FORCE and researchers at the University of South Florida formed the ABOUT Patient-Powered Network to help advance hereditary cancer research through collaborations. See below for more information about each project, FORCE's role, and the status of the research.
Plan and Prepare
Kristin Zorn, MD
Type of Research:
Using Genetic Navigation to Increase Genetic Counseling and Testing in Community Settings
According to the 2017 Health Information National Trends survey, a large portion of the population is not aware of genetic tests; people from minority populations and those with less income had lower awareness.
This limited "genomic health literacy" (defined as the capacity to obtain, process, understand, and use genomic information for health-related decision-making), poses a challenge to improving genetic counseling and testing for inherited cancer risk.
Strategies to improve these disparities are urgently needed particularly in states like Arkansas, where black men experience an average of 79.6 more cancer deaths per 100,000 than white men, black women have an average of 26.7 more cancer deaths per 100,000 than white women, and the more rural areas of the state have higher standardized cancer mortality rates. In previous work, we distilled national evidence-based guidelines for referral for genetic assessment into a brief questionnaire with branching logic. New methods are needed to broaden ascertainment of high-risk individuals outside of traditional healthcare settings and navigate them to appropriate risk-reduction options.
1. Identify barriers and facilitators to people using a plain language questionnaire to learn if they are at risk for hereditary cancer. We will test the questionnaire with people at different health literacy levels to ensure the tool is readable, understandable, and actionable. We will pilot the tool at a worksite wellness program, local nonprofit group, and faith-based network.
2. Develop a model for genetic navigation with our Community Advisory Board. WWe will create a toolkit resource for navigators and high-risk individuals with information for the most common hereditary cancer syndromes.
3. Pilot test the genetic navigator role and toolkit. We will hire and train a genetic navigator based on the results of Aims 1 and 2 to oversee a second round of questionnaire administration in community settings and guide those who screen positive through genetic assessment and risk management.
This project will provide pilot data on which we can build and scale this work.
FORCE will co-lead the community advisory board, and provide diverse perspectives on using community settings like workplace wellness programs and faith networks to identify individuals at high risk for a hereditary cancer syndrome. In addition, the advisory board will guide the design of the genetic navigator role regarding ideal background, education, source of employment, etc. The navigator will serve as a liaison between community members identified as high-risk for a HCS and the healthcare system.
This research is relevant for:
People at high risk for cancer
People with a family history of cancer