1. 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

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

3. Background of the Problem Exploration of Human Genome Exploration of Human Genome Pace of scientific discovery Pace of scientific discovery Public perception Public perception Complex field of health information Complex field of health information Patient/Consumer movement Patient/Consumer movement Limited societal resources for coping 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 Complex topic, individual circumstances Importance to individual and society Importance to individual and society Rapidly changing knowledge base Rapidly changing knowledge base Low levels of health knowledge and skills Low levels of health knowledge and skills Paradox Paradox The Perfect Storm The Perfect Storm

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

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

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

9. Nine Genetics Questions, Plus Are there cancers that run in your family? Are there cancers that run in your family? Understand of genetics (Poor to Excellent) Understand of genetics (Poor to Excellent) Worry about inheriting cancer (Never - Often) Worry about inheriting cancer (Never - Often) 1st, 2nd & 3rd places to look for info. about 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)

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

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

12. Implications of Findings Dominance of Internet and Library Dominance of Internet and Library Family and Friends high in earlier studies Family and Friends high in earlier studies Emergence of Internet among old sources Emergence of Internet among old sources BUT: What IS the Internet or Web? BUT: What IS the Internet or Web? Could be pages, email, discussion, etc. Could be pages, email, discussion, etc. Doesnt contain USABLE info on genetics Doesnt contain USABLE info on genetics

13. Future Work Better understanding of Internet Better understanding of Internet Explore beliefs about genetics information Explore beliefs about genetics information Explore tendency to avoid information Explore tendency to avoid information Develop counseling protocols and test: GENIS2 grant proposal to work with callers to Cancer Information Service 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. 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. 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. Stopfer (2000). Genetics counseling and clinical cancer genetics services. Sem. Surg. Oncol., 18.