Guiding Oncology Patients Through the Maze of Precision Medicine

Abstract

As the role of genomics in health care 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 testbed. MCG content on a melanoma tumor mutation, BRAF V600E, was translated to a 6th-grade reading level, incorporating multiple learning modalities. A total of 90 patients and caregivers were recruited from a melanoma clinic at an academic medical center and randomized to 3 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 patients’ understanding of genetic concepts, thus increasing their likelihood of taking an active role in any decision making concerning their health.

Supplemental Material

A supplemental appendix for this article (containing Appendices A–D) can be accessed on the publisher’s website at http://dx.doi.org/10.1080/10810730.2015.1131772.

Additional information

Funding

This study was funded by Grant No. IMLS LG-06-13-0180-13 from the Institute of Museum and Library Services. The melanoma disease area on My Cancer Genome was supported by the Joyce Family Foundation; the Robert J. Kleberg, Jr., and Helen C. Kleberg Foundation; the T. J. Martell Foundation; an anonymous foundation; and a corporate gift from Bristol-Myers Squibb.