BY Deborah Carey, DSW, CSW, OSW-C and Cheri Tolle, MAEd, CHES
Community oncologists and staff play a critical role in connecting patients to research opportunities.1 Most patients receive care in community cancer centers.2 The trusting relationship among community physicians, nurses, and their patients creates a unique platform for introducing and explaining clinical trials.3 Because of their role, clinic staff can encourage a patient’s research curiosity and support a physician’s desire to utilize clinical trials in care. But when staff lack knowledge of clinical trials or hold negative or complacent views, their attitudes can inadvertently deter interest in clinical trial research.4 To ensure patients have access to clinical trial enrollment, the University of Kentucky Markey Cancer Center Affiliate Network (MCCAN) sought to increase clinical trial conversations at the community level.
The University of Kentucky Markey Cancer Center (Markey Cancer Center) is an NCI-designated Comprehensive Cancer Center, focusing on increased clinical research opportunities and ensuring high-quality cancer care throughout Kentucky. MCCAN is a collaboration between Markey Cancer Center and 20 community hospitals in the commonwealth. MCCAN assists sites with achieving and maintaining Commission on Cancer (CoC) accreditation, navigating patients to care, and educating local physicians and staff. MCCAN’s goal is to support local cancer programs, enabling patients to receive quality care close to home. Five MCCAN sites provide on-site clinical trial opportunities; however, many sites must refer patients to trials at Markey Cancer Center or other cancer centers. Although all sites meet CoC standards for clinical trial accrual, referrals to treatment trials remain low.
The Need for Education
MCCAN’s quality team works closely with sites to achieve compliance with CoC standards. Sites often report barriers to clinical trials, such as patient misconceptions, transportation costs, and physicians’ reluctance to refer. Since community clinic staff tend to live in or near the communities they serve and share similar beliefs, values, and experiences, we hypothesized that oncology staff attitudes and opinions about research are likely to resemble those of their patients. Additionally, because most treatment trials occur at a distant facility, community clinic staff have limited exposure to cancer research processes. Clinic staff’s lack of knowledge limits their ability to help patients understand what to expect from a clinical trial referral, and their discomfort with trials may unconsciously bias their conversations with patients. Even a benign comment, such as “I don’t know much about clinical trials,” risks stifling further conversations about research. Patients may assume that trials are not a worthwhile component of care because their oncology provider is unfamiliar with them. Even when physicians express interest in clinical trials, the clinic staff’s unfamiliarity with the process can deter referrals.
The MCCAN quality team’s personal experience in community oncology care highlighted the lack of clinical trial training in community cancer programs. Our team comprises 2 nurses, an oncology-certified social worker, and an oncology data specialist for a combined 60-plus years of experience in community oncology. Yet, none of us received clinical trial training prior to employment at Markey Cancer Center. A poll of MCCAN sites revealed a similar experience for most direct-care nurses and team members. Nurses reported being unfamiliar with trials and uncertain about what happens to patients once they are referred to a clinical trial. Many expressed a desire to have more clinical trial discussions with patients, but were unsure what to say or how to discuss trials effectively. We believed that increasing staff’s understanding of the purpose and processes of clinical trials would enable them to speak to patients in ways that encourage more clinical trial conversations.
Clinical Trial Referral Ambassadors
In 2022, MCCAN created the Clinical Trial Referral Ambassador program to help oncology staff at community cancer clinics open the door to clinical trial conversations by enhancing their basic knowledge of clinical trials, developing communication skills, and establishing facility-based clinical research goals. As ambassadors, program participants would serve as a conduit for clinical trial information and champion access to clinical research opportunities. MCCAN’s 20 sites were invited to enroll 2 ambassadors from each site in the program. Participation focused on nurses and clinic staff with direct care roles, anticipating that their increased clinical trial knowledge would positively impact patients and physicians. Participants completed an interest statement and secured supervisor approval for the program. The interest statements identified potential learning topics and ensured motivation for completing the training.
The year-long Clinical Trial Referral Ambassador program began with a half-day in-person workshop. The goal was to empower ambassadors with clinical trial knowledge and help them develop facility-specific strategies to increase access to clinical trials. A Markey Cancer Center clinical research nurse provided training, focusing on the purpose of research, the types and phases of trials, and research safety protocols. Conversation scripts were used to counteract traditional research myths and alleviate common patient concerns. The training nurse explained that the Markey Cancer Center research navigator shares the patient’s journey through the trial after a referral is made, including processes for informed consent and enrollment. Ambassadors also received a list of resources for obtaining patient-facing brochures and posters on clinical trials and learned to search for clinical trials through the Markey Cancer Center’s webpage. Safety in research was reinforced throughout the day, including the patient’s right to withdraw from trials and the benefits of the added oversight of the research team.
Following the in-person training, 2 virtual Clinical Trial Referral Ambassador meetings provided ambassadors with opportunities to discuss their referral barriers and progress toward their goals. Several participants reported physicians’ lack of interest in referring patients, while some shared patients’ concerns about participating in research. The virtual meetings allowed ambassadors to support each other and share ideas and resources. The meetings also provided the MCCAN quality team with the opportunity to address potential referral barriers that might arise between MCCAN sites and Markey Cancer Center. MCCAN celebrated the ambassadors’ work by recognizing their participation during the annual cancer care conference.
Our Results
Twenty-five staff from 15 hospitals participated in the Clinical Trial Referral Ambassador program. Most ambassadors were nurses, including several who worked as navigators. Overwhelmingly, participants reported that the program enhanced their knowledge of clinical trials and improved their ability to discuss research with patients and physicians as a care component.5 Many ambassadors secured patient-facing clinical trial pamphlets and posters for their clinic lobbies for the first time. Others honed their clinical trial referral processes, educating other staff and posting the process in the nurses’ station. One facility formalized a navigation process for clinical trial discussions with patients.
While the Clinical Trial Referral Ambassador program was well received by the ambassadors, the MCCAN quality team identified several areas for improvement. First, to create sustained change, we needed to plan for greater continuity between ambassador meetings. Several months passed between the workshop and the virtual meetings, which deflated some of the momentum from the initial training. Although email messages were sent to the ambassadors during this time, a more methodical approach for maintaining motivation was warranted. Secondly, we recognized that coupling the Clinical Trial Referral Ambassador program with a widespread clinical trial campaign could broaden the program’s impact. Increasing physician clinical trial education, highlighting clinical trial information during cancer committee meetings, and sharing the importance of clinical trial access to all staff, leadership, and physicians at MCCAN could leverage greater support for the ambassadors who are changing clinical trial processes and culture in their facilities.
Future Directions
MCCAN continues to support our affiliates in enhancing access to clinical trial opportunities. Over the past several years, MCCAN has focused on educating providers on specific trials and introducing sites to Markey Cancer Center researchers through in-person visits. We intentionally chose not to offer the Clinical Trial Referral Ambassador program in consecutive years to allow our teams to address other training requests from the different sites. During that time, many ambassadors have transitioned to new positions or facilities, leaving some knowledge gaps at MCCAN sites and necessitating the training of new ambassadors. Therefore, we are currently collaborating with communication researchers from the University of Kentucky to identify evidence-informed improvements and prepare for a potential new iteration of the Clinical Trial Referral Ambassador program.
Deborah Carey, DSW, CSW, OSW-C, is quality and education coordinator, and Cheri Tolle, MAEd, CHES, is administrative director at the University of Kentucky Markey Cancer Affiliate Network, University of Kentucky Markey Cancer Center, Lexington, Kentucky.
References
