Facing Our Risk of Cancer Empowered (FORCE):
Discussing Public Health and Patient Literacy with Dr. Sue Friedman

Interview conducted by former Clover Genetics Genomics Advocacy Intern, Aaron Hidalgo, in 2022;
Written by former Clover Genetics Genomics Advocacy Intern, Christian Pareja, University of Utah Genetic Counseling Masters Cohort 2025

Dr. Sue Friedman was 33 years old when she received a life-changing diagnosis: breast cancer, and after reading a magazine article, learned that she had the red flags for an inherited BRCA mutation, information that her doctors didn’t tell her. The unexpected diagnosis pushed the action-oriented veterinarian to take matters into her own hands and research the details surrounding hereditary breast cancer. Dr. Friedman sought out genetic counseling and later that next year, tested positive for the BRCA2 variant, known to significantly increase an individual’s risk for breast, ovarian, and other cancers. Her personal journey through cancer motivated her to increase awareness of actionable healthcare information. By sifting through the research, Dr. Friedman was able to highlight what she knew was the most critical information to know through first-hand experience. Ultimately, her purpose was to assist people living with hereditary cancer to advocate for themselves. Dr. Friedman’s diagnostic odyssey became a catalyst for establishing Facing Our Risk of Cancer Empowered (FORCE).

Founded by Dr. Friedman in 1999, FORCE is a national non-profit organization employing a team of 17 full-time individuals from across the United States. FORCE’s central focus is to improve the lives of individuals and families facing hereditary cancer. The organization stands on four pillars: education, peer support, public policy, and research. Their services aim to support people affected by hereditary cancers including survivors and previvors, a term for individuals at high risk or with significant predispositions for cancer. FORCE refines expert research and information to educate its community in making informed decisions about their health. The four pillars of FORCE’s mission are encompassed by one of its flagship programs – eXamining the Relevance of Articles for You, better known as XRAY.

XRAY aims to make actionable research understandable to the community. Initially funded by the CDC to examine media coverage of breast cancer, the idea for XRAY was ultimately inspired by the personal experiences of the FORCE community. “We would have people from our community come to us with media  stories about cancer and ask us, ‘What does this mean for me? How does this affect my care? My decision-making?’ We would go back and look at the peer-reviewed journal article the media story was based on. Many times we found that the media coverage of the research was nothing like what the peer-reviewed journal article said!” says Friedman. 

Reading about scientific research in the mainstream media may feel exciting, but  not all media coverage of research is accurate, balanced or relevant. People who do not have a scientific background may lack the skills needed to sift through the poor-quality media coverage in order to access quality and actionable research. The team at FORCE started exploring what questions their community was asking about the research findings. They learned that their community consumes science media to find out what it means for their care, their risk for cancer, and what options they had at their disposal for approaching preventative care. The response, then, was to create a program that simultaneously scrutinized media coverage and summarized scientific articles in detail. Thus, XRAY was born.

XRAY is led by the FORCE education team and has become a vehicle for increasing access to healthcare information to the public. The program reviews media coverage of science by fact-checking the piece and communicating how relevant the research is to their community’s care. Articles are scored on the following categories: relevance, scientific strength, quality of writing, and how far along the subject is in the research timeline. A particular focus is placed on guideline-changing resources because, according to Dr. Friedman, these explain how scientific findings influence patient care.

XRAY’s content production is no small feat. The team spends up to 40 hours producing each of their reviews. Dr. Friedman summed up the required hours put into these reviews: “It’s not easy to take a complex science, like genetics, and write it up in plain language, as most genetic experts know.” As public confidence in science has declined in recent years, those hours have become increasingly consequential. In a recent study from the National Science Foundation, trust in medicine has dropped since 1998, from 45% of respondents saying they have a “great deal of confidence” in medicine, to just 37% saying the same in 2018.

“Back when we first started our XRAY program we did a survey,” Dr. Friedman recalled, “One of the things we learned from people is that there’s a lot of trust for the CDC. I think over the last few years, there has been an erosion of trust in science and public health and that’s alarming.”

Through the XRAY program, FORCE has helped its community maintain their trust in science media by relaying and scrutinizing scientific research in an easily consumable format. In addition to posting XRAY content on their website, they also share XRAY reviews through partners using syndicated content. Syndicated content is a method an entity may use to share content by allowing it to be republished across other platforms. This allows organizations to share the reviews seamlessly without having to recreate the content themselves.

“We want as many eyes on the program as possible, it’s kind of a perfect solution to getting that information out there into the community,” Dr. Friedman

The work that FORCE has done through its XRAY program is focused on increasing the accessibility of public health information to the masses. If you would like to learn more about the XRAY program, a link to their content can be found here (www.facingourrisk.org). Beyond XRAY, FORCE has cultivated a virtual village of resources to support the hereditary cancer community. Their website is constantly updating general information to maintain the most recent and relevant information. For those in need of personalized resources, FORCE offers a toll-free and confidential helpline to connect people with volunteers who provide support, including connecting callers to a genetic counselor who can field questions they may have about their condition. Their peer navigation program hosts trained volunteers who help connect cancer survivors, high-risk “previvors,” and caregivers to resources that can help personalize their care.

FORCE also prioritizes community building through message boards, private Facebook groups, and Zoom support meetings. Through these mediums, different groups of people can attend support meetings that provide more personalized support for their specific needs. Some of these groups are those conducted in different languages, like American Sign Language (ASL), and Spanish. Others provide a community setting for people of color, caregivers, Pre-vivors, and Lynch Syndrome patients. Dr. Friedman summarizes it well, “We really want to make sure that our meetings meet the needs of our community.” FORCE operates as a non-profit, meaning most of its programs are free. Some programs charge a nominal fee, but even so, there are scholarships provided to make programs as accessible as possible. One of these such programs is Hill Day, which trains people to be public policy advocates. To Dr. Friedman, accessibility is a clear priority, “We provide scholarships for people for whom that would be a hardship because it’s really important to us to make sure that our services are available.”

No matter what the circumstances, hereditary cancers put the ultimate burden on the patients and families involved. As care and education evolve, removing as much as possible from patients is crucial for improved quality of life. Accessibility is the starting point for those in need of support and life-changing services surrounding hereditary cancers. On that front, FORCE is a resource for patients and families that can be counted on.

About the Author: Christian Pareja, 2022 Clover Genetics Genomics Correspondent Intern Christian is a graduate of Butler University where he received a BS in Biology and minors in Neuroscience and Psychology. He is studying to be a genetic counselor at the University of Utah and will be part of the 2025 graduating class.

A special thank you to Dr. Sue Friedman for sharing her passion with Clover Genetics and for the great service provided to the community by FORCE. Additionally, thank you to Aaron Hidalgo, our principal interviewer, and former Clover Genetics 2022 Genomics Advocacy Intern, for conducting a fantastic and insightful interview with Dr. Friedman.

Find out more about FORCE, the XRAY program, and the host of other resources of education, support, and advocacy on their website.