California Initiative to Advance Precision Medicine Reducing Cancer Disparities Through Innovative Community-Academic Partnerships
The objective of this project is to develop, implement, and evaluate a Community Health Worker (CHW) approach that increases access to precision medicine at every stage of cancer care. Led by Manali Patel, MD at Stanford University.
Background
Low-income and minority populations experience disproportionately high rates of cancer incidence and mortality, lower rates of evidence-based cancer care, and increased rates of untreated symptoms compared with non-minority patients. Partnering with communities to design and apply approaches or interventions that take into account the specific linguistic, cultural, and financial realities of low-income an minority populations can optimize cancer care for these communities that the interventions will serve. Such customization is a hallmark of precision medicine. The objective of this project is to develop, implement, and evaluate a Community Health Worker (CHW) approach that increases access to precision medicine at every stage of cancer care.
Community Health Workers
Community Health Workers (CHWs) are lay members of the community who work either for pay or as volunteers in association with the local health care system. CHWs usually share ethnicity, language, socioeconomic status, and life experiences with the community members they serve. Different groups or communities may refer to CHWs by different names, such as community health advisors, lay health advocates, promotoras, outreach educators, community health representatives, peer health promoters, and peer health educators. CHWs offer interpretation and translation services, provide culturally appropriate health education and information, help people get the care they need, give informal counseling and guidance on health behaviors, advocate for individual and community health needs, and provide some direct services such as first aid and blood pressure screening.
Project
Breast cancer is the leading cause of cancer death among Latinas in California. Understanding hereditary cancer risk can help improve screening and detection by identifying women who should start screening at an earlier age and receive screening more often and with more accurate methods. This project aims to better understand which genetic variants cause Latinas to develop breast cancer, and to increase community awareness of hereditary cancer and genetic testing.
Community Advisory Board
The project first established a Community Advisory Board (CAB), composed of dozens of stakeholders from a variety of sectors including industry, government, public and private health care and clinic systems, along with advocates and survivors. The research team hosted several CAB meetings in 2020 (all held virtually due to the pandemic) and distributed newsletters to provide regular project updates to the CAB members. The research team is conducting periodic evaluations to objectively measure the ongoing success and engagement of the CAB.
Identifying Barriers to Care
In order to design an intervention, the researchers on this team planned to gather input and identify barriers to cancer care by conducting a series of in-person focus groups. First, they developed guidelines for conducting focus groups with two types of populations: community members undergoing cancer prevention and screening; and patients already diagnosed with cancer, and their care teams. The researchers also developed a guide for conducting a standardized interview with other stakeholders–including clinical staff–to obtain feedback on project implementation.
In light of COVID-19, Dr. Patel's team completed a single focus group for 12 care providers. Several major themes arose from this focus group, including:
- Latino patient populations and other non-English speaking populations lack the resources necessary to navigate health systems;
- Low-income and minority patients experience significant language and financial barriers after a cancer diagnosis;
- High-quality care for patients undergoing treatment requires extensive coordination; and
- Discussions with patients about cancer care and genetic and molecular testing work better when a CHW facilitates.
The project team interviewed 11 key stakeholders to obtain feedback on overall planned project implementation. These stakeholder interviews provided the team with insight about the local contexts, assets, and barriers to achieving cancer health equity in Monterey County. The interviewed stakeholders emphasized the need to focus on:
- Ensuring insurance coverage for screening and diagnosis services, specifically genetic testing;
- Providing outreach programs including health fairs and word-of-mouth community-wide programs; and
- Using CHWs to assist in these efforts.
COVID-19 Impacts
The COVID-19 pandemic prevented the team from holding additional in-person focus groups and interviews. The researchers eventually shifted to conducting interviews by telephone. The team also added COVID-related questions to the interviews, recognizing they could capture valuable data about the intersection of COVID and cancer care in minority communities by using the existing study infrastructure. Dr. Patel and her team also created two written surveys to learn more about unmet COVID needs.
In 2021, Dr. Patel and her team of investigators plan to work with the CAB and continue taking steps to design the CHW precision medicine cancer care intervention and lay the groundwork to implement and evaluate what they develop. Through their work, they hope to improve patients' quality of life and reduce disparities in precision medicine cancer care services.