Research
GOAL
To strengthen and support cancer research along the lifespan to reduce the cancer burden in California.
NARRATIVE
The purpose of this chapter is to raise awareness of, access to, and participation in cancer research, with special emphasis on minority and underserved populations.
Research is the process of asking a scientific question in response to specific questions about nature, health, or disease. As related to therapeutic clinical trials, research is crucial as it provides evidence-based guidance regarding the prevention, early detection, regular screening, information on the latest treatments available, and hopefully, control of cancer.
Clinical studies address research questions to improve the prevention, diagnosis, and treatment of cancer. Participation by minority groups and underrepresented individuals is essential for these populations to benefit from the scientific advances and promises offered by precision medicine and other advances in cancer care. However, significant challenges need to be addressed. Although it is estimated that 20% of adults diagnosed with cancer may be eligible to participate in clinical trials, fewer than 5% enroll each year. Representation of minorities is even lower.
Enrollment of ethnic/racial minorities in clinical trials has become even more urgent given the availability of new immunotherapies that could save lives. Concerns exist regarding the interpretation of trial results. These may not necessarily reflect true tolerability or the potential efficacy of an agent that has not been tested among minority patients. Low participation could also be due to factors that range from lack of awareness among community members and health care providers, health insurance, language, and cultural differences, for transportation or childcare expenses to participate in the trial. Some patients may be suspicious and mistrust the motivations or intentions or the process or priorities of the researchers. Given several situations of abuse in research that have impacted minorities, this is no surprise.
COMMUNITY-BASED PARTICIPATORY RESEARCH (CBPR)
CBPR ensures research studies results will have a direct positive impact on the communities where the research is conducted. By involving community members in the process, researchers can design and conduct studies relevant to the people who participate in the research studies. Whenever CBPR research is not a suitable inquiry method, community-engaged research may provide insights into the best ways to approach and recruit members. Community-engaged research is a mechanism by which academic partners establish a meaningful and ongoing collaboration with the population of interest to ensure that the research is relevant and needed in the community; and conducted responsibly and respectfully. It engages communities at different times during the research process.
The following objectives do not currently have identified baseline measures and may be established as part of an implementation plan.
Objective 1:
Encourage minority participation through community-based participatory research (CBPR) that involves community members and stakeholders from the beginning stages through all aspects of the research process, (i.e. study design, implementation, study completion, and disseminating the research findings).
Data Source: TBD
Strategies
Raise awareness about clinical trials and CBPR and monitor progress in inclusion of diverse populations in clinical trials and engagement in therapeutic trials in particular with implications for diverse populations related to precision medicine-oriented efforts.
Emphasize improving access to and participation in clinical trials by those disproportionally affected by cancer by focusing efforts on promoting the inclusion of diverse population groups in clinical trials/bio specimen studies.
Improve access to and participation in cancer clinical trials and CBPR, particularly for Californians disproportionately affected by cancer.
Provide cultural competency training to health care providers to address the needs of minority and underserved populations to increase their referral to cancer clinical trials.
Strengthen the cancer research infrastructure
Stakeholders should address gaps in communication and coordination among cancer research programs, institutions, and other entities and the limited availability of, and access to, statewide information on clinical trials and CBPR to strengthen its research infrastructure.
Objective 2:
Establish the foundation for comprehensive, statewide cancer research efforts that will benefit all Californians through promoting collaboration, consolidating cancer research information, and making use of the latest technological developments (e.g., electronic medical record capability of community-based physicians).
Data Source: TBD
Strategies
Develop a comprehensive, community-
Form a statewide cancer clinical trials advisory committee made up of cancer researchers, advocates, and representatives from cancer clinical trials entities to discuss the development of a comprehensive clinical trials database to collect California-specific screening and enrollment data, establish a baseline for clinical trials enrollment, and monitor progress in increasing clinical trials participation.
Improve translation of the basic research into public health initiatives and informed policy, which includes educating and informing community members, health care professionals, decision makers, policymakers and opinion leaders about cancer research through outreach, engagement, and dissemination of most recent findings in cancer research.
Develop an infrastructure of “on the ground” community advocates, patient advocates, community health workers and promotores de salud that represent local communities and train them to sit on advisory committees and engage in research projects and as reviewers of research.