CATERS | Community Members

Information and resources generated in response to our Community Café participants.

---

Genes are the instructions inside our cells that tell them how to work. We inherit our genes from our parents. When we talk about genes, we use the word “genetics”. Cancer happens when changes in our genes cause our cells to grow and multiply out of control. As cancer cells grow and multiply, more gene changes happen. 

Cancer genetics is the study of how changes in our genes can lead to cancer, helping us understand why some people are more likely to get cancer. We need to study a wide range of genetic changes across all different races and ethnicities. When we study only a few groups, we cannot understand all the genetic changes that can cause cancer.

Our team at Washington University School of Medicine is thrilled to partner with members of the Black and African American community and community health workers to increase diversity in cancer genetic research and services through the CATERS study. CATERS stands for Community Centered Approaches to Enhance Cancer Genetic Referral Strategies.  

What have we done?

During the first phase of the research study—Community Cafés—we partnered with Pallottine Retreat and Conference Center, Paraquad, Spanish Lake Community Association, and St. Louis Community College. These collaborations allowed us to provide supportive spaces for participants, many with personal or family histories of cancer, to share their perspectives on cancer genetics education, outreach, and research. We also engaged Community Health Workers (CHWs) to learn from their experiences in cancer-related outreach and education. So, you may be wondering…

What have we learned from you all?

Here are a few major lessons:

1. The community wants to see cancer genetics outreach in community spaces (i.e., libraries, schools, churches, etc.) and through different media platforms. This is important to capture the wide range of individuals – across ages, genders, education and reading levels, and varying degrees of technology access –that must be engaged in cancer genetics education.
2. As it regards cancer genetics research, the community wants to be engaged…
   • By members of your own community, whether that be including Black researchers on the research team or partnering with community health workers or health ministry. This representation and diversity are necessary for trust-building, cultural sensitivity, and awareness of such opportunities.
   • As partners who influence and guide the research (i.e. community café model)
   • Throughout the entire research project, receiving updates and having a direct line of communication to the research team until the end! We hear you!
3. Better resources/tools, incentives, access-considerations are needed to engage the Black community in cancer genetic research, testing, and education and to equip CHWs with the ability to help community members achieve this. Below is a list of resources we have compiled thus far in response to your feedback:

Resources (click each to expand)

For those who may currently facing a cancer diagnosis, please visit our PECGS resources page for additional support.

What are we doing right now?

With the lessons and ideas that participants shared regarding priorities for training topics, resources, locations, and key individuals to involve in cancer genetics outreach, we are using the summer to work with health literacy group HLM, Integrated Health Network, and the Community Health Worker Coalition to 1) Develop a plan for boots-on-the-ground outreach and 2) Develop trainings to equip CHWs with knowledge and tools needed to achieve this in their communities. The goal is to begin this Cancer Genetics training in Fall 2024, engaging CHWs across the St. Louis area. 

---