ACORI Research Review: August 2022

At Siteman Cancer Center in St. Louis, Missouri, we are trying to better collaborate with our community to establish meaningful relationships based on trust. Specifically, we are working closely with federally qualified health clinics that provide education, initial screening, and diagnosis of patients in our local community. Along with these key community leaders and health volunteers, Siteman cancer care professionals are trying to better understand the barriers to receiving care at our NCI-Designated Comprehensive Cancer Center, as well as the barriers to participating in clinical trials.

Siteman has started to look at our clinical trial processes more closely so that we can avoid implicit bias in offering clinical trials to more patients. Hence, Siteman Cancer Center hopes to increase equity in trial participation with more real-world eligibility inclusion criteria that can allow therapeutic breakthroughs to be applied to all patients. Fortunately, we can all learn about creative ways to address these and other pressing challenges through the collaborative work done and presented at ASCO 2022.

• In light of the significant disparities in clinical research, ACCC and ASCO joined forces to pilot an implicit bias training program for clinical research teams and reported the outcomes in a poster entitled “Assessing feasibility and utility of an implicit bias training program for addressing disparities in cancer clinical trial participation.” The program was modeled after Duke University’s Just Ask™ program and consisted of virtual modules on diversity, equity, and bias in research participation. Surveys were conducted to assess participants’ knowledge and attitudes before and after the training, as well as a survey 6-weeks post-program to evaluate sustainability of changes. More than 100 individuals (126 total) from 50 research programs across the country participated in the pilot; 57% were from academic programs, 35% from hospitals or health systems, and 8% from private practice. The vast majority of participants (97%) were extremely satisfied or satisfied with the overall course content; most would recommend implementing the training program at their institution. The training was modified based on pilot participant feedback and is now available on the ACCC website at: Just Ask! Increasing Diversity in Cancer Clinical Research.
• As part of the joint initiative referenced above, ASCO and ACCC also developed a self-assessment for trial sites to evaluate the number of patients across races and ethnicities screened, offered, and enrolled into trials throughout 2019 and 2020. Sixty-two practice sites completed the self-assessment study; 61% were academic programs, 26% were hospitals or health systems, and 13% were independent cancer programs or practices. Most sites were unable to provide the data requested at each enrollment step in the assessment. The project found that most sites did not routinely collect data for screening, offering, and consenting patients to clinical trials. Sites with missing data either did not collect data at all, did not collect data in a systematic way, or reported it would be too burdensome to manually review charts to piece together data. Without these data, it is difficult to assess if trial sites are making progress in ensuring that patients have equitable access to research. ASCO and ACCC will continue to work with trial sites to develop these important data points. The self-assessment has been modified based on pilot participant feedback and is now available online.
• Shivakumar et al. co-authored a poster entitled “A collaborative, peer-based experience to support meaningful professional development in the evolving standards of care for HER2+ metastatic breast cancer.” This project assessed the effectiveness of a digital platform on providing education to oncology clinicians about updates in advanced HER2+ breast cancer. The platform, Gather-ed, was tested in 87 providers, 92% of whom specialized in hematology/oncology. Gather-ed uses self-study modules along with asynchronous group challenges and synchronous live group discussions to deliver concepts. 70% of learners completed all 5 self-study modules and 94% of participants reported that they either intended to make changes to their practice based on the program or that their current practice had been reinforced by the program. Participants noted that the live group discussions strongly impacted their intended practice changes. The program demonstrated high engagement levels, with an average of 6 platform interactions per learner. Overall, the Gather-ed platform led to significant professional development for oncology providers who treat advanced HER2+ breast cancer patients.
• Another poster, entitled “Building a multidisciplinary consortium in Iowa to advance genetic counseling and testing in patients with cancer,” showcased an initiative developed by the Iowa Oncology Society in partnership with ACCC that focuses on optimizing genetic testing and counseling in oncology patients. The Iowa Oncology Society formed a multidisciplinary consortium that carried out various activities to identify barriers and determine best practices in conducting genetic testing and counseling. These activities consisted of focus groups, educational lunch and learn sessions, a working group meeting, and a podcast. The initiative revealed several important opportunities for improvement, such as: implementing creative ways to collect patient history and screen for hereditary cancer syndromes; using more effective education materials when discussing genetic counseling; improving language regarding somatic vs. genetic test results; and forming partnerships with local genetic counselors or organizations that offer telehealth services. The Iowa Oncology Society will continue to build on this work by developing additional programming and by advocating for certified genetic counselors to be recognized as healthcare providers to increase access to genetic counseling.
• Boehmer et al. investigated disparities in bladder cancer by conducting a claims analysis of Medicare patients with bladder cancer over a 24-month period. Of the 4,356 patients identified, 28% were diagnosed at later stages and these patients incurred substantially higher out-of-pocket costs compared to patients diagnosed at early stages. For both groups of patients, the month of diagnosis is the most expensive, with 53% of all costs in that month going towards cystoscopy/TURBT procedures. The abstract, entitled “Using real-world data to assess variations in cost and healthcare utilization for patients diagnosed with bladder cancer,” concluded that earlier diagnosis of bladder cancer is essential towards not only improving outcomes but also reducing financial burden for these patients.
• Burnout has been a common topic lately among healthcare workers, with oncology providers being no exception. In 2021 and 2022, ACCC addressed the issue of burnout in multidisciplinary oncology care team members through professional development opportunities, such as expert-led mindful meditation, virtual “Coffee Chat Learning Sessions,” and podcast episodes on well-being and resiliency. The program was presented in a poster entitled “National organization addresses multidisciplinary oncology team burnout and resiliency through multifaceted presidential theme education initiative.” Some examples of coffee chat topics included training for new staff and mentorship, integrative care for patients, strategies to address staff burnout, community service and giving, and more. Across the virtual coffee chats, meditation series, and podcast episodes, ACCC reached thousands of cancer care team members. This program served as a valuable resource to oncology providers to promote resiliency and improve well-being in a challenging time.

The panel commenced with a review of survey results from the National LGBT Cancer Network, which found that LGBTQ+ members of the Hispanic/Latinx community generally had poor experiences in their cancer care, reporting many gaps in medical and psychosocial care throughout their active cancer journey and into survivorship. As a Latinx and LGBTQ cancer survivor, Olga shared that sometimes non-binary individuals feel afraid to see certain providers; for example, going to the gynecologist may be a struggle for someone who does not identify as female. These types of concerns can be difficult for patients to express if they do not have a strong relationship with their provider. Initial appointments are critical for establishing trust with a patient and recognizing assumptions that can damage trust is an important skill for providers to develop. For instance, it is not uncommon for providers to have assumptions on whether a patient can make it to an appointment due to lack of transportation, difficulty taking time off work, or lack of childcare, among other reasons, or whether a patient’s guest is a spouse, sibling, or other individual. Open dialogue is necessary to remove these barriers and ensure that trust is built from the first meeting with the patient.

Many disparities in social minority populations are difficult to quantify due to lack of data. Part of the issue is that our electronic health records (EHRs) have not been set up to collect information such as sexual orientation or gender identity, although many EHRs are now integrating gender identity into patient demographics information. Another key issue is the need for more training and education for healthcare providers about the needs of LGBTQ+ patients, to reduce stigmatization and raise awareness around implicit biases. One study found that oncologists reported very low levels of knowledge and comfort with treating transgender patients. There are also many assumptions around queer communities, such as if those who have breast cancer want reconstructive surgery, or whether queer patients want to talk about fertility preservation. Even one or two interactions in which the patient feels stigmatized by the provider can decrease the likelihood of the patient attending follow-up appointments. Moreover, many providers are still uncomfortable broaching conversations regarding gender identity, sexual orientation, or lower socio-economic status. Remaining uninformed or unengaged in the care of disenfranchised patients is a disservice to these communities and will continue to perpetuate disparities. Panelists emphasized that it is time for a change. Medical education should be redesigned to train clinicians to understand new social constructs and approach each patient based on their unique circumstances.

Pharmaceutical companies also share in the responsibility of embedding cultural awareness and social sensitivity into the design of new therapies and clinical trials. Dr. Pazdur shared a story about a new drug being evaluated that had significant toxicities at a particular dose but was deemed “tolerable” by the pharmaceutical manufacturer. When asked who reported that the drug was tolerable, the company claimed that the investigators did; the patients were not even part of the discussion. This represents a common scenario in medical research and highlights a critical opportunity to assess how treatments are currently being evaluated.

While oncologists have traditionally valued duration of survival as the most important efficacy endpoint, many patients may prioritize the quality of their lives. Providers need to discuss with each patient what “quality of life” means to them. Some may not value a longer life on a particular treatment if it means that the time they have will be spent ill or hospitalized. These conversations need to be conducted during the initial meetings with patients to build trust and optimize shared decision-making throughout their cancer journey, especially with underserved populations who may not have routinely received this type of open communication.

In many cases, underserved patients, such as those living in the intersectionality of Hispanic/Latinx and LGBTQ+, may delay or avoid care due to high costs and/or not having adequate health insurance. This gap further widens the healthcare disparities between these and other communities. Health insurance providers should examine the role that they have in improving accessibility to services to enhance equitable care. Disenfranchised communities need more insurance access to mental health programs and providers who are culturally sensitive.

The last theme discussed by the panel centered on the concept of “La Familia” and its significance in healthcare, particularly in the Hispanic/Latinx community. Individuals who are LGBTQ+ often become ostracized from their families, which introduces another challenge to these patients as they go through cancer care. For example, one panelist pointed out that in Miami, about 70% of the population is Hispanic/Latinx, with many of those individuals coming from places that are less accepting of LGBTQ+. Many of the patients who identify as Hispanic/Latinx and LGBTQ+ in Miami become disconnected from their families and many feel that they must endure their cancer journeys alone. It should come as no surprise that the loss of such a critical support system is a huge detriment to cancer care and outcomes.

This panel discussion highlighted many existing gaps in the cancer care of individuals who identify as both Hispanic/Latinx and LGBTQ+. Our healthcare system has a long way to go in advancing outcomes for underserved populations and ensuring that these patients receive the care that they deserve.