Download Breast Cancer and the Internet

Breast Cancer and the Internet:
What’s Available and What’s
Understandable?
Christine Makosky Daley
Department of Health and Social Behavior,
Harvard School of Public Health
Department of Anthropology,
University of Connecticut
Information Available to Breast
Cancer Patients
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Popular Books and Magazines
Pamphlets
Medical Journals (maybe)
Internet
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Informational Sites
Discussion Groups
Medical Advice
The Internet
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Now more available
than ever
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Home
Workplace
Public hook-ups
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Libraries
Cancer Centers
Schools
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Hagan (1997) provides
a list of organizations,
publications, and
Internet sites available
to breast cancer
patients
It is still undetermined
if the information
available is suitable for
the group
Is the Material Suitable?
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Which sites provide the best or most
accurate information about breast
cancer, including information on risk,
diagnosis and treatment, and the
biology of the disease?
Which sites provide the most easily
understood information?
Which sites are most easily navigated?
Literacy – the NALS (1993)
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21% - 23% of adults in the US demonstrated
literacy skills at the lowest levels of prose,
document, and quantitative proficiencies
25% - 28% were at the next highest level
These two levels account for approximately ½ the
adult US population
These two levels show an inability to perform
literacy tasks necessary to function in society and
meet everyday needs
Ethnic minorities are disproportionately
represented in these two levels
Assessments of Cancer
Information – Print Information
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Glazer et al. (1996), Guidry & Fagan (1997),
Meade et al. (1992), Michielutte et al. (1992)
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American Cancer Society (Meade et al. 1992)
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Scored between grade 9 and grade 12
Grade 11
All of these materials are above ½ of the
population’s literacy level
Internet materials have not yet been
addressed
Sites Chosen
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Ten sites were evaluated using the SAM
(Suitability Assessment of Materials)
Meta-search results done in March 2001
US sites based on popularity
Sites were designed for patients, but
some also for researchers or health care
practitioners
SundayNews.com
www.cancernews.com/breast.htm
National Alliance of Breast
Cancer Organizations
www.nabco.org
American Cancer Society
www.cancer.org
Breast Cancer Answers Project
– Berkeley
www.canceranswers.com
Living Beyond Breast Cancer
www.lbbc.org
Breast Cancer Fund
www.breastcancerfund.org
Breast Health and Breast
Cancer Network
www.cancerhelp.com/ed
University of Wisconsin
Comprehensive Cancer Center
www.medsch.wisc.edu/bca
Internet Male Breast Cancer
Group
http://interact.withus.com/interact/mbc
Oncolink – University of
Pennsylvania
http://oncolink.upenn.edu/disease/breast
Suitability Assessment of Materials (SAM)
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Content
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Purpose is evident
Content about behaviors
Scope is limited
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Content Accuracy
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Summary or review included
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Literacy Demand
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Cover graphic shows purpose
Type of graphics
Relevance of illustrations
Lists, tables, etc. explained
Captions used for graphics
Layout and Topography
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Layout factors
Typography
Subheadings used
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Navigation
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Reading grade level (Fry)
Writing style, active voice
Vocabulary uses common words
Context is given first
Learning aids via “road signs”
Graphics
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Learning Stimulation,
Motivation
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Cultural Appropriateness
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Interaction used
Behaviors are modeled and specific
Motivation – self-efficacy
Match in logic, language, experience
Cultural images and examples
Total Possible Points
= 48
SAM, continued
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Doak, Doak, & Root (1996)
Modifications:
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Cover is considered the home page
Content Accuracy
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Superior – Information accurate to within a year, includes
references to scholarly work
Adequate – Information is accurate to within two years, does not
include references
Not suitable – Information is dated (older than two years) or is
incorrect
SAM, cont’d
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Modifications, cont’d
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Navigation
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Superior – Must include the following:
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Links from home page to information without going
through more than 2 pages
Links in 14 point font or larger and are distinct from
the text
Search function
FAQ page
Adequate – Includes 2 or 3 of the above
Not Suitable – Includes 1 or 0 of the above
SAM Overall Ratings
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Superior
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At least adequate on content accuracy, literacy,
and navigation
Adequate
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70% to 100%
40% to 69%
At least adequate on content accuracy, literacy,
and navigation
Not Suitable
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0% to 39
Site
Overall Content Literacy Navigation
SundayNews.com
59.4%
2
0
0
NABCO
56.3%
2
0
1
American Cancer Society
50.0%
2
0
1
Breast Cancer Answers
67.5%
1
0
0
Living Beyond Breast
Cancer
64.7%
2
0
0
Breast Cancer Fund
31.8%
1
0
0
Breast Health and Breast
Cancer Network
57.5%
1
0
0
University of Wisconsin
69.6%
2
1
1
Male Breast Cancer
41.7%
2
0
1
Oncolink
40.0%
2
0
2
Site
Rating
Adjusted Rating
SundayNews.com
Adequate
Not Suitable
NABCO
Adequate
Not Suitable
American Cancer Society
Adequate
Not Suitable
Breast Cancer Answers
Adequate
Not Suitable
Living Beyond Breast Cancer Adequate
Not Suitable
Breast Cancer Fund
Not Suitable
Not Suitable
Breast Health and Breast
Cancer Network
Adequate
Not Suitable
University of Wisconsin
Adequate
Adequate
Male Breast Cancer
Adequate
Not Suitable
Oncolink
Adequate
Not Suitable
Site
Fry Grade Level
SundayNews.com
15
NABCO
16
American Cancer Society
Breast Cancer Answers
Living Beyond Breast Cancer
9
12
17+
Breast Cancer Fund
12
Breast Health and Breast Cancer
Network
10
University of Wisconsin
Male Breast Cancer
Oncolink
8
16
17+
Accuracy of Information
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All sites provided at least adequate
information based on the criteria used
Seven of 10 sites provided superior
information which included references
to scholarly work
Based on these sites, breast cancer
patients can receive accurate
information on the Internet
Easily Understood Information
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Only one site provided information that was
adequate in terms of reading grade level
according to the Fry formula
All other sites were not suitable for the
majority of readers, unless we assume that
women who use the Internet are at a higher
literacy level then those who do not
The biggest problem with all sites in literacy
was scientific terms that are not easily
understood, bringing grade level up
Ease of Navigation
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Only one site received a superior rating for
navigation based on the criteria used
An additional four sites received adequate
ratings
The remaining five sites were not suitable for
navigation
Common problems in navigation included:
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No search feature
No FAQs
Embedded links and links in a small font (really
also a literacy issue)
Conclusions
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Though hundreds to thousands of
breast cancer sites exist, those sites
most frequently visited are most often
not suitable for the majority of the
population
The biggest problems with breast
cancer sites revolve around the issue of
literacy
Conclusions, cont’d
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Accurate information that is not easily
understood is useless to the consumer
Writing sites at a lower literacy level and
ensuring easy navigation could drastically
alter the amount of information women are
able to understand from the Internet
Assuming the Internet continues on its
present course and is used more and more,
sites must be altered to allow women to learn
more from their use