --- | --- |
| Household Screener | 11 |
| Health Communication | 34 |
| 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 Behaviors | 29 |
| Health Status and Demographics | 14 |
| Total number of survey questions: | 158 |

## Data Sharing andDissemination

## 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. 2004

- http://cancer.gov/hints/

## Data Sharing

- Posted data for download, Feb. 2004
- Posted technical documentation

- http://cancer.gov/hints/

## Data Sharing

- Posted data for download, Feb. 2004
- Posted technical documentation
- Hosting data users conference, Jan. 2005

- http://cancer.gov/hints/

## 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?

## HINTS II and Beyond

## NCI Strategic Framework

**NCI Strategic Framework**

## Goal: Retain 50% of Survey for          Surveillance Purposes

**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

**Goal: Offer Complement to****           Laboratory Science**

***Source: Hiatt & Rimer (1999)***

## Goal: Monitor Effects of New          Communication Media

**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% | 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)

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