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Cancer Trials Participation, Risk and Numeracy Donna L. LaVallie, DO, MPH Acting Instructor, Medical Education and Biomedical Informatics University of Washington March 12, 2007
Overview • Topic significance • Projects Review • Elders 2006 • Ft. Peck • Elders 2007 • Northwest Indian College/Lummi • Summary
Topic Significance • Disproportionate cancer burden, cancer trial under representation for ethnic minorities • Risk information commonly encountered--- Understood?
“Risk” : statements of chance • “Medication XX lowers your cholesterol by 30%” • “Smokers are 10 times more likely to develop lung cancer”. • “Your chance of developing breast cancer in the next 10 years is 0.4%”.
Numeracy • Numeracy: “ability to handle basic probability and numerical concepts” • Numeracy skills—strong influence in accurately assessing risk • Inadequate numeracy skills not uncommon—found to be common among “educated” segments of population
NWIC, Lummi Visual, narrative risk; Numeracy Randomization Tailoring visual Younger population Trials participation Numeracy Visual, narrative risk Numeracy Randomization Elders 2007 Elders 2006 Visual, narrative risk Numeracy Adult population Ft. Peck 2006
Elders survey 2006 • “Cancer trials participation and numeracy” • Factors influencing participation in cancer trial: 38 questions • Numeracy: 6 questions • Demographics
Elders 2006: promoters to participation • Lead researcher of Native descent • Study physician experienced in working with American Indians/Alaska Natives • Personal experience with cancer being studied • Family support for participation • Belief/hope study leads to new Rx
Elders 2006: barriers to participation • Distance from study site • High risk for breach of confidentiality
Ft. Peck survey 2006 • T32 collaboration—medical student research program • Anonymous survey, 25 questions, 4 versions • Textual/narrative vs visual risk information • Numeracy/risk questions
Visual Risk Image do not develop cancer develop cancer
Ft. Peck survey 2006: results • 209 completed surveys • Odds of correct answer significantly increased for those who received risk information in a textual/narrative PLUS visual format as opposed to textual/narrative ONLY • OR=2.7, CI=1.6-4.5
Elders survey 2007 • “Cancer risk perceptions and understanding of visual risk information” • 6 survey versions, 30 questions • Visual vs narrative risk information • Attitudes to randomization • Numeracy/risk questions
Elders survey 2007: results • 84 surveys completed • Analysis, results pending
Northwest Indian College, Lummi 2007 • Examine several facets relating to participation in biomedical research • Anonymous survey, registration • Main campus, 6 distance sites • Focus groups
Northwest Indian College, Lummi 2007 • Strongest predictors of willingness to participate in cancer trial • Attitudes to randomization • Textual vs visual risk information • Focus group input for “visual”
Conclusions • Need to increase American Indian/Alaska Natives’ participation in cancer trials • We need to LEARN HOW to present risk information
Future ? • Designing health promotion, disease prevention materials that incorporate “user friendly” risk information • Partnerships with Native communities • Culturally competent research professionals