Emerging research; FORCE community
Blood relatives of people with BRCA mutations meet national guidelines for testing. Health care providers are limited in their ability to reach out to relatives of patients due to HIPAA, putting increased pressure on patients who test positive to contact their relatives. Cascade testing – where one member who tests positive for a mutation notifies relatives – is considered an effective way to improve uptake. Currently about 30% of people who meet national guidelines undergo testing for BRCA. This proposal would use our PaGeMe rubric to develop patient generated messaging to help people speak to relatives about genetic testing and navigate them through the testing process.
Our Steering Committee and Research Work Group gave this study a prioritization
score of 3.08 out of 4 points, meaning this is a high-priority study. This study ranked 3rd in priority scores among the first group of study questions.
Our Executive Committee and research team considered the feasibility of this
study as medium-high, and suggested promoting it to the planning phase.
Recommend promotion to Planning Phase
Our Steering Committee prioritizes questions based on four parameters on a scale from 1-4. Here are the average scores:
Our Executive Committee scored feasibility as high based on the following considerations:
Engagement Survey Results: Your Experiences Talking to Family Members About the Inherited Mutation in Your Family
Previvors/High risk people
People with a BRCA mutation
People with an ATM, PALB2, PTEN, or other mutation that increases cancer risk
People with Lynch Syndrome
People at high risk for breast cancer
People at high risk for ovarian cancer
People who are newly diagnosed with cancer
ABOUT is a Patient-Powered Research Network in PCORnet®, the National Patient-Centered Clinical Research Network, an initiative funded by the Patient-Centered Outcomes Research Institute (PCORI).
© FORCE: Facing Our Risk of Cancer Empowered Inc. email@example.com
Website by Rareheron Web Design