Transcript Information Seeking and Information Avoidance: The Case of

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
► 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
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
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
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”
Genetic-related Information
► Predisposition,
e.g., BRCA1/2, ApoE
► Pre-symptomatic screening possibilities
► Individualized treatment intervention
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
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
Nine Genetics Questions, Plus
► 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)
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
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
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
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
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.