Information Seeking and Information Seeking and Information Avoidance: Information Avoidance:

The Case of Patients and Health The Case of Patients and Health InformationInformation

bybyDonald O. CaseDonald O. Case

UK College of Communications & Info. StudiesUK College of Communications & Info. Studies

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

Colleagues at UKColleagues at UK

► J. David Johnson, Dean, CCIS, & author J. David Johnson, Dean, CCIS, & author of Cancer-related Info. Seeking of Cancer-related Info. Seeking (Hampton)(Hampton)

► James E. Andrews, Asst. Prof., SLISJames E. Andrews, Asst. Prof., SLIS►Suzanne L. Allard, doctoral candidateSuzanne L. Allard, doctoral candidate►Kim M. Kelly, Fellow, genetics Kim M. Kelly, Fellow, genetics

counselorcounselor

Background of the ProblemBackground of the Problem

►Exploration of Human GenomeExploration of Human Genome►Pace of scientific discoveryPace of scientific discovery►Public perceptionPublic perception►Complex field of health informationComplex field of health information►Patient/Consumer movementPatient/Consumer movement►Limited societal resources for copingLimited societal resources for coping

Genetics and CancerGenetics and Cancer

““We have learned that cancer We have learned that cancer is . . . the consequence of is . . . the consequence of alterations in DNA. . . . alterations in DNA. . . .

Genetic information has the Genetic information has the potential to transform how we potential to transform how we

prevent, detect, and treat prevent, detect, and treat cancer.” Klausner, 1996, p. cancer.” Klausner, 1996, p.

3636

An Information Seeking An Information Seeking ProblemProblem

►Complex topic, individual circumstancesComplex topic, individual circumstances► Importance to individual and societyImportance to individual and society►Rapidly changing knowledge baseRapidly changing knowledge base►Low levels of health knowledge and skillsLow levels of health knowledge and skills►ParadoxParadox►““The Perfect Storm”The Perfect Storm”

Genetic-related InformationGenetic-related Information

►Predisposition, e.g., BRCA1/2, ApoEPredisposition, e.g., BRCA1/2, ApoE►Pre-symptomatic screening Pre-symptomatic screening

possibilitiespossibilities► Individualized treatment interventionIndividualized treatment intervention

Common Findings of Common Findings of Information Seeking StudiesInformation Seeking Studies

►Accessibility is THE critical factorAccessibility is THE critical factor►People are preferred sourcesPeople are preferred sources►Many have primitive seeking skillsMany have primitive seeking skills►Strong influence of habit and inertiaStrong influence of habit and inertia

Annual Kentucky SurveyAnnual Kentucky Survey

► Annual UK Survey Research Center pollAnnual UK Survey Research Center poll► CATI, July and August, 2002CATI, July and August, 2002► 2,329 contacted, 882 responses (41%)2,329 contacted, 882 responses (41%)► 92% white, 60% female, 28% rural, 23% city92% white, 60% female, 28% rural, 23% city► 51% had at least some college education51% had at least some college education

Nine Genetics Questions, Nine Genetics Questions, PlusPlus

► Are there cancers that Are there cancers that “run in your family”?“run in your family”?

► Understand of Understand of genetics (Poor to genetics (Poor to Excellent)Excellent)

► Worry about inheriting Worry about inheriting cancer (Never - Often)cancer (Never - Often)

► 1st, 2nd & 3rd places 1st, 2nd & 3rd places to look for info. aboutto look for info. about

► Need help to Need help to determine risk?determine risk?

► How much help to How much help to decide about testing? decide about testing? (None to A Lot)(None to A Lot)

► Would you have test?Would you have test?► (Other questions (Other questions

from other survey from other survey sponsors)sponsors)

Responses to “Source” Responses to “Source” QuestionsQuestions

►93% at least one, 68% two, 34% three93% at least one, 68% two, 34% three►15 unique source identified in free recall15 unique source identified in free recall►1st: 47% Internet, 14% Library, 18% MD1st: 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% Family3rd: 33% MD, 30% Library, 8% Family►Overall: 63% Internet, 50% Library, 47% MD, Overall: 63% Internet, 50% Library, 47% MD,

18% Family, 11% CIS, 10% Hospital18% Family, 11% CIS, 10% Hospital

FindingsFindings

►42% believed cancers ran in family42% believed cancers ran in family►Understanding: 14% Excellent, 34% Good, Understanding: 14% Excellent, 34% Good,

36% Fair, 11% Poor -- Self Ratings36% Fair, 11% Poor -- Self Ratings► Identifying more sources positively related Identifying more sources positively related

to high understanding (p<.001).to high understanding (p<.001).►68% needed assistance; 59% want testing68% needed assistance; 59% want testing►12% worry Often, 26% Some, 28% Never12% worry Often, 26% Some, 28% Never

Implications of FindingsImplications of Findings

►Dominance of Internet and LibraryDominance of Internet and Library►Family and Friends high in earlier studiesFamily and Friends high in earlier studies►Emergence of Internet among “old” Emergence of Internet among “old”

sourcessources►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.►Doesn’t contain USABLE info on geneticsDoesn’t contain USABLE info on genetics

Future WorkFuture Work

►Better understanding of “Internet” Better understanding of “Internet” ►Explore beliefs about genetics Explore beliefs about genetics

informationinformation►Explore tendency to avoid informationExplore tendency to avoid information►Develop counseling protocols and test: Develop counseling protocols and test:

GENIS2 grant proposal to work with GENIS2 grant proposal to work with callers to Cancer Information Servicecallers to Cancer Information Service

Suggested ReadingSuggested Reading

► Johnson, Andrews, Allard (2001). A model for Johnson, Andrews, Allard (2001). A model for understanding and affecting cancer genetics understanding and affecting cancer genetics information seeking. LISR, 23.information seeking. LISR, 23.

► Case (2002). Looking for Information: A Case (2002). Looking for Information: A survey of research on info seeking, needs survey of research on info seeking, needs and behavior. Academic Press / Elsevier and behavior. Academic Press / Elsevier Science. Science.

► Stopfer (2000). Genetics counseling and Stopfer (2000). Genetics counseling and clinical cancer genetics services. Sem. Surg. clinical cancer genetics services. Sem. Surg. Oncol., 18.Oncol., 18.