Maze of Precision Medicine

On January 30, 2015, President Obama launched the Precision Medicine Initiative, with a vision to transform medicine and generate the scientific evidence needed to move the concept of precision medicine into daily clinical practice.  This announcement helped fuel greater national attention for the use of precision medicine in healthcare.  Precision medicine initiatives provide opportunities for patients to receive truly individualized care, however, for the goals to be fully realized, the resulting knowledge of the genomic and clinical trial data that is collected and analyzed, must be properly communicated to patients.  As the role of genomics in health care grows, patients increasingly require adequate genetic literacy to fully engage in their care.  The Center for Knowledge Management, in collaboration with My Cancer Genome, conducted this study1 to evaluate a reusable model for delivering consumer-friendly information about precision medicine based on health literacy and learning style preferences.

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. The following images compare the original My Cancer Genome text with the translated text that aimed to provide study participants with adequate tools and explanations of genetic concepts for comprehension of the content:

 

 

Changes in knowledge were measured through pre and post questionnaires.  Group C showed the greatest gains in knowledge about melanoma following intervention; study participants in Groups B and C also reported high levels of satisfaction with the knowledge pearl videos. 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.  Additionally, opportunities exist for evaluating how best to reengage patients with complex precision medicine information. 

1Giuse NB, Kusnoor SV, Koonce TY, Naylor HM, Chen S, Blasingame M, Anderson IA, Micheel CM, Levy MA, Ye F, Lovly CM. Guiding Oncology Patients through the Maze of Precision Medicine. J Health Commun. Apr 4;21(Supplement 1):5-17.