FORCE XRAY PROGRAM Evaluating Reports on Breast Cancer in the Media

Facing Our Risk of Cancer Empowered (FORCE)  National nonprofit with mission to improve the lives of people and families affected by hereditary breast and ovarian cancer (HBOC)  Provides comprehensive, evidence-based information on HBOC to help people make informed health care decisions  Conducts Patient-Centered Outcomes Research (PCOR) through ABOUT Network Research Registry  Promotes recruitment for HBOC-specific research studies  Provides peer support and navigation  Unites the HBOC community to advocate for more support, resources, research

Empowering Patients Through Programs

ABOUT Patient-Powered Research Network  A research registry organized by and for people with HBOC  Turns real-world experiences into patient-centered outcomes research  Studies long-term outcomes for people undergoing genetic counseling, testing, and medical interventions related to detection, prevention and treatment of HBOC  ABOUT is one of 18 disease-focused groups participating in the National Patient-Centered Clinical Research Network (PCORnet); a national platform for conducing large-scale patient-centered outcomes research  Goal of PCORnet is to collect and connect personal health data and outcomes from 70 million Americans to conduct representative, large-scale research studies

eXamining Relevance of Articles for Young Survivors (XRAYS Program)  Extension and expansion of education and research programs  Rating media articles and reports on several criteria  Assigning a graphic representation and metric to score relevance of information  Correcting inaccuracies and putting statistics and information in perspective for young women to use to make health care decision

Step 1 Questions from community stakeholders New and emerging research Step 1 Needs assessment  Questions/comments submitted by consumers  New research or media articles  Surveys and needs assessment results Current Article/Topic Review Process

Step 1 Questions from community stakeholders Step 1 Step 2 Step 1 Step 2 Literature and guideline review and Advisory Board consulted Current Article/Topic Review Process

Step 1 Questions from community stakeholders Step 1 Step Step 1 Step 2 Step 3 Step 1 Step 2 Step 3 Article written to clarify information and guidelines, and share limits of knowledge Current Article/Topic Review Process

Step 1 Questions from community stakeholders Step 1 Step Step 1 Step 2 Step 3 Step 1 Step 2 Step 3 Step 2 Step 1 Step 2 Step 3 Step 4 Dissemination of article back to consumers and health care providers to assist informed and shared decision-making Current Article/Topic Review Process

XRAYS Program  Builds on existing education efforts with these enhancements:  Assessment/scan of media outlets to determine most heavily trafficked sites used by young women seeking information about breast cancer  Survey young women across spectrum of age, risk, disease severity, and diagnosis and treatment continuum to determine when they most turn to media for health and cancer information  Development of rating rubric and graphic representation of rating for “at-a-glance” score of article  Focus on Young Women and Breast Cancer  Wide dissemination channels through strategic partnerships  Evaluation of program for numbers reached, knowledge gained, usefulness for decision-making, and media outlet response

Example: Salivary Gland Cancer Linked to BRCA Mutations  Researchers studied 5754 individuals from families of women previously diagnosed with breast cancer with a confirmed BRCA mutation  Found 5 cases of salivary gland cancers:  1 case was in a person with a confirmed BRCA mutation  2 cases in untested close relatives of mutation carriers who are likely carriers  2 cases in relatives who had either tested negative for family mutation or were likely negative based on pedigree analysis  Overall estimated risk for salivary gland cancers in BRCA mutation carriers =.052% compared with.003% in general population  Study design had several limitations

Example: Salivary Gland Cancer Linked to BRCA  Wide media reporting of findings  Headlines imply proven link between BRCA and salivary gland cancer  Limitations of study and relevance for health and medical decision-making absent or minimal in articles

Example: Salivary Gland Cancer Linked to BRCA  FORCE published review article on research study on website translating the science for a lay audience

Example: Salivary Gland Cancer Linked to BRCA  XRAYS Program  Develop lay-level at-a-glance summary and rating system for lay audience  Examples of what rating parameters, graphics, and summary might look like