Creating a National Evidence Base for Health Communication & Informatics

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

Natural DeathBirthBirth

SusceptibilityPre-initiation

Malignant Transformation

Evolution/Progression

Lethal Phenotype

Life Span

Death Due to Cancer

Cancer Burden

The Cancer Process

Natural Death

Natural DeathBirthBirth Life Span

Death Due to Cancer

Avert or Delay its Onset

Detect and Eradicate its

Presence

Control its Behavior

2004 2015

Opportunities for Intervention

Natural Death


2004 2015



Presence


•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

Natural Death


Avert or Delay its Onset Mass Media

Population “Targeting”Community Intervention


http://www.magazines.com/magcom/covers/0/06/085/0060857.jpg

Amplifying Capacity

Natural Death




• “Psychographic” push• Message tailoring• Personal health technologies• Genomic risk assessment


Natural Death





Presence


Breast Cancer Awareness

Awareness CampaignsPatient Provider Interaction

Amplifying Capacity

Natural Death





Presence


•Online resources•Personal health record•Access to care


Natural Death





Presence




Paper-BasedMedical Records

Amplifying Capacity

Natural Death





Presence




•Electronic Medical Records•Personal Monitoring

http://www.medinotes.com/ptourform.htm

http://images.google.com/imgres?imgurl=http://www.symbol.com/solutions/government/doctor2.jpg&imgrefurl=http://www.symbol.com/solutions/government/government_market_in_healthcar.html&h=128&w=128&sz=19&tbnid=diV3XZ-4PT0J:&tbnh=85&tbnw=85&start=45&prev=/images%3Fq%3Ddoctor%2Bpatient%2Bcomputer%26start%3D40%26hl%3Den%26lr%3D%26ie%3DUTF-8%26sa%3DN

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

http://jncicancerspectrum.oupjournals.org/jncimono//current.shtml

HINTS I: Construction & Operations

Measure Knowledge, Attitudes, Behavior

Natural Death


2004 2015



Presence





Natural Death


2004 2015



Presence





Natural Death


2004 2015



Presence





Natural Death


2004 2015



Presence





Marker ItemsFrom Other

National Surveys

Measure Knowledge, Attitudes, Behavior

Measure Attributes of New Media

• Demassified• Decentralized• Interactive• Adaptable• Connected

Expand Framework to Accommodate New Media Attributes

PerceivedInformation

Need?

New Knowledge,Attitudes, and Beliefs

HealthBehaviors

Channel Characteristics

Seek Information

Factors influencing choice• Anonymity• Interactivity• Timeliness• Clarity• Credibility• Content• Cost

Channel attributes (affordances) 3

• Accessibility• Availability (e.g., 7 X 24)• Bandwidth• Responsivity • Directionality

Stage 1: Build Awareness Stage 2: Support Information Seeking

Select Channel for Obtaining Information

• Formal Sources (e.g., family doctor)

• Commercial Sources (e.g.,TV, newspapers)

• Informal Sources (e.g., friends and relatives)

Cancer knowledge• Personal risk• Preventability• Relative prevalence• Desire to change/barriers to change• Myths and misinformation• Specific cancer knowledge

Attitudes toward• Channel (channel attributes)• Personal ability (self-efficacy)• Prevention/treatment (response-efficacy)• Sources (comparative preference)

Personal characteristics• Age• Gender• SES• Family history• Education• Cultural background• Language(s) spoken• Environmental exposure• General health• Direct experience with cancer• Motivation to change

Structural Characteristics4

“Awareness”Communication

Person Characteristics

Desire to Change(Intention)

Barriers

Initial Set of ConstructsConstructs # of Items

Health CommunicationSocial ties/interpersonal channels 17Media exposure 10Internet usage (general) 25Source outcomes 8Message discrimination 9Information seeking 20Channel credibility, reliance 15Information efficacy 5Other 1

Cancer Knowledge, AttitudesPersonal risk 2Preventability 5Relative prevalence 3Desire to change/barriers to Change 27Myths and Misinformation 7Specific cancer knowledge 38

Cancer-Related BehaviorsScreening (Breast, Cervical, Colon, Prostate)Alcohol consumption 4Exercise 10Fruits and vegetables 14Weight control 3Tobacco Use 30

Individual CharacteristicsCancer history/ health status 18Demographics 19Access to health care 35

Timing: 65 Minutes

Conducted Extensive Pre-testing

ScreenerHealth

Communication

Internet Users

Cancer InformationSeekers

CancerHistory

GeneralCancer

Knowledge

Cancer Related Behaviors• Tobacco• Alcohol• Fruits/Veg.• Exercise• Height/Weight

HealthStatus

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

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 / ScreeningColon cancerBreast cancerCervical cancerProstate cancer

281358

Primary Cancer Risk Behaviors 29

Health Status and Demographics 14

Total number of survey questions:

158

Data Sharing andDissemination

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/

HINTSDatabaseSAS,SPSS

Data Sharing


• Posted technical documentation


Data Sharing


• Posted technical documentation

• Hosting data users conference, Jan. 2005


Creating Informatics Support for Public & Researchers

HINTSDatabaseSAS,SPSS

How many hours do Americans watch Television?

Working with Results Users

How can I use findings to communicate to the public better?

Creating KnowledgeProducts

HINTS II and Beyond

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

NCI Strategic Framework

InterventionResearch

Application &Program Delivery

FundamentalResearch

SurveillanceResearch

Reducing the Cancer Burden

KnowledgeSynthesis



FundamentalResearch



KnowledgeSynthesis

Goal: Retain 50% of Survey for Surveillance Purposes




FundamentalResearch



KnowledgeSynthesis



FundamentalResearch



KnowledgeSynthesis

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




FundamentalResearch



KnowledgeSynthesis



FundamentalResearch



KnowledgeSynthesis

Goal: Monitor Effects of New Communication Media




FundamentalResearch



KnowledgeSynthesis



FundamentalResearch



KnowledgeSynthesis

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”

http://www.chis.ucla.edu/index.html

http://seer.cancer.gov/anniversary/

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

[email protected]

Creating a National Evidence Base for Health Communication & Informatics

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