Guiding Oncology Patients Through the Maze of Precision Medicine

Abstract

As the role of genomics in healthcare grows, patients increasingly require adequate genetic literacy to fully engage in their care. This study investigated a model for delivering consumer-friendly genetic information to improve understanding of precision medicine using health literacy and learning style principles. My Cancer Genome (MCG), a freely available cancer decision support tool, was used as a test-bed. MCG content on a melanoma tumor mutation, BRAF V600E, was translated to a sixth grade reading level, incorporating multiple learning modalities. Ninety patients and caregivers were recruited from a melanoma clinic at an academic medical center and randomized to three groups. Group A (control) received an exact copy of text from MCG. Group B was given the same content with hyperlinks to videos explaining key genetic concepts, identified and labeled by the team as “knowledge pearls.” Group C received the translated content with the knowledge pearls embedded. Changes in knowledge were measured through pre- and post- questionnaires. Group C showed the greatest improvement in knowledge. The study results demonstrate that providing information based on health literacy and learning style principles can improve patient understanding of genetic concepts, thus increasing their likelihood of taking an active role in any decision-making concerning their health.

Electronic Communication Channel Use and Health Information Source Preferences Among Latinos in Northern Manhattan

“…Precision medicine (PM) is an emerging approach to disease treatment and prevention that takes into account individual genetic variability, lifestyle choices, and environmental exposures [3]. To provide informed consent to participate in PM research and to make informed health-related decisions that involve PM, patients are required to understand unfamiliar and complex scientific information [5, 6]. While ushering in a new era in the detection, diagnosis and treatment of cancer, the introduction of PM into oncology also presents the real potential for widening the health disparities gap among disadvantaged populations with low educational levels, inadequate health literacy, and poor English proficiency; individuals for whom PM concepts will be difficult to grasp without targeted education and support [7].…”

Community education to enhance the more equitable use of precision medicine in Northern Manhattan

“…The validated measure of comprehension tested a limited number of items. Knowledge or lack of knowledge of terms outside those tested may have influenced our measure of comprehension positively or negatively, although this instrument has been used successfully by others as part of a cancer decision support tool (Giuse et al, 2016). Furthermore, pre‐ and post‐test assessments utilized a ‘fill in the blank’ format with which some participants educated in countries other than the United States may not have been familiar.…”

“…How low educational attainment, poor English proficiency, and limited health literacy and numeracy (Giuse et al, 2016) affect the understanding of complex genetic information and, thus, the uptake of these new treatments is of great concern. Accumulating evidence demonstrates that culturally diverse populations have limited understanding of genetics and genetic testing and are concerned about the purpose of genetic testing and the information this testing provides (Canedo, Miller, Myers & Sanderson, 2019).…”

Informationssuche und Nutzung von Informationsquellen durch Melanompatienten deutscher Hautkrebszentren

“…Mehr als die Hälfte der MP erwartete jedoch von ihrem Arzt, dass er sie außerdem über IQ informiert, die verlässlich sind und die sie über das Arztgespräch hinaus nutzen können. Hierbei handelt es sich um einen Wunsch, den Krebspatienten häufig äußern . Um diese Vermittlerrolle wahrnehmen zu können, müssen Ärzte mit lokalen Angeboten vertraut sein und außerdem genug Medienkenntnis besitzen, um geeignete Quellen vorschlagen zu können.…”