A Community-Driven Action Plan to Eliminate Breast and Cervical Cancer Disparity: Successes and Limitations

Fouad, Mona N.; Partridge, Edward E.; Dignan, Mark; Holt, Cheryl L.; Johnson, Rhoda E.; Nagy, Christine; Parham, Groesbeck P.; Person, Sharina D.; Scarinci, Isabel C.; Wynn, Theresa A.

doi:10.1207/s15430154jce2101s_16

Cited by 18 publications

(14 citation statements)

References 6 publications

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“…Strategies that have been shown to be successful include a lay navigator program to enhance minority participation in clinical trials [12, 13], recruitment letters directed towards minorities [14], and incorporating programmatic changes to the evaluation and referral to clinical trial mechanism [15] Quite simply, it’s impossible to improve or eliminate a disparity if you fail to enroll the patients that stand the most to benefit.…”

Section: Discussionmentioning

confidence: 99%

Minority participation in Gynecologic Oncology Group (GOG) Studies

Scalici

Finan

Black

et al. 2015

Gynecologic Oncology

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Objective Participation of minority populations in clinical trials is paramount to understanding and overcoming cancer racial disparities. The goal of this project is to evaluate minority participation in published GOG clinical trials. Methods GOG publications from years 1985 to 2013 were reviewed. Minority enrollment was stratified by tumor site, type of study, and year published. Based on Centers of Disease Control and Prevention (CDC) age-adjusted incidence for race, expected and observed ratios of racial participation were calculated. Results 445 GOG publications involving 67,568 patients were reviewed. Racial breakdown was provided in 170 studies (38%) for a total of 45,259 patients: 83% White (n=37,617); 8% Black (n=3,686), and 9% Other (n= 3,956). The majority of studies were Ovarian (n=202) and Phase 2 (n=290). When evaluating the quartiles of publication year, a steady decline in proportion of Black patients enrolled was seen. Race was not reported in any publication prior to 1994. Compared to years 1994–2002, a 2.8-fold lower proportion of black enrollment was noted in years 2009–2013 (16% & 5.8%, respectively; p<0.01). Utilizing CDC age-adjusted incidence, observed enrollment of Black patients onto GOG clinical trials was significantly less than expected enrollment. Observed Black enrollment was 15-fold lower than expected for Ovarian trials, 10-fold lower for Endometrial, 4.5-fold for Cervix, and 5.2-fold for Sarcoma (each p <0.001). Conclusions Based on age-adjusted incidence, observed enrollment of Black patients is lower than expected enrollment onto GOG studies. Despite national emphasis on minority enrollment on clinical trials, fewer Black patients were enrolled over time.

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Section: Discussionmentioning

confidence: 99%

Minority participation in Gynecologic Oncology Group (GOG) Studies

Scalici

Finan

Black

et al. 2015

Gynecologic Oncology

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“…4,70 By having more ownership over the process, CBOs can further empower vulnerable populations to manage the improvement of health and quality of life in their communities, whether it be (1) reduction of environmental exposures, [71][72][73] (2) promotion of better environmental health policies, 13,74,75 (4) improved asthma diagnosis and management, [76][77][78] (5) cessation of smoking among youth, 79 or (6) reduction of health disparities. [80][81][82] We hope that environmental and public health researchers can benefit from a move away from traditional UMRMs toward the COMR approach. Local, state, and federal research funding initiatives exist that encourage researchers to contract their services to CBOs with a high level of organizational capacity.…”

Section: Discussionmentioning

confidence: 99%

The West End Revitalization Association's Community-Owned and -Managed Research Model: Development, Implementation, and Action

Heaney¹,

Wilson²,

Wilson³

2007

cpr

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T he shift to a community-based participatory (CBPR) research paradigm has been beneficial to many academic, government, and CBOs in addressing EJ and public health issues. [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18] The CBPR approach (1) acknowledges the community as a unit of identity, (2) builds on community strengths and resources, (3) facilitates a collaborative, equitable partnership involving power sharing and empowerment process, (4) fosters co-learning and capacity building, (5) focuses on a balance between knowledge production and intervention, AbstractBackground: Principal investigators (PIs) of communitybased projects are predominantly university faculty who partner with community-based organizations (CBOs) to find a place to conduct research in communities that will cooperate with their research objectives. University-managed research models (UMRMs) are not always beneficial for CBOs because the university usually manages the study, collects and owns the data, and leverages control at each stage of research, without priority to resolution of problems impacting the quality of life of participating communities.

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“…The IMPaCT project was based on the Community Health Advisors Network (CHAN) model, 35,41,42 which enables community members to serve as educators, navigators, and agents of change. The CHAN model is based on a social network theory about the health-enhancing effects of social support and community organization.…”

Section: Methodsmentioning

confidence: 99%

Patient Navigation As a Model to Increase Participation of African Americans in Cancer Clinical Trials

Fouad

Acemgil

Bae

et al. 2016

JOP

Self Cite

101

122

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Purpose Less than 10% of patients enrolled in clinical trials are minorities. The patient navigation model has been used to improve access to medical care but has not been evaluated as a tool to increase the participation of minorities in clinical trials. The Increasing Minority Participation in Clinical Trials project used patient navigators (PNs) to enhance the recruitment of African Americans for and their retention in therapeutic cancer clinical trials in a National Cancer Institute–designated comprehensive cancer center. Methods Lay individuals were hired and trained to serve as PNs for clinical trials. African American patients potentially eligible for clinical trials were identified through chart review or referrals by clinic nurses, physicians, and social workers. PNs provided two levels of services: education about clinical trials and tailored support for patients who enrolled in clinical trials. Results Between 2007 and 2014, 424 African American patients with cancer were referred to the Increasing Minority Participation in Clinical Trials project. Of those eligible for a clinical trial (N = 378), 304 (80.4%) enrolled in a trial and 272 (72%) consented to receive patient navigation support. Of those receiving patient navigation support, 74.5% completed the trial, compared with 37.5% of those not receiving patient navigation support. The difference in retention rates between the two groups was statistically significant (P < .001). Participation of African Americans in therapeutic cancer clinical trials increased from 9% to 16%. Conclusion Patient navigation for clinical trials successfully retained African Americans in therapeutic trials compared with non–patient navigation trial participation. The model holds promise as a strategy to reduce disparities in cancer clinical trial participation. Future studies should evaluate it with racial/ethnic minorities across cancer centers.

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A Community-Driven Action Plan to Eliminate Breast and Cervical Cancer Disparity: Successes and Limitations

Abstract: Community capacity building can lead to a sense of ownership and empowerment.

Cited by 18 publications

References 6 publications

Minority participation in Gynecologic Oncology Group (GOG) Studies

Minority participation in Gynecologic Oncology Group (GOG) Studies

The West End Revitalization Association's Community-Owned and -Managed Research Model: Development, Implementation, and Action

Patient Navigation As a Model to Increase Participation of African Americans in Cancer Clinical Trials

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