Breast Cancer and the Internet: What

1
Breast Cancer and the InternetWhats Available
and Whats Understandable?

• Christine Makosky Daley
• Department of Health and Social Behavior, Harvard
  School of Public Health
• Department of Anthropology,
• University of Connecticut

2
Information Available to Breast Cancer Patients

• Popular Books and Magazines
• Pamphlets
• Medical Journals (maybe)
• Internet
• Informational Sites
• Discussion Groups
• Medical Advice

3
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

4
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?

5
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

6
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
  populations literacy level
• Internet materials have not yet been addressed

7
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

8
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
9
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

10
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

11
SAM, contd

• Modifications, contd
• 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

12
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

13
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
14
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
15
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
16
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

17
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

18
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)

19
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

20
Conclusions, contd

• 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