My Cancer Genome: Evaluating an Educational Model to Introduce Patients and Caregivers to Precision Medicine Information

This study tested an innovative model for creating consumer-level content about precision medicine based on health literacy and learning style principles. “Knowledge pearl” videos, incorporating multiple learning modalities, were created to explain genetic and cancer medicine concepts. Cancer patients and caregivers (n=117) were randomized to view professional-level content directly from the My Cancer Genome (MCG) website (Group A; control), content from MCG with knowledge pearls embedded (Group B), or a consumer translation, targeted at the sixth grade level, with knowledge pearls embedded (Group C). A multivariate analysis showed that Group C, but not Group B, showed greater knowledge gains immediately after viewing the educational material than Group A. Statistically significant group differences in test performance were no longer observed three weeks later. These findings suggest that adherence to health literacy and learning style principles facilitates comprehension of precision medicine concepts and that ongoing review of the educational information is necessary.

[1]  R. Wassersug,et al.  How reliable are "reputable sources" for medical information on the Internet? The case of hormonal therapy to treat prostate cancer. , 2013, Urologic oncology.

[2]  F. Collins,et al.  A new initiative on precision medicine. , 2015, The New England journal of medicine.

[3]  P. Livingston,et al.  Mapping the information resources available to patients with colorectal cancer. , 2009, European journal of cancer care.

[4]  R. Herbst,et al.  Lung Cancer in the Era of Precision Medicine , 2015, Clinical Cancer Research.

[5]  H. Kaufman,et al.  Melanoma as a model for precision medicine in oncology. , 2014, The Lancet. Oncology.

[6]  K. Donigan,et al.  The Critical Challenge of Educating the Public About Genetics , 2014, Current Genetic Medicine Reports.

[7]  Dario A. Giuse,et al.  Supporting Communication in an Integrated Patient Record System , 2003, AMIA.

[8]  Rebecca N Jerome,et al.  Strategically aligning a mandala of competencies to advance a transformative vision. , 2013, Journal of the Medical Library Association : JMLA.

[9]  J Sybil Biermann,et al.  Bladder cancer facts: accuracy of information on the Internet. , 2003, The Journal of urology.

[10]  T. Choueiri,et al.  Precision medicine for metastatic renal cell carcinoma. , 2014, Urologic oncology.

[11]  E. Boyko,et al.  Brief questions to identify patients with inadequate health literacy. , 2004, Family medicine.

[12]  Julie Ann Sosa,et al.  Outdated and incomplete: a review of thyroid cancer on the World Wide Web. , 2007, Thyroid : official journal of the American Thyroid Association.

[13]  Sara I Crumb,et al.  An evaluation framework to assess educational genetic websites: Are they meeting public needs? , 2014 .

[14]  C M Condit,et al.  Public understandings of genetics and health , 2010, Clinical genetics.

[15]  Julie Ann Sosa,et al.  Filling a Void: Thyroid Cancer Surgery Information on the Internet , 2007, World Journal of Surgery.

[16]  Deborah H. Charbonneau,et al.  Genetics Home Reference , 2005 .

[17]  Peter C Black,et al.  Prostate cancer on the Internet--information or misinformation? , 2006, The Journal of urology.

[18]  Debra Skinner,et al.  “Not Tied Up Neatly with a Bow”: Professionals’ Challenging Cases in Informed Consent for Genomic Sequencing , 2016, Journal of Genetic Counseling.

[19]  Gregory Makoul,et al.  Patient preferences for shared decisions: a systematic review. , 2012, Patient education and counseling.

[20]  S. Kardia,et al.  Understandings of Basic Genetics in the United States: Results from a National Survey of Black and White Men and Women , 2010, Public Health Genomics.

[21]  Geoffrey S Ginsburg,et al.  Public knowledge of and attitudes toward genetics and genetic testing. , 2013, Genetic testing and molecular biomarkers.

[22]  Michael J. Dougherty,et al.  Assessing the Genetics Content in the Next Generation Science Standards , 2015, PloS one.

[23]  P. Harris,et al.  Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support , 2009, J. Biomed. Informatics.

[24]  Patrick M. Wilson,et al.  Cancer-Related Information Seeking Among Cancer Survivors: Trends Over a Decade (2003–2013) , 2015, Journal of Cancer Education.

[25]  Charles Swanton,et al.  My Cancer Genome: a unified genomics and clinical trial portal , 2012 .

[26]  Wei Xu,et al.  Cancer patients’ acceptance, understanding, and willingness-to-pay for pharmacogenomic testing , 2014, Pharmacogenetics and genomics.

[27]  Christine M. Micheel,et al.  Guiding Oncology Patients Through the Maze of Precision Medicine , 2016, Journal of health communication.