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Presented to SOASIST, Dayton, Ohio, March 13, 2003

Information Seeking and Information Avoidance: The Case of Patients and Health Information by Donald O. Case UK College of Communications & Info. Studies. Presented to SOASIST, Dayton, Ohio, March 13, 2003. Colleagues at UK.

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Presented to SOASIST, Dayton, Ohio, March 13, 2003

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  1. Information Seeking and Information Avoidance: The Case of Patients and Health InformationbyDonald O. CaseUK College of Communications & Info. Studies Presented to SOASIST, Dayton, Ohio, March 13, 2003

  2. Colleagues at UK • J. David Johnson, Dean, CCIS, & author of Cancer-related Info. Seeking (Hampton) • James E. Andrews, Asst. Prof., SLIS • Suzanne L. Allard, doctoral candidate • Kim M. Kelly, Fellow, genetics counselor

  3. Background of the Problem • Exploration of Human Genome • Pace of scientific discovery • Public perception • Complex field of health information • Patient/Consumer movement • Limited societal resources for coping

  4. Genetics and Cancer “We have learned that cancer is . . . the consequence of alterations in DNA. . . . Genetic information has the potential to transform how we prevent, detect, and treat cancer.” Klausner, 1996, p. 36

  5. An Information Seeking Problem • Complex topic, individual circumstances • Importance to individual and society • Rapidly changing knowledge base • Low levels of health knowledge and skills • Paradox • “The Perfect Storm”

  6. Genetic-related Information • Predisposition, e.g., BRCA1/2, ApoE • Pre-symptomatic screening possibilities • Individualized treatment intervention

  7. Common Findings of Information Seeking Studies • Accessibility is THE critical factor • People are preferred sources • Many have primitive seeking skills • Strong influence of habit and inertia

  8. Annual Kentucky Survey • Annual UK Survey Research Center poll • CATI, July and August, 2002 • 2,329 contacted, 882 responses (41%) • 92% white, 60% female, 28% rural, 23% city • 51% had at least some college education

  9. Are there cancers that “run in your family”? Understand of genetics (Poor to Excellent) Worry about inheriting cancer (Never - Often) 1st, 2nd & 3rd places to look for info. about Need help to determine risk? How much help to decide about testing? (None to A Lot) Would you have test? (Other questions from other survey sponsors) Nine Genetics Questions, Plus

  10. Responses to “Source” Questions • 93% at least one, 68% two, 34% three • 15 unique source identified in free recall • 1st: 47% Internet, 14% Library, 18% MD • 2nd: 34% Library, 22% MD, 19% Internet, • 3rd: 33% MD, 30% Library, 8% Family • Overall: 63% Internet, 50% Library, 47% MD, 18% Family, 11% CIS, 10% Hospital

  11. Findings • 42% believed cancers ran in family • Understanding: 14% Excellent, 34% Good, 36% Fair, 11% Poor -- Self Ratings • Identifying more sources positively related to high understanding (p<.001). • 68% needed assistance; 59% want testing • 12% worry Often, 26% Some, 28% Never

  12. Implications of Findings • Dominance of Internet and Library • Family and Friends high in earlier studies • Emergence of Internet among “old” sources • BUT: What IS the “Internet” or “Web”? • Could be pages, email, discussion, etc. • Doesn’t contain USABLE info on genetics

  13. Future Work • Better understanding of “Internet” • Explore beliefs about genetics information • Explore tendency to avoid information • Develop counseling protocols and test: GENIS2 grant proposal to work with callers to Cancer Information Service

  14. Suggested Reading • Johnson, Andrews, Allard (2001). A model for understanding and affecting cancer genetics information seeking. LISR, 23. • Case (2002). Looking for Information: A survey of research on info seeking, needs and behavior. Academic Press / Elsevier Science. • Stopfer (2000). Genetics counseling and clinical cancer genetics services. Sem. Surg. Oncol., 18.

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