Participation In Cancer Research Research Articles

Gender inequity in cancer research leadership in Europe: Time to act

AimCancer is one of Europe’s key research missions, with gender equity a major policy pillar. To benchmark how well European countries perform for gender balance in cancer research, high quality intelligence is required. MethodsFor cancer research papers in Europe (EUR31; the 28 EU Member States plus Iceland, Norway and Switzerland) from two specific years (2009 and 2019), we evaluated the numbers of female authors overall and then the female last-author presence, as a proxy of female cancer research leadership. ResultsOverall, female authorship increased from 42% to 49%. In 2009, females represented 50% or more of cancer research authors in only five EUR31 countries. By 2019, that number had risen to 17. In Eastern European (EE) countries, females were more likely to be in the majority. The presence of female cancer research authors in the last (senior) author position increased from 24% to 34%. Five of the top six countries for female authorship in 2019 were from EE, whereas disappointingly four central European countries (Austria (AT), Czechia (CZ), Germany (DE) and Switzerland (CH)) were below the 25th percentile. A number of European powerhouses of cancer research (UK, DE, CH) underperformed in terms of female cancer research leadership. However, when cancer researchers from these countries worked abroad (e.g. Scandinavia, USA) the percentage of females was similar to that of their host countries. A factor potentially influencing female cancer research participation was availability and relative cost of child-care, which is more favourable in Scandinavia and EE than in central/western Europe. ConclusionOur data show that Horizon Europe’s Cancer Mission must ensure gender equity in its future research programmes and support the enhancement of female cancer research leadership opportunities.

Community Trust, Attitudes and Preferences Related to Participation in Cancer Research in South Carolina.

African American adults have the highest mortality rate for most cancers in the United States, and meaningful, community-driven research is needed to inform optimal strategies for addressing these disparities. Unfortunately, research mistrust, often driven by historical inequities, is well-documented among African Americans.This study explored trust, attitudes, and preferences regarding participation in cancer research activities among primarily African American and other medically underserved communities in South Carolina from August 2020 to December 2021. Trust was measured using the Trust in Medical Researchers Scale (TMRS).The mean TMRS score for all study participants (N = 179) was 26.54 (SD 7.57) out of 48 (maximum possible score). Significant differences in mean values of the TMRS scores were only observed for gender (p = 0.0056) and race (p < 0.0001), with White participants and males reporting higher levels of trust in medical researchers. Overall, 52.5% of participants were somewhat likely or likely to volunteer to participate in a cancer research opportunity, with White participants (73.81%) being more likely to participate in cancer research compared to African American participants (45.74%) (p = 0.0054). Furthermore, participants were most willing to provide saliva (80.85%) and urine samples (80.85%), new blood samples (60.64%), stool samples (54.26%), medical records or laboratory results (52.13%) and least willing to allow left-over blood, tissue, or other fluids from medical procedures to be used for research (50%).These results provide evidence of the need for concerted programmatic efforts to build trust in cancer researchers, particularly among females and African American adults.

Abstract 17: Cancer Control Through Surveillance: Harmonised Cancer Registration Guidelines for East Africa

Abstract Purpose: Implementation of evidence-based cancer control strategies requires cancer registration data. However, cancer registration in East Africa is characterized by disparities in quality and coverage; insufficient harmonisation of procedures; different laws/legislation that limit data access; lack of networking, collaboration, and participation in cancer research; and insufficient national government recognition and funding. This aimed to harmonize the cancer registration guidelines and establish a coherent framework for enhancing cancer registration in East Africa. Methods: The process of developing the “Harmonised cancer registration guidelines for East Africa” was participatory and engaged stakeholders from all the East Africa Community (EAC) member countries (Uganda, Kenya, Tanzania, Rwanda, Burundi, and South Sudan). Several strategies were used over a period of four years (2018-2021) including: 1) Partnership and leadership formation (the planning committee composed of the Ministry of Health officials and policymakers, the Steering Committee composed of experts in cancer registration, and the writing team); 2) review of relevant literature on cancer registration guidelines; 3) conducting a SWOT analysis of cancer registration in East Africa, and 4) holding three harmonisation conferences. Results: The East African Cancer Registration Guidelines were harmonised under the stewardship of the East African Center of Excellency for Oncology at the Uganda Cancer Institute (UCI) and were approved by the East African Community Sectoral Council of Ministers of Health on 10th December 2021 (EAC/SCHealth/21/Decision 003) and a directive issued to all partner countries to use the approved guidelines (EAC/SCHealth/21/Directive025). Several outcomes were achieved including Commonly agreed-upon standards and processes for establishing and operationalizing cancer registries in the region; ownership of data and easy accessibility by the member states; and improved collaboration and networking among cancer registries in the region. The process also provided learning opportunities and was a catalyst for the individual countries that are now focusing on setting up their cancer registries. Conclusion: Forging effective partnerships, wide stakeholder involvement; use of locally generated data; and locally-driven solutions are essential for generating local policies and creating a sustainable leadership structure for directing the cancer control effort in the region. Citation Format: Annet Nakaganda, Henry Wabinga, Crispin Kahesa, Francois Uwinkindi, Jonas Nsengiyumva, Valerian Mwenda, Michael Katende, Jackson Orem. Cancer Control Through Surveillance: Harmonised Cancer Registration Guidelines for East Africa [abstract]. In: Proceedings of the 11th Annual Symposium on Global Cancer Research; Closing the Research-to-Implementation Gap; 2023 Apr 4-6. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(6_Suppl):Abstract nr 17.

A national survey of current scenario and future perspectives of cancer research in Brazil.

e18721 Background: Epidemiological and clinical cancer research are the backbone to understand tumor behavior and to develop new therapies in oncology. However, several countries including Brazil and many regions in the world have a very small participation in cancer research. Despite 625.000 new cancer cases recorded in Brazil in 2022, only 2,2% of ongoing cancer clinical trials are available in the country We conducted an online survey to describe physician engagement with research and to identify the main barriers precluding participation and conduct of clinical cancer research in the country. Methods: An anonymous online survey of 23 objective questions was sent by e-mail to members of the Latin American Cooperative Oncology Group (LACOG) and the Brazilian Society of Clinical Oncology (SBOC). The first 13 questions addressed demographic information, medical training, and previous research participation. In the second part, the main barriers to engagement and participation in clinical trials in Brazil were addressed. Continuous variables were measured by median and range. Analyses were performed using SAS statistical software (version 9.4; SAS Institute, Inc. Cary, NC). Results: 109 physicians answered the survey. Most participants were oncologists (N = 98, 89.9%), living in capital cities (N = 84, 77.1%), were from the Southeast region of Brazil (N = 63, 57.8%), worked at institutions providing exclusively private healthcare (N = 59, 54.1%). Of the 109 respondents, 83 (76.1%) reported working in research centers (as investigators or sub-investigators). Surprisingly, 31.2% of physicians recognized they invite less than 1% of their patients to participate in clinical trials, even though 98 (89.9%) considered the participation of patients in clinical trials extremely relevant. The main barriers compromising conduct of research in the country were low number of available trials proposed by pharma/Clinical Research Organizations (48.2%) and the lack of qualified human resources to staff research sites (22.9%). Other reported barriers were the lengthy regulatory approval process (42.2%), followed by lack of awareness of clinical research by patients resulting in low recruitment rates (24.1%). Of the 26 (23.8%) respondents not working with research, 25 (96.1%) reported interest in being involved, 31.8% have tried participating in research, and 62.4% reported limited knowledge of trial procedures. Conclusions: These results suggest a clear need to further engage physicians in clinical research activities in Brazil. Patient education strategies should improve the low recruitment rates and secondarily increase the number of proposed trials to the country.

Abstract 5525: Community cancer research advocates: Helping underrepresented minority groups become research ready

Abstract Even though certain racial/ethnic minority groups get cancer more often, are diagnosed at younger ages, and are at risk for earlier death, clinical trials fail to include adequate proportions of representatives from these groups. Encouraging equitable participation in research becomes an important tool in the fight against cancer disparities. Therefore, we co-created with community representatives a graphic-style story entitled “Research Ready” that is used by trained Community Research Advocates (including some survivors or family of survivors themselves) to hold brief discussions to help eligible hesitant participants to learn the 3 P’s: the purpose of cancer research, how they are kept safe while participating, and why people from diverse backgrounds are needed to participate. Importantly, advocates use a Research Review activity to discuss factors that influence their willingness to participate as well as identify questions they have for the research study’s staff. Focus group and survey-based evaluation data show these discussions to be useful in increasing hesitant patients’ willingness to consider participation in research and increase perception of safety. Advocates too appreciate the opportunity to serve. While this pilot is small, additional partnerships within the University of Cincinnati Cancer Center to expand the program will be developed. Future partnership with a community patient navigator program will also enable additional support and transportation to research appointments. Collectively, we anticipate that this program will ultimately support hesitant patients’ decision-making and improve cancer research participation particularly among racial/ethnic minorities. Citation Format: Sarah Been, Susan Gertz, Susan Hershberger, Melinda Butsch Kovacic, We Engage 4 Health Community-Academic Partnership. Community cancer research advocates: Helping underrepresented minority groups become research ready. [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 5525.

Summer Clinical Oncology Research Experience (SCORE) Program: Engaging Undergraduates from Diverse Backgrounds in Cancer Research.

Diversifying the future cancer research workforce requires that students engage in cancer research, persist in paths toward science, technology, engineering, mathematics, and medicine (STEMM) fields, and choose cancer research careers. The Summer Clinical Oncology Research Experience (SCORE) Program at Memorial Sloan Kettering, designed in 2010 to engage undergraduate (U) and post-baccalaureate (PB) students from diverse backgrounds in cancer research, is an 8-week summer program pairing an U or PB student with a faculty mentor to conduct cancer research. We report demographics and career paths for 2010-2019 SCORE students. Of 116 students, 112 (97%) attended public universities, and 75 (64%) were in their first 2years of college. Race/ethnicity was Black/African American, 20 (17%); Hispanic/Latinx, 15 (13%); multiracial, five (4%); Asian, 40 (34%); White/Caucasian, 36 (31%). A total of 112 (97%) identified as female; 47 (41%) were first-generation college students, and 85 (73%) were from immigrant families. As of 2021, 114 (98%) persisted in paths toward STEMM careers: 44 (38%) medical school (MS) students, 14 (12%) residents, two (2%) practicing physicians, 12 (10%) pursuing non-MD STEMM advanced degrees, 21 (18%) working in non-MD STEMM fields, 17 (15%) applying to MS, and 4 (3%) U science majors. Cancer research participation significantly increased from 5% pre- to 84% post-SCORE. A total of 63/116 (54%) students subsequently co-authored 152 peer-reviewed publications, including 105 (69%) in oncology. SCORE engaged underrepresented U and PB students in cancer research, and 98% of these students persisted in paths toward STEMM careers. Long-term follow-up is needed to assess the enduring engagement of these underrepresented students in cancer research.

Participation in cancer research in BNSSG, England: A Health Equity Audit 2021.

1565 Background: Cancer is a cause of health inequalities, and nationally, patients from deprived communities have lower participation rates in cancer research. Equitable access to research benefits patients, healthcare organisations and improves applicability of research. Methods: We undertook a health equity audit of participation in cancer research (trials and non-trials based) in Bristol, North Somerset and South Gloucestershire (BNSSG), England from 1.4.2019-30.3.2020 using data from the Acute Trust patient datasets. Comparison cohorts were extracted from a regional primary care dataset (the system wide dataset). Firstly, an incident cancer cohort: diagnosed from 1.11.2019-1.10.2020. Secondly a “living with cancer” cohort: cancer flag in the 5 years prior to 1.7.2021. Deprivation is measured by IMD of home postcode small area (LSOA). Results: Results are presented for the audit in the table below, with 95% confidence intervals where appropriate. Compared to people newly diagnosed with cancer, adults aged 70 or older were 56% less likely to take part in research (OR 0.44, 95% CI 0.39-0.51), and adults aged 80 or older were 77% less likely to take part in research (OR 0.23, 95% CI 0.18-0.29). Compared to people newly diagnosed with cancer, people from the most deprived 20% of the population were 27% less likely to take part in research (OR 0.73, 95% CI 0.88-0.92). The most deprived research participants were more likely to be younger, have one or more comorbidities and a recent emergency admission. Patients from outside BNSSG (18%) appear similar in profile to those from within BNSSG, including for deprivation. Better data are needed for other factors relevant to equity, including ethnicity and Inclusion Health. Conclusions: This health equity audit confirms and quantifies inequities in access to cancer research in our region. Under-representation of deprived and older patients appeared multifactorial in this audit, but further work to understand facilitators and barriers to recruitment is needed. These results are a call to action. [Table: see text]

Gender Disparities in Concerns of Cancer Research Participation During COVID-19 Climate.

The unprecedented threat of COVID-19 has taken its toll on the field of cancer research, with trial accrual rates seeing a sharp decline since the beginning of the pandemic. Recent evidence has suggested that decreased participation appears to be more pronounced in women than men, which raises concerns about an exacerbation of gender bias in research. The following manuscript is a commentary article to the recent study by Fox et al, who aimed at investigating the concerns of patients with regard to participating to cancer research, as well as examining potential gender disparities within their sample population. We provide a brief critique of their work, especially focusing on important limitations concerning sample size and under-representation of ethnic minority groups, before discussing their findings in light of current literature on gender differences in anxiety and risk perception, how this might be interpreted in the context of the current pandemic, and its impact on participation in cancer research. We present multiple lines of evidence which support the idea that women might experience greater anxiety during the COVID-19 pandemic which could have a significant impact on cancer research participation and consequently the external validity of studies in the field. The first attempts to tackle these challenges have shown promise, but further research is required to perfect this process and target those groups who are at greatest need of intervention.

C-CRES: COVID-19 and cancer research engagement study.

182 Background: Emerging reports suggest that continuation of clinical trials is feasible and safe even in hospitals admitting COVID-19 patients-given the appropriate safety procedures. However, to our knowledge no studies have yet addressed how to again engage patients in cancer research. C-CRES was developed to identify factors that may be affecting participation in cancer research during the COVID-19 pandemic. We aimed to examine patient-specific concerns around research participation. This information will help inform future strategies for mitigating the impact of COVID-19 on cancer research. Methods: Between 5-13 June 2020, we advertised an anonymous survey using our research group’s Twitter account and tagged a variety of cancer patient organisations/charities. Patients aged 18 with a current cancer diagnosis were eligible to participate and asked about their diagnosis/treatment, experience in cancer research, and beliefs about future cancer research participation given the COVID-19 pandemic. We specifically asked about potential concerns relating to research engagement. Results: A total of 75 patients filled out our questionnaire, of whom 89% were UK-based. 65% of respondents were male and the majority was of a white background (89%). The median age category was 60-69 years. 47% of patients had prostate cancer, 15% breast, 12% bladder, and 9% kidney cancer–a reflection of the cancer types our research team focuses on. Interestingly, 49% of participants had never participated previously in research. We therefore set out to make comparisons of patient concerns with regards to research participation during the COVID-19 outbreak between those with and without research experience. Those who had never taken part in research before were more likely to have concerns about currently being on cancer treatment (p=0.02) and about the type of cancer they had been diagnosed with (p≤0.05), with regards to taking part in cancer research during the current COVID-19 outbreak. Conclusions: Those with no prior experience of taking part in cancer research may be more likely to have concerns related to their cancer type and current treatment, in terms of participation during COVID-19. Efforts should be made to reassure potential cancer research participants about safety of participating during the COVID-19 pandemic.

A cost-effective approach to increasing participation in patient-reported outcomes research in cancer: A randomized trial of video invitations.

Maximizing participation in cancer research is important to improve the validity and generalizability of research findings. We conducted a four-arm randomized controlled trial to test the impact of a novel video invitation on participant response. We invited childhood cancer survivors and parents of survivors <16 years to complete questionnaires. We compared response rates to an invitation letter (control) vs receiving the letter plus a video invitation on a flash drive presented by a childhood cancer survivor, a pediatric oncologist or a researcher. We explored factors associated with viewing the video and examined the impact of enclosing the USB on study costs. Overall 54% (634/1176) of questionnaires were returned. Participants who received a video invitation on a USB were more likely to return the questionnaire than those who did not (58% vs 47%, P < .001). Participation rate did not significantly differ by video presenter. Forty-seven percent of participants who received a USB reported watching the video, of whom 48% reported that the video influenced their decision to participate. Participants with a lower income (OR = 0.43, 95% CI = 0.25-0.74, P = .002) were more likely to report watching the video. Participants who received a video invitation required significantly fewer reminder calls than those who only received a written invitation (mean = 1.6 vs 1.1 calls, P < .001), resulting in a 25% recruitment cost-saving for the study. Adding a USB with a video study invitation to recruitment packages is a cost-effective way of improving study participation. This is important in an era of declining study participation and underrepresentation of vulnerable populations in research.

Clinical trial awareness in oncology patients of diverse ethnic background: A single-institution analysis.

e19217 Background: Clinical trials offer several advantages to the patients including access to innovative treatments with improved survival rates, closer monitoring and follow-up with removal of health disparity; and aim to advance the science of medicine. Yet, worldwide enrollment rates in cancer clinical trials have been only about 5 percent, despite the fact that a significantly higher percentage of Americans have a desire to participate in clinical trials [1, 2]. We conducted a single institution study to gain knowledge about clinical trial awareness in our cancer patient population as well as to identify the barriers within provider-consumer communication that prevent enrollment. Methods: A 10-question survey was distributed by medical assistants and surveys (n=222) were collected at the end of each clinic visit. Responders included racial/ethnic minorities and underserved patients, representative of the ethnic diversity in the Staten Island Borough of New York City. Demographic data including age, gender, zip code, race and ethnicity were recorded. Additionally, Charlson comorbidity index and tumor stage was also recorded. Results: 159/222 patients (71.62%) completed the survey. Of these patients, 47 (29.55%) answered every question on the survey, while 112/159 patients (70.44%) answered only few of the questions. The completed surveys are linked by zip code to the different boroughs of Staten Island, which allows us to identify hubs with lack of clinical trial awareness knowledge. Conclusions: Despite the several advantages for patients and medical field, enrollment rates in clinical trials remain very low. Our study results help in gaining knowledge about clinical trial awareness among oncology patients, correlated to comorbidity and tumor stage. In addition, demographic hubs with lack of knowledge are identified as targets for community outreach and education. A multilevel approach will be developed to address identified barriers that exist for patients, and will be implemented at community level, to reduce ethnic bias in trial enrollment and increase trial participation among an ethnically diverse population.

Characterizing Inclusion and Exclusion Criteria in Clinical Trials for CAR-T Cellular Therapy Among Adults with Hematologic Malignancies

Introduction: Clinical trial development and enrollment are pivotal to advancing cancer outcomes. Novel treatment modalities such as Chimeric Antigen Receptor (CAR) T-cell therapy is an intensive therapy that has altered the landscape of hematologic malignancy therapies, with several FDA approvals based on Phase I-II studies. Strict eligibility criteria are implemented to ensure safety of trial participants; however, these criteria can lead to barriers to patient enrollment, hinder the generalizability of the study, and result in a population of participants not representative of those who would benefit from therapy. The aim of this proposal is to characterize inclusion and exclusion criteria in clinical trials for CAR-T cellular therapy in adults with hematologic malignancies. Methods: The U.S. National Library of Medicine's Clinical Trial database of privately and publicly funded clinical studies was accessed June 2019 to assemble a list of studies with the following filters applied: hematologic, recruiting, not yet recruiting, not recruiting, active, completed, suspended, terminated studies, interventional studies, CAR, CAR T, chimeric antigen receptor, CAR NK, adult, older adult, early phase 1, phase 1, phase 2, phase 3. From this, 95 studies populated, 84 were utilized in this study and 11 studies excluded due to non-hematologic malignancy. Results: We analyzed 84 CAR-T clinical trials targeting multiple diseases (Table 1) including; acute lymphoblastic (n=7) and myeloid leukemia (n=2); lymphoma (n=6); multiple myeloma (n=40); multiple hematologic malignancies (n=27) and other (n=2). The majority of studies were phase 1 (n=47) or phase 1/2 (n=28). Upper age limit restrictions were in place for 53/84 (63%) of trials. Trials included the AYA population (n=5), ≤ age 65 (n=1), ≤ age 70 or 73 (n=26), ≤ age 75 or 78 (n=12), ≤ age 80 or 85 (n=9). Of the 84 trials, 65 (77%) had performance status inclusion criteria, most commonly was status ECOG 0-2 (n=23) and ECOG 0-1 (n=24). Patients were excluded for a history of a separate or concurrent malignancy in 52/84 (62%) trials, CNS disease was excluded in 45/84 (54%) trials and 70/84 (83%) clinical trials excluded infectious diseases; HIV (n=69) and Hepatitis B/C (n=64). Many studies had restrictions for impairment in organ function; renal impairment (n=66), cardiac deficits (n=67), and abnormal pulmonary function (n=44). Unique to CAR-T trials, 27/84 had restrictions in place for neurological disorders: epilepsy (n=15), history of brain injury (n=10), dementia (n=8), coordination/movement disorder (n=6), cerebellar disease (n=8), psychosis (n=7), paresis (n=6), history of stroke/aphasia (n=21), and active autoimmune or inflammatory disease of the central nervous system (n=3). Conclusion: CAR-T cellular therapy is a tremendous therapeutic advancement in the medical community. This study emphasizes, in detail, highly variable cross-study inclusion/exclusion criteria for early phase CAR-T studies. This new and promising therapy is actively being studied in a highly select group of patients and may not be generalizable to the older adult with hematologic malignancies due to non-uniform trial criteria. The applicability of this modality should be tempered by the understanding that CAR-T trials have overt age caps, ambiguous performance and comorbidity exclusions, and neurologic exclusions and play a role in limiting patient accessibility to novel clinical trial therapy. Confirmatory prospective and observational studies of CAR-T therapy in representative populations are a high priority. 1. Brudno JN, Kochenderfer JN. Toxicities of chimeric antigen receptor T cells: recognition and management. 2016 127:3321-3330. Doi: 10.1182/blood-2016-04-703751 2. Kim ES, Bruinooge SS, Roberts S, et al. Broadening Eligibility Criteria to Make Clinical Trials More Representative: American Society of Clinical Oncology and Friends of Cancer Research Joint Research Statement. J Clin Oncol. 2017;35(33):3737-3744. doi:10.1200/JCO.2017.73.7916 3. Unger JM, Cook E, Tai E, and Bleyer A. The Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies. American Society of Clinical Oncology Educational Book. 2016; 36:185-198. Doi:10.1200/EDBK\_156686 Disclosures Wildes: Janssen: Research Funding; Carevive: Consultancy. Olin:Spectrum: Research Funding; Novartis: Research Funding. Artz:Miltenyi: Research Funding. Jaglowski:Unum Therapeutics Inc.: Research Funding; Kite: Consultancy, Other: advisory board, Research Funding; Juno: Consultancy, Other: advisory board; Novartis: Consultancy, Other: advisory board, Research Funding. William:Guidepoint Global: Consultancy; Defined Health: Consultancy; Techspert: Consultancy; Celgene Corporation: Consultancy; Kyowa Kirin, Inc.: Consultancy. Rosko:Vyxeos: Other: Travel support.

Exploring Asian Indian views about cancer and participation in cancer research: an evaluation of a culturally tailored educational intervention.

Asian Indians (AIs) are a growing population in the United States (US) with increased cancer incidence and mortality. However, screening rates among this population are low, and the population has been underrepresented in clinical research. This pilot study aims to address gaps in the literature in order to understand if a culturally tailored educational intervention will improve knowledge, risk perceptions, and awareness of cancer risk assessments among AIs. We delivered an educational intervention comprised of culturally tailored case studies describing risk factors for developing cancer in both males and females. We assessed knowledge gaps about cancer risk and genetic testing, cancer risk perceptions, and willingness to participate in medical research studies, pre- and post-intervention. Among 23 participants, knowledge of genetic testing use and screening recommendations significantly improved post-intervention, with increased willingness to discuss cancer with family members, participate in medical research, and undergo genetic testing for cancer risk assessment. However, findings at the 1-month follow-up time did not show significant changes, except for one knowledge item. Culturally tailored educational interventions, delivered in a community setting, can influence knowledge and risk perceptions about cancer risk and genetics among AIs. Our findings lay the groundwork to continue educational efforts in the area of cancer risk and genetic testing in the AI population, a growing population that has been understudied in the US.

Lifting Barriers to Improve Minority Participation in Cancer Research

Lifting Barriers to Improve Minority Participation in Cancer Research

Attitudes Toward Genomic Testing and Prostate Cancer Research Among Black Men

Black men are diagnosed with prostate cancer at nearly twice the rate of white men and are underrepresented in prostate cancer research, including validation studies of new clinical tools (e.g., genomic testing). Because healthcare system mistrust has contributed to these disparities for centuries, black men may be less inclined to pursue novel testing, and identification of facilitators to their participation in prostate cancer research studies remains warranted. A community-engaged approach involving a partnership with a community organization was used to conduct seven focus groups in Minnesota, Alabama, and California to explore black men's attitudes toward prostate cancer research participation and genomic testing for prostate cancer. Data were collected and analyzed from April 2015 to April 2017. Identified genomic testing barriers included a lack of terminology understanding, healthcare system mistrust, reluctance to seek medical care, and unfavorable attitudes toward research. Facilitators included family history, value of prevention, and the desire for health education. Lack of prostate cancer knowledge, prostate-specific antigen testing confusion, healthcare system distrust, and misuse of personal health information were barriers to research study participation. Some black men were motivated to participate in research if it was seen as constructive and transparent. Disparities for black men can both motivate and disincentivize participation depending upon a positive or negative view of research. Confusion over prostate cancer clinical care has fueled some mistrust among black men affecting both clinical care and research participation. With increased education, health literacy, and assurances of research integrity and transparency, black men may be more willing to participate in prostate cancer testing and research. This article is part of a supplement entitled African American Men's Health: Research, Practice, and Policy Implications, which is sponsored by the National Institutes of Health.

Minority patient reported attitudes regarding tissue donation and participation in cancer research.

6558Background: Minority populations are underrepresented in biospecimen banks created for cancer research, which has implications for future therapeutic approaches. Patients’ reluctance to donate ...

The Influence of Patient Identification and Narrative Transportation on Intentions to Participate in Cancer Research.

Cancer decision-making interventions commonly utilize narratives as a persuasive strategy to increase identification with the message source, promote involvement with the topic, and elicit greater willingness to adopt recommended behaviors. However, there is little empirical research examining the mechanisms underlying the effectiveness of this strategy in the context of cancer research participation. Data for the current manuscript were collected as part of a larger study conducted with cancer patients (N= 413) from the USA, UK, and the Republic of Ireland. Participants viewed and evaluated video-recorded vignettes, illustrating different strategies for discussing clinical trials participation with family members. Results showed nationality was a significant predictor of identification with the main character (i.e., patient) in the vignette. Unexpectedly, these cross-national differences in identification disappeared when patients currently undergoing treatment had higher perceived susceptibility of their cancer. Identification with the main character in the vignettes was a significant predictor of intentions to participate in cancer research, but only when the mediating role of narrative transportation was considered. The findings demonstrate the importance of considering how individual and social identities influence identification with characters in cancer narratives and yield practical guidance for developing arts-based interventions to increase cancer research participation.

Minority patient reported attitudes regarding tissue donation and participation in cancer research.

6558 Background: Minority populations are underrepresented in biospecimen banks created for cancer research, which has implications for future therapeutic approaches. Patients’ reluctance to donate biospecimens is perceived to be a potential barrier but is poorly studied. We present interim analyses of a survey to assess attitudes in a patient cohort comprised of racial/ethnic minorities. Methods: Patients filled out a validated 23-item survey [ J Cancer Educ, 2014. 29: p. 580-7] for this prospective cohort study approved by the Cleveland Clinic IRB. Surveys were provided in the outpatient oncology clinic of a Cleveland Clinic community hospital. Eligibility requirements included tissue diagnosis of any solid tumor malignancy in non-curative setting; age ≥ 18 years, ECOG PS 0-2, self-reported race/ethnicity as any other than non-Hispanic White, undergoing cancer therapy in the next 30 days. Data are presented for the first 90 patients surveyed in 2015-2016. Results: Median age was 69 years (range, 35-92). Only 24 (27%, 1 missing) had been asked to donate samples in the past; of those, 20 (83%) had donated. The majority (n = 60, 67%) were willing to donate samples. A higher proportion (75%) responded as being likely to donate samples if they learned more about the research and reasons for sample donation. A smaller proportion was likely to donate samples if they received money (30%) or health services (40%) in return. Many (55-73%) disagreed with negative statements such as, “I will be treated as a guinea pig,” and only (3-4%) disagreed with trust statements such as, “I trust sample banks/medical researchers/procedures.” However, 42% endorsed being “concerned that something like the Tuskegee study could happen again.” Conclusions: The majority of racial and ethnic minority patients in this study were willing to donate biospecimens for research, with an even greater likelihood of participation if appropriate rationales were provided. While systemic mistrust persists, the vast majority trusted medical researchers and procedures. Our findings suggest that underrepresentation of minorities in cancer biospecimen repositories, not likely attributable to patient reluctance, must be addressed to achieve health equity.

Racial/ethnic differences in comprehension of biospecimen sharing/banking: University of Rochester Cancer Center NCI Community Oncology Research Program (URCC-NCORP) nationwide study in 710 cancer and healthy subjects.

e18077 Background: Informed consent documents containing language about biospecimen storage/sharing (BSS) may be a barrier to minority participation in cancer research. We explored this issue in a nationwide URCC-NCORP observational study by assessing whether breast cancer patients and healthy control subjects, who provided consent to a cognitive function study, differed in their understanding of the ways their BSS could be used by researchers. Methods: We analyzed cross-sectional data from female breast cancer patients scheduled to receive chemotherapy at NCORPs and healthy controls. After reading a consent form related to BSS and consenting to participate in a study about cognitive function, participants’ understanding of BSS was evaluated using four items for biospecimen sharing (score 0-4); three items for relevance to care (score 0-3); nine items for biospecimen use (score 0-9); and six for research purpose (score 0-6); a higher score indicates better understanding. Linear models were used to compare the mean scores between white and non-white subjects, adjusting for education and baseline reading comprehension (WRAT). Results: 461Breast cancer patients and 249 healthy controls completed the survey. The adjusted linear models showed that white subjects scored higher than non-whites (mean scores 14.43 vs. 13.43) on the survey questions overall (p &lt; 0.05), after accounting for education and WRAT. White subjects were more likely than non-whites to correctly answer all the questions for the biospecimen use (42.1% vs. 34.4%, p &lt; 0.22), biospecimen sharing (31.3% vs. 28.1%, p &lt; 0.74), relevance to care (35.1% vs. 17.2%, p &lt; 0.01), and research purpose (4.1% vs. 1.4%, p &lt; 0.97). Conclusions: Our research suggests that informed consent comprehension related to BSS is low overall across all racial/ethnic backgrounds, but non-white subjects’ scores remained lower than whites even after adjusting for education and WRAT. Efforts should be made by researchers to make it easier for all study subjects, especially non-white subjects, to understand informed consent form and BSS.

The Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies.

Fewer than one in 20 adult patients with cancer enroll in cancer clinical trials. Although barriers to trial participation have been the subject of frequent study, the rate of trial participation has not changed substantially over time. Barriers to trial participation are structural, clinical, and attitudinal, and they differ according to demographic and socioeconomic factors. In this article, we characterize the nature of cancer clinical trial barriers, and we consider global and local strategies for reducing barriers. We also consider the specific case of adolescents with cancer and show that the low rate of trial enrollment in this age group strongly correlates with limited improvements in cancer population outcomes compared with other age groups. Our analysis suggests that a clinical trial system that enrolls patients at a higher rate produces treatment advances at a faster rate and corresponding improvements in cancer population outcomes. Viewed in this light, the issue of clinical trial enrollment is foundational, lying at the heart of the cancer clinical trial endeavor. Fewer barriers to trial participation would enable trials to be completed more quickly and would improve the generalizability of trial results. Moreover, increased accrual to trials is important for patients, because trials provide patients the opportunity to receive the newest treatments. In an era of increasing emphasis on a treatment decision-making process that incorporates the patient perspective, the opportunity for patients to choose trial participation for their care is vital.