1. 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

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 population’s 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.comwww.cancernews.com/breast.htm National Alliance of Breast Cancer Organizations www.nabco.org American Cancer Societywww.cancer.org Breast Cancer Answers Project – Berkeley www.canceranswers.com Living Beyond Breast Cancerwww.lbbc.org Breast Cancer Fundwww.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, 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

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. SiteOverallContentLiteracyNavigation SundayNews.com59.4%200 NABCO56.3%201 American Cancer Society50.0%201 Breast Cancer Answers67.5%100 Living Beyond Breast Cancer 64.7%200 Breast Cancer Fund31.8%100 Breast Health and Breast Cancer Network 57.5%100 University of Wisconsin69.6%211 Male Breast Cancer41.7%201 Oncolink40.0%202

14. SiteRatingAdjusted Rating SundayNews.comAdequateNot Suitable NABCOAdequateNot Suitable American Cancer SocietyAdequateNot Suitable Breast Cancer AnswersAdequateNot Suitable Living Beyond Breast CancerAdequateNot Suitable Breast Cancer FundNot Suitable Breast Health and Breast Cancer Network AdequateNot Suitable University of WisconsinAdequate Male Breast CancerAdequateNot Suitable OncolinkAdequateNot Suitable

15. SiteFry Grade Level SundayNews.com15 NABCO16 American Cancer Society9 Breast Cancer Answers12 Living Beyond Breast Cancer17+ Breast Cancer Fund12 Breast Health and Breast Cancer Network 10 University of Wisconsin8 Male Breast Cancer16 Oncolink17+

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, 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