breast cancer and the internet: what’s available and what’s understandable? christine makosky...
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Breast Cancer and the Internet:What’s Available and What’s Understandable?
Christine Makosky DaleyDepartment of Health and Social
Behavior, Harvard School of Public Health
Department of Anthropology, University of Connecticut
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Information Available to Breast Cancer Patients
Popular Books and Magazines Pamphlets Medical Journals (maybe) Internet
Informational Sites Discussion Groups Medical Advice
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The Internet Now more
available than ever Home Workplace Public hook-ups
Libraries Cancer Centers Schools
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
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Is the Material Suitable? 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?
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Literacy – the NALS (1993)
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
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Assessments of Cancer Information – Print Information Glazer et al. (1996), Guidry & Fagan (1997),
Meade et al. (1992), Michielutte et al. (1992) Scored between grade 9 and grade 12
American Cancer Society (Meade et al. 1992) Grade 11
All of these materials are above ½ of the population’s literacy level
Internet materials have not yet been addressed
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Sites Chosen 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
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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
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Suitability Assessment of Materials (SAM) Content
Purpose is evident Content about behaviors Scope is limited Content Accuracy Summary or review included
Literacy Demand Reading grade level (Fry) Writing style, active voice Vocabulary uses common
words Context is given first Learning aids via “road signs”
Graphics Cover graphic shows purpose Type of graphics Relevance of illustrations Lists, tables, etc. explained Captions used for graphics
Layout and Topography Layout factors Typography Subheadings used Navigation
Learning Stimulation, Motivation
Interaction used Behaviors are modeled and specific Motivation – self-efficacy
Cultural Appropriateness
Match in logic, language, experience Cultural images and examples
Total Possible Points = 48
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SAM, continued Doak, Doak, & Root (1996) Modifications:
Cover is considered the home page Content Accuracy
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
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SAM, cont’d Modifications, cont’d
Navigation Superior – Must include the following:
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
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SAM Overall Ratings Superior
70% to 100% At least adequate on content accuracy,
literacy, and navigation Adequate
40% to 69% At least adequate on content accuracy,
literacy, and navigation Not Suitable
0% to 39
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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
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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
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Site Fry Grade Level
SundayNews.com 15
NABCO 16
American Cancer Society 9
Breast Cancer Answers 12
Living Beyond Breast Cancer 17+
Breast Cancer Fund 12
Breast Health and Breast Cancer Network
10
University of Wisconsin 8
Male Breast Cancer 16
Oncolink 17+
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Accuracy of Information 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
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Easily Understood Information 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
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Ease of Navigation 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: No search feature No FAQs Embedded links and links in a small font
(really also a literacy issue)
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Conclusions 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
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Conclusions, cont’d 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