Participation In Cancer Research Research Articles

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 < 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 < 0.22), biospecimen sharing (31.3% vs. 28.1%, p < 0.74), relevance to care (35.1% vs. 17.2%, p < 0.01), and research purpose (4.1% vs. 1.4%, p < 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.

Abstract C03: Untangling the influence of healthcare distrust on black Americans' intention to participate in cancer prevention research

Abstract Background: Eliminating racially driven cancer inequities requires conducting research with underrepresented groups, such as Black Americans, yet research participation is not comparable with the burden of cancer in this population. Distrust of the healthcare system is often cited as a central reason for Blacks' lower cancer research participation rates. Few studies have explored whether distrust operates alone or in combination with other attitudes toward research to influence Blacks' intention to participate in cancer research. The study purpose was to explain the relationship between healthcare distrust and the intention to participate in cancer prevention research among a group of Southern Blacks. We hypothesized that healthcare distrust would be inversely related to and a significant predictor of intention to participate in cancer prevention research. Methods: A survey tool was developed based on previous qualitative research and administered between November 2014 and July 2015. Eligible respondents identified as Black American, were 18 or older, residents of South Carolina, and had never been diagnosed with cancer. Of the 208 surveys collected, 194 met eligibility criteria. Analyses were restricted to 130 participants with complete responses. Survey items assessed participant demographics, healthcare distrust, and previous research participation. Research related attitudes/beliefs collected included positive and negative beliefs about research participation, social norms around participation, and beliefs about individual and community level outcomes of research participation. Multiple regression models were created to describe the relationship between negative beliefs about cancer prevention research and intention to participate in cancer prevention research. Analyses were conducted in STATA 13. Results: The analytic sample was predominately female (88.5%), employed (73.9%), lived in urban areas (83.9%), and had a high school education or less (55.4%). A large proportion reported being likely or very likely to participate in cancer prevention research (83.4%) but only 34.6% reported previous participation in health research. Intention to participate in cancer prevention research had a slightly negative association with healthcare mistrust (r= -0.19). Healthcare mistrust was predictive of intention to participate in the base model (R2=0.04), but after the addition of control variables healthcare mistrust became an insignificant predictor. The model was strengthened with the addition of scales reflecting positive and negative attitudes, social norms, and outcomes related to cancer prevention research participation (R2=0.40). Except for participation outcomes, all research related beliefs were significant predictors of intention. Additional models were constructed to determine the demographic covariates of research related beliefs. Only the model describing social norms around cancer prevention research was significant (R2=0.17), with gender serving as a significant predictor of the model. Conclusion: Although commonly referenced as a barrier to research participation among Black Americans, healthcare distrust failed to predict intention to participate in cancer prevention research. Social norms regarding participation and positive and negative attitudes toward participation in cancer prevention research were strong predictors of intention, yet beliefs about the outcomes of research had no impact on willingness to participate. This study highlights the need to explore a wider set of attitudes and beliefs in order to determine what drives intention to participate in cancer research in this population. Equally important is the need to explore influences on research participation outside of intention given the disparity between intention and participation in the study sample. Citation Format: Deeonna E. Farr, Heather M. Brandt, Daniela B. Friedman, Cheryl A. Armstead, Sue P. Heiney, Swann A. Adams, Wanda Green, Samira Khan, James R. Hebert. Untangling the influence of healthcare distrust on black Americans' intention to participate in cancer prevention research. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr C03.

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.

Exploring research participation among cancer patients: analysis of a national survey and an in-depth interview study.

BackgroundInequalities in cancer research participation are thought to exist with certain groups under-represented in research populations; however, much of the evidence is based on small-scale studies. The aim of this study was to explore data from in-depth interviews with cancer patients and a large national survey to investigate variation in who is asked to participate in research and who takes part.MethodsFactors associated with research discussion and participation were explored in National Cancer Patient Experience Survey data using multivariate logistic regression and during in-depth interviews with 25 breast cancer patients.ResultsSurvey data were available for 66,953 cancer patients; 30.4 % reported having discussions about, and 18.9 % took part in, research. Barriers to participation at staff, patient and trust level were evident; for example, staff were less likely to discuss research with older patients, Asian and black patients were less likely to take part and patients treated at specialist or teaching trusts had higher levels of discussion and participation. Interviews showed that patients’ willingness to participate changed over time and was not synonymous with participation as some were ineligible.ConclusionSome patient groups were less likely to have discussions about or participate in research. Analysis of this variation vis-à-vis the composition of the patient population may be useful to ensure that there is equity regarding the potential benefits of research participation and that research findings are applicable to target populations in the translational model.

A participatory study of teenagers and young adults views on access and participation in cancer research

PurposeThe purpose of this study was to elicit young people's views on access and participation in cancer research. MethodsEight young people aged 18–25 years with a previous cancer diagnosis aged 15–24 participated in a one day workshop utilising participatory methodology. The workshop consisted of four exercises: role play/scene setting; focus group examining thoughts and opinions of research access and participation; individual reflection on access to different types of research; and creative interpretation of the workshop. Further consultation with 222 young people with cancer was conducted using an electronic survey. ResultsThree themes emerged:• Patient choice: Young people thought it was their right to know all options about available research. Without knowledge of all available studies they would be unable to make an informed choice about participation.• Role of healthcare professionals as facilitators/barriers: Young people suggested non-clinical healthcare professionals such as social workers and youth support coordinators may be more suited to approaching young people about participation in psychosocial and health services research.• Value of the research: The what, when and how information was delivered was key in relaying the value of the study and assisting young people in their decision to participate.Further consultation showed approximately 70% wanted to find out about all available research. However, one third trusted healthcare professionals to decide which research studies to inform them of. ConclusionEffective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation.

The effects of cancer research participation on patient experience: a mixed-methods analysis.

Patient‐reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as ‘very good/excellent’ (OR adj:1.64, 95%CI: 1.53–1.76, P < 0.001) and to describe positive patient experiences, such as better access to non‐standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research.

Cancer fear and fatalism: how African American participants construct the role of research subject in relation to clinical cancer research.

Lack of African American participation in cancer clinical trials has been identified as a critical problem. Historical interactions related to race, identity, and power may contribute to continued inequity in healthcare and research participation. The aim of this study was to explore the perceptions of African Americans regarding cancer and research and how these perceptions shape their beliefs about participating as cancer research subjects. Three African American focus groups were conducted including people who had never participated in cancer research, those who had, and those who were asked but refused (n = 16). Discussion focused on their perceptions of cancer research and actual or potential participation as research subjects. Data were coded using both structured and inductive coding methods. Fear and fatalism emerged in relation to research, race, power, and identity and were related to larger historical and social issues rather than only individual thoughts or feelings. Participants described fears of the unknown, death, mistrust, conspiracy, and discrimination together with positive/negative tensions between self, family, and community responsibilities. Complex identities linked perceptions of cancer and cancer research with broader historical and cultural issues. Fear, fatalism, and current and historical relationships influence how people perceive themselves as research subjects and may influence their decisions to participate in cancer research. Acknowledging how complex factors including race and racism contribute to health disparities may give nurses and other healthcare providers a better appreciation of how historical, social, and cultural dynamics at individual, community, and organizational levels influence access to and participation in cancer research.

Empowering Promotores de Salud as partners in cancer education and research in rural southwest Kansas.

To describe community-based participatory processes used to develop promotore training on cancer research, and to assess the feasibility of training promotores from rural communities to disseminate cancer research information. Prospective, cohort design. Rural communities in the state of Kansas. 34 Spanish-speaking promotores attended an information session; 27 enrolled and 22 completed training. With input from a community advisory board, the authors developed a leadership and cancer curriculum and trained Spanish-speaking promotores to disseminate information on cancer research. Promotores completed pretraining and post-training surveys in Spanish to assess demographic characteristics and changes in knowledge of cancer, cancer treatment and cancer research studies, and intent to participate in cancer research. Cancer knowledge, awareness of cancer clinical trials, interest in participating in cancer clinical research studies. Compared to pretraining, after training, promotores were more likely to correctly define cancer, identify biopsies, describe cancer stages, and report ever having heard of cancer research studies. Completion rates of the training and willingness to participate in cancer research were high, supporting the feasibility of training promotores to deliver community-based education to promote cancer research participation. Nursing professionals and researchers can collaborate with promotores to disseminate cancer education and research among underserved rural Latino communities in Kansas and elsewhere. Members of these communities appear willing and interested in improving their knowledge of cancer and cancer clinical trials.

Cancer Research Participation Beliefs and Behaviors of a Southern Black Population: A Quantitative Analysis of the Role of Structural Factors in Cancer Research Participation.

Increasing the participation of Blacks in cancer research is a vital component of a strategy to reduce racial inequities in cancer burden. Community-based participatory research (CBPR) is especially well-suited to advancing our knowledge of factors that influence research participation to ultimately address cancer-related health inequities. A paucity of literature focuses on the role of structural factors limiting participation in cancer research. As part of a larger CBPR project, we used survey data from a statewide cancer needs assessment of a Black faith community to examine the influence of structural factors on attitudes toward research and the contributions of both structural and attitudinal factors on whether individuals participate in research. Regression analyses and non-parametric statistics were conducted on data from 727 adult survey respondents. Structural factors, such as having health insurance coverage, experiencing discrimination during health care encounters, and locale, predicted belief in the benefits, but not the risks, of research participation. Positive attitudes toward research predicted intention to participate in cancer research. Significant differences in structural and attitudinal factors were found between cancer research participants and non-participants; however, directionality is confounded by the cross-sectional survey design and causality cannot be determined. This study points to complex interplay of structural and attitudinal factors on research participation as well as need for additional quantitative examinations of the various types of factors that influence research participation in Black communities.

African American men's and women's perceptions of clinical trials research: focusing on prostate cancer among a high-risk population in the South.

While African Americans are at a significantly higher risk for developing certain cancers, they also have low rates of participation in cancer research, particularly clinical trials. This study assessed both African American men's and African American women's (1) knowledge of and participation in cancer-related clinical research and (2) barriers to and motivations for participating in clinical research. Data were collected from a total of 81 participants. Phase I of this research consisted of qualitative focus groups (all 81 participants). Phase II included quantitative pre/post survey data from an education program (56 participants). Findings from the study revealed that African American men and women had poor knowledge about clinical trials and the informed consent process, limited experience in participating in clinical trials, and they feared and mistrusted cancer research. Participants identified incentives, assurance of safety, knowledge and awareness, and benefiting others as motivators to participate in clinical trials research.

Abstract A30: Informed consent for cancer biobank research: Case series of patients with cancer disparities in rural Maine.

Abstract One critical issue in cancer research biobanking is improving representation of America's minority and medically underserved populations. Rural populations often suffer disparities related to poverty and healthcare access, limiting their participation in cancer research. We report a case series of newly diagnosed cancer patients at Eastern Maine Medical Center (EMMC), a rural comprehensive medical center. Of 85 eligible cases, 83 (98%) consented to participate in biobanking research; 2 years later, survivors (87%) consented to 2 additional requests. We used NCI/ISBER Best Practices to create biobank infrastructure after approval by EMMC IRB and OHP HRPO. Informed consent forms were at Flesch-Kincaid 8th Grade reading level, and supplemented by NCI educational brochures. Cases lived 50-150 miles from EMMC. Of 108 candidates, 83 eligible cases (49 lung cancer; 21 breast cancer; 13 other cancers) consented to questionnaires and donation of blood and/or tissue. Of the remaining 23 cases, 2 declined; cancer was not confirmed in 12; 4 died, and 7 were ineligible. Within 2 years, 14 cases died. Of those alive, 60/69 (87%) were re-contacted and consented to additional data collection, and transfer of biospecimens to NCI's biorepository. Most cases exhibited co-morbidities with 1-3 chronic diseases (mostly cardiovascular), prior cancer history and long-term tobacco and/or alcohol consumption. Nearly 90% reported 1+ relative with cancer, while 69%, reported 1+ prior cancers. Anecdotally, willingness to consent was based on altruistic hopes that research would generate knowledge to reduce cancer incidence. In summary, cancer patients from disadvantaged rural communities will consent to participate in biobank research. Citation Format: Janet M. Hock, Deborah G. Morrison, Christopher C. Farah. Informed consent for cancer biobank research: Case series of patients with cancer disparities in rural Maine. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr A30.

Developing Partnerships and Recruiting Dyads for a Prostate Cancer Informed Decision Making Program: Lessons Learned From a Community-Academic-Clinical Team

Prostate cancer (PrCA) is the most commonly diagnosed non-skin cancer among men. PrCA mortality in African-American (AA) men in South Carolina is ~50% higher than for AAs in the U.S as a whole. AA men also have low rates of participation in cancer research. This paper describes partnership development and recruitment efforts of a Community-Academic-Clinical research team for a PrCA education intervention with AA men and women that was designed to address the discordance between high rates of PrCA mortality and limited participation in cancer research. Guided by Vesey's framework on recruitment and retention of minority groups in research, recruitment strategies were selected and implemented following multiple brainstorming sessions with partners having established community relationships. Based on findings from these sessions culturally appropriate strategies are recommended for recruiting AA men and women for PrCA education research. Community-based research recruitment challenges and lessons learned are presented.

Increasing minority patient participation in cancer clinical trials using oncology nurse navigation

BackgroundResidential distance from an academic or cancer center is a significant barrier to minority patient participation in cancer research. Most cancer clinical trials (CTs) are only accessible at academic and cancer centers, yet most cancer patients receive treatment in their home communities where access to CTs may be limited. Oncology nurse navigation is an innovative approach for increasing minority CT participation by facilitating access to cancer CTs in communities where minority patients live. The purpose of this study was to evaluate the impact of oncology nurse navigation on community-based recruitment of black patients to breast cancer CTs at a major cancer center. MethodsWe merged the roles of a traditional oncology research nurse and a professional patient navigator to create a novel health care provider role, the oncology nurse navigator. The primary duties of the oncology nurse navigator were to engage black cancer patients in the offices of their community physicians and to collaborate with community physicians to increase black patient participation in cancer research. The oncology nurse navigator played a key role in all phases of the CT participation process (e.g., screening for eligibility and completion of informed consent and clinical research forms) and guided each patient around barriers in the health care system. The accrual of eligible patients to breast cancer CTs was used to assess the impact of oncology nurse navigation on community-based recruitment of blacks to cancer CTs. ResultsBetween January 2007 and December 2008, a total of 132 black breast cancer patients were screened by a single oncology nurse navigator for eligibility to University of Southern California–sponsored breast cancer CTs. Fifty-nine patients were eligible for CTs, and each was invited to participate in 1 or more CTs for which they were eligible. Fifty-one of 59 eligible black patients (86% of eligible patients) were enrolled to 1 or more research protocols. The estimated cost per enrolled patient was $5,677, nearly half the expected per patient cost of treating patients on CT at an academic or cancer center. ConclusionsOncology nurse navigation is an effective outreach strategy for increasing black patient participation in cancer research and may be achieved at nearly half the cost of traditional methods of enrolling patients in CTs at cancer centers.

Erasing Barriers to Minority Participation in Cancer Research

Erasing Barriers to Minority Participation in Cancer Research

Abstract B25: Feelings associated with research participation influence willingness to take part in epidemiological studies

Abstract Purpose: Cancer epidemiology research often involves members of the public as “healthy controls.” Encouraging broad participation in cancer research is a key concern, particularly for research involving members of the general public who may have lower motivation to take part. Most work of individuals' decisions about study participation has focused on expected utility constructs, examining the benefits participants see to participating and the barriers that make participation less likely. Little attention has been paid to emotional decision-making processes in this context. Such emotional processes (e.g., fear about procedures, anger about historical research misconduct) may guide decisions about participation. The purpose of this study was to examine the relation of cognitive and affective decision-making factors to individuals' participation in a epidemiologic study involving both questionnaire completion and blood collection. Method: Participants (N=46) were community adults in Niagara Falls, NY who were taking part in an educational program about cancer-related research participation. Both prior to and following the educational program, we assessed participants' beliefs about the expected utility of participating in studies that involve questionnaire completion and studies that involve blood collection, the positive and negative feelings they associated with taking part in each type of study, and their willingness to take part in each type of study. Following the post-program questionnaire, participants were offered the opportunity to take part in an epidemiological study in which they could complete a questionnaire, provide a blood sample, or do both. Results: Both willingness to participate in studies and actual participation was primarily predicted by the feelings individuals associated with research, for both blood draw studies and questionnaire studies, those with more negative feelings about participation were less like to report willingness to take part in the study; questionnaire willingness B=−1.21, p&amp;lt;.05; blood willingness B=−0.97, p&amp;lt;.05. For blood draw studies, affective associations also predicted actual participation; B=−1.15, p&amp;lt;.05. Discussion: The feelings individuals have about research participation played a central role in determining participation. Both research to better understand determinants of research participation and interventions to increase participation should consider affective factors. Citation Information: Cancer Prev Res 2010;3(1 Suppl):B25.

Latina recruitment for cancer prevention education via Community Based Participatory Research strategies

Increasing minority participation in cancer research is an ethical and statistical necessity for gaining population-specific knowledge of cancer prevention, screening, and treatment. Locating and recruiting eligible and willing minority participants presents unique structural and cultural/linguistic challenges. Community Based Participatory Research provides a viable set of principles for facilitating recruitment in hard-to-recruit communities. We focus on the specific challenge of recruiting and engaging low-income and underinsured Latina women in cancer prevention education research, and present community-based strategies used to recruit women into a recently completed study in Arizona, Juntos en la Salud (Together in Health). Community representatives and promotoras' (Latino community health educators) involvement in site identification, individual recruitment, and development of strategies and materials for the interventions built engagement and trust. These strategies resulted in enrollment of an especially low-income, underinsured population. To emphasize the degree to which a particularly underserved population was recruited, we present data comparing demographic and screening profiles of enrollees to the general population of Latinos in Arizona.

Battling the Hematological Malignancies: The 200 Years' War

The delineation of the hematological malignancies began near the end of the first third of the 19th century with the recognition of the similarity among cases with lymph node tumors and an enlarged spleen (Hodgkin's disease). Descriptions of chronic and acute leukemia and myeloma followed thereafter. In the first years of the 20th century the discovery of x-radiation permitted palliative orthovoltage radiation therapy of Hodgkin's disease. Following World War II, legitimate drug therapy for the hematological malignancies was introduced: nitrogen mustard, adrenocorticotropic hormone and cortisone acetate, and anti-folic acid derivatives, initially aminopterin. Today, about 14 classes of drugs (different mechanisms of action) and >50 individual agents are being used, with others under study. Several examples of agents targeting specific transcription factors or oncoproteins have been introduced. Despite remarkable progress, including the ability to cure acute leukemia in about 70% of children, cure several genetic variants of acute myelogenous leukemia in younger adults, cure some cases of lymphoma in children and younger adults, and induce prolonged remission in many affected persons, the majority of patients face an uncertain outcome and shortened life. Thus, we have much to do in the next several decades. The significant hurdles we must overcome include: the apparent infrequency of an exogenous cause that can be avoided, the exponential increase in incidence rates with age and the dramatic negative effect of aging on the results of treatment, the challenge of one trillion or more disseminated cancer cells among which are a smaller population of cancer stem cells, the profound genetic diversity of the hematological malignancies (apparently hundreds of unique genetic primary lesions), the redundant growth and survival pathways defining the cancer phenotype, the decreasing market for pharmaceutical companies as therapy becomes more specific (fewer target patients) and drug development costs become more expensive, and the significant negative long-term effects of current therapy on both children and adults. These challenges will be gradually overcome, if we (a) develop new models of cooperation among academia, industry, and government, (b) continue the growth of international participation in cancer research (more keen minds to the task), and (c) convince the governments of the world, including that of the U.S., that an investment in minimizing the effects of cancer is as important as defending against other threats to the welfare and longevity of their citizens.

Successful Strategies for Increasing African American Participation in Cancer Genetic Studies: Hopeful Signs for Equalizing the Benefits of Genetic Medicine

Objective: To determine whether prior success in recruiting African Americans to an in-house cancer genetics registry could be duplicated when recruiting to a national registry requiring a significantly increased level of commitment. Additionally, to determine which recruitment sources and practices yielded the highest number of African American participants. Methods: A retrospective analysis of recruitment sources, practices, and results for recruitment to the Cancer Genetics Network (CGN; a national research registry), from 2000 to 2005 was conducted. These results were compared to previous experience in recruiting African Americans to the Family Cancer Registry (FCR; an in-house registry) during the period 1992–2005. Results: In the 1st year of recruitment to the CGN, African Americans accounted for 24% of those consenting to participate in the CGN registry from our center. This compares to an average annual rate of 27% for the FCR during the years 1998–2005, and a rate of less than 1% from 1992 to 1998. By 2005, African Americans accounted for 27% of CGN participants recruited through the University of Texas Southwestern Medical Center, one of eighteen participating institutions in the CGN. Hospital-based resources such as cancer treatment clinics and tumor registries yielded the highest percentage of African American participants (66.5%), and self-referral yielded the lowest (0%). Seventy-seven percent of African Americans were actively sought out and recruited from treatment clinics, whereas the vast majority of Caucasian participants were recruited passively during the course of genetic counseling sessions that were scheduled for reasons unrelated to participation in cancer research. There were no known instances of African Americans contacting CGN staff after reading printed recruitment materials or internet advertisements. Conclusions: The increased level of commitment required of CGN participants did not deter African Americans from participating in cancer genetics research. Recruitment strategies responsible for dramatically increasing recruitment rates to the FCR from 1998 to 2000 were equally effective when used for recruitment to the CGN. The most effective recruitment sources were high-yield venues such as cancer treatment clinics and tumor registries, and active recruitment methods yielded the highest number of African American participants. Advertising through internet announcements and printed recruitment materials did not appear to be effective.

Initiatives to improve minority participation in cancer clinical trials

1029 Background: Barriers to minority research participation fall into two categories with respect to research institutions: 1) Community-based factors: historical events, attitudes towards the medical system, trust in research, and referral patterns and geographic distribution of providers serving minority patients. 2) Institutional factors: system and policy issues that define where patients receive care, researcher and staff attitudes and practices, and infrastructure availability to support minority accrual. Much attention has focused on community factors but with little evidence to support specific interventions. Recent studies suggest that internal barriers may play an even more significant role. The Siteman Cancer Center’s Program for the Elimination of Cancer Disparities (PECaD) uses several internal strategies as part of its comprehensive program. Methods: First, the Siteman Cancer has raised substantial funds and changed institutional policies to improve access to cancer services for minority populations, particularly from the African-American community. Second, PECaD implemented a trial monitoring program requiring cancer investigators to set and achieve appropriate accrual based on the patient population treated in each disease area. Third, through trial monitoring and consultation with investigators, PECaD is developing core resources to help recruit and retain minority participants. Results: This approach has led to marked improvement in representative participation in cancer research. In all categories of breast research, African-American participation has climbed from 9% to 28% over five years. In nearly all disease areas, African American participation in therapeutic trials has increased steadily and in some cases exceeds the proportion of African-American patients treated in that disease area. Conclusions: Eliminating cancer disparities requires representative research participation. To achieve this goal, research institutions need to critically examine and implement changes in systems, practices and culture. Leadership, institutional commitment, and operational restructuring can result in significant change even with relatively modest financial investment. No significant financial relationships to disclose.