1. Eastman, Peggy

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Against a backdrop of challenges posed by the ongoing pandemic, the Association of Community Cancer Centers (ACCC)-in collaboration with Stand Up to Cancer-has released a report from a virtual 2-day summit for achieving equity in community oncology research.

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The stated goal of the summit, hosted by the ACCC Community Oncology Research Institute (ACORI), was "to highlight the importance of diversifying clinical trials and to identify concrete strategies for engaging patients, caregivers, and their communities to strengthen oncology research across the United States." The summit produced action items which are designed to "provide a foundation for a comprehensive plan to create systemic change in community oncology research."


On Dec. 21, 2021, the ACCC released a statement affirming its commitment to equity, diversity, and inclusion in cancer care and delivery, including equitable access to cancer clinical trials. The summit underscored the fact that there is much room for improvement in achieving equity in community cancer research, especially when it comes to patient engagement in the process. As previously reported by Oncology Times, strong patient involvement helps to achieve cancer care equity.


The first day of the summit, held this past September, featured four panel discussions among expert speakers from a range of backgrounds across the cancer research spectrum. Panelists stressed the need to understand that historical injustice and bias play a significant role in the inequity of cancer care and research; the need to invite patients in underserved and marginalized communities to be trial participants; the value of trust; and the importance of social determinants of health in determining trial participation.


The summit report emphasized that the costs of trial participation for patients (for transportation and childcare, for example), are vitally important. "Failing to acknowledge these costs will make it more difficult to engage a diverse population," the reported stated.


The second day started with a presentation from Stand Up to Cancer highlighting a new research initiative to advance health equity in colorectal cancer screening, and a collaborative campaign with Hip Hop Public Health to spread awareness about the need for colorectal cancer screening, specifically in Black and Hispanic/Latinx communities.


Then, following discussions, summit participants joined breakout sessions to identify action items for the ACCC, oncology programs and practices, and industry sponsors and stakeholders involved in cancer research. Some 120 summit attendees from more than 60 organizations participated-including the American Society of Clinical Oncology, FDA, and American Cancer Society Cancer Action Network-generating more than 200 ideas for making oncology research more diverse, equitable, and accessible.


ACCC Immediate Past President Randall A. Oyer, MD, whose presidency stressed the importance of community cancer research, served on the summit planning committee. A practicing oncologist at the Ann B. Barshinger Cancer Institute, he is Medical Director of the cancer institute, Medical Director of Oncology, Chairman of the Cancer Committee, Chair of the Oncology Physicians Advisory Council, and Medical Director of the Cancer Risk Evaluation Program at Penn Medicine Lancaster General Health.


As previously reported by Oncology Times, the theme of the current ACCC President, Krista Nelson, MSW, LCSW, OSW-C, FAOSW, is Real-World Lessons from COVID-19: Driving Oncology Care Forward. She is Program Manager of Quality & Research, Cancer Support Services, and Compassion at Providence Cancer Institute.


"Not only did the pandemic lead to sharp drops in cancer screenings and diagnoses, but it interrupted the ongoing treatment of many existing patients," Nelson said, noting that cancer programs are in "different phases of recovery" from these interruptions.


Before the panel discussions began, the ACCC presented the results from a survey of its members, many of whom were participating in the summit. Those results showed that 45 percent of responding organizations do not engage patients in cancer research design and conduct. Of those that do, only 21 percent engage patients through community partnerships. The survey found that community cancer programs, which comprised 71 percent of respondents, reported limited diversity among enrolled trial participants, limited access to information about which trials could be opened at their site, and difficulty recruiting patients.


"These results underline the importance of supporting oncology programs and practices in their efforts to engage the community and of identifying the most promising strategies for improving diversity in research participation," the summit report states.


Action Items for ACCC

Among the major action items identified by summit participants are the following:


1. Ensure that patient experiences and perspectives are embedded in all phases of cancer research at oncology programs and practices by collecting and sharing patient experiences and identified needs. "Hardwire" the inclusion of patients into ACORI and ACCC's work through formalized roles within the organizations' structure.


2. Strengthen connections between oncology programs and practices and relevant stakeholder organizations by convening all pertinent parties, creating mentorship and networking opportunities, and hosting working sessions to share best practices in order to build capacity and formalize the process of incorporating patient and caregiver feedback into research. Advocate to other stakeholders on the needs of oncology programs and practices doing research.


3. Engage oncology programs and practices, community organizations, academic institutions, patient advocacy organizations, and industry sponsors on the importance of patient and community involvement in research. Strategies might include clarifying the process, timing and roles of each stakeholder; creating online platforms between researchers and community cancer programs and research staff; and maintaining or contributing to repositories of community organizations for partnership and oncology programs and practices that are ready to conduct research. One specific suggestion that emerged from the summit is to develop a "community oncology research blueprint" to help oncology practices get started with research.


4. Develop and actively share-in partnership with stakeholders-tools and resources that oncology programs and practices can use to more effectively incorporate the patient and community perspectives into their work. High-value resources include tools for patient and community engagement, conducting high-quality needs assessments, finding and implementing research opportunities and case studies of best practices for community-based cancer research studies, and making the case to their own leadership on the importance of research in the community cancer setting.


5. Advocate for more diversity and representation in clinical trials consistent with the burden of cancer, through engagement with state and federal governments on topics such as funding for implementation of research in community oncology, prioritization of research projects, and the need for flexible telehealth for research. Advocate with industry sponsors to co-develop targets and support partnerships with diversity in mind.



Action Items for Programs & Practices


1. Engage the community and intentionally understand its needs, barriers to participation in research, and community assets that can be leveraged to improve trial enrollment and retention. This can begin with a community needs assessment that focuses on equity and inclusion, using multiple methods of engagement with community leaders and organizations, and partnering with other stakeholders to more effectively support the patient and community experience.


2. Engage directly with patients and caregivers to ensure that their experiences and perspectives are embedded in the entire research process, from enhancing research awareness to involving patients and patient advocacy groups in the total research process. This patient engagement should include designing the study question, protocols, and implementation plan (if applicable) and effective methods to propose that all eligible patients participate in clinical trials. This could also mean soliciting feedback through the entire trial, including patients as co-investigators or creating a patient-centered research dissemination plan. In addition to offering all eligible patients the option to participate in clinical trials, patients should be systematically asked if they would be interested in future trials if they are not currently eligible. One specific suggestion is to set up a phone line for patients in trials to provide feedback about what worked for them and what did not.


3. Build capacity to conduct equitable and patient-centered research by focusing on long-term sustainability, including ensuring that providers have the financial resources and schedule flexibility to engage in research, advocating with industry for more equitable research methods and investing in additional resources, such as technology, to support diversity in enrollment and retention.


Action Items for Other Stakeholders


1. Target and partner with underrepresented clinical trial sites, such as oncology programs and practices serving understudied and underserved patients, by sharing decision-making tools and processes; identifying priority sites and targeted populations and/or geographies; and developing additional resources to help sites plan for inclusive research practices and increase diverse patient participation and retention.


2. Identify and work with historically underrepresented communities to support their engagement with research and ability to participate in clinical trials by creating tailored resources for clinical trial participants, their caregivers, and patient advocates and increasing resources that cover trial volunteers' out-of-pocket costs. Specific suggestions from the summit to increase community engagement include developing partnerships with community centers, cultural centers, barber shops, faith-based organizations, and social service organizations. Town halls, videos, social media posts, and patient stories are means of building patient engagement.


3. Engage patients to better understand and embed their perspectives into trial design and implementation, from gathering their ideas on protocols, diversity plans, and clinical research programs to designing with inclusive principles.


The summit addressed an underlying problem identified by Oyer. At the time of his election as ACCC president, he said: "We have a serious imbalance in our clinical trials work. Our patients are in the community, yet the trials are at academic medical centers. And I believe that ACCC is uniquely suited to change that."


Peggy Eastman is a contributing writer.