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2.
Front Public Health ; 11: 1251912, 2023.
Article in English | MEDLINE | ID: mdl-37905239

ABSTRACT

Public health organizations, including the Academy of Nutrition and Dietetics and the American Hospital Association, recognize the importance of achieving food and nutrition security to improve health outcomes, reduce healthcare costs, and advance health equity. In response, federal, state, and private agencies are increasingly seeking to fund healthcare-based interventions to address food insecurity among patients. Simultaneously, nutrition-based interventions targeting chronic diseases have grown across the United States as part of the broader "Food is Medicine" movement. Few studies have examined the successes, challenges, and limitations of such efforts. As Food is Medicine programs continue to expand, identifying common approaches, metrics, and outcomes will be imperative for ensuring program success, replicability, and sustainability. Beginning in 2020, the Food as Medicine (FAM) program, a multipronged, collaborative intervention at Grady Health System has sought to combat food insecurity and improve patient health by leveraging community resources, expertise, and existing partnerships. Using this program as a case study, we (1) outline the collaborative development of the FAM program; (2) describe and characterize patient engagement in the initial 2 years; and (3) summarize strengths and lessons learned for future hospital-based food and nutrition programming. As this case study illustrates, the Food as Medicine program provides a novel model for building health equity through food within healthcare organizations.


Subject(s)
Dietetics , Safety-net Providers , Humans , United States , Nutritional Status
3.
Ethics Hum Res ; 45(4): 30-34, 2023.
Article in English | MEDLINE | ID: mdl-37368519

ABSTRACT

Although racial and ethnic categories are social constructs without inherent biologic or genetic meaning, race and ethnicity impact health outcomes through racism. The use of racial categories in biomedical research often misattributes the cause of health inequities to genetic and inherent biological differences rather than to racism. Improving research practices around race and ethnicity is an urgent priority and requires education as well as structural change. We describe an evidence-based intervention for an institutional review board (IRB). Our IRB now requires all biomedical study protocols to define racial and ethnic classifications they plan to use, to state whether they are describing or explaining differences between groups, and to provide justification for any use of racial or ethnic group variables as covariates. This antiracist IRB intervention is an example of how research institutions can help ensure the scientific validity of studies and avoid the unscientific reification of race and ethnicity as inherently biological or genetic concepts.


Subject(s)
Biomedical Research , Racism , Humans , Ethics Committees, Research , Universities , Ethnicity
4.
J Hosp Med ; 18(3): 234-238, 2023 03.
Article in English | MEDLINE | ID: mdl-36598085

ABSTRACT

Women and persons from racial and ethnic populations underrepresented in medicine (URiM) comprise a substantially lower proportion of academic internal medicine faculty, particularly at senior ranks (associate professors and professors). Numerous factors lead to this inequity which has broad implications for medical education and healthcare. The Emory University Division of General Internal Medicine Grady Section (GIMG) formed the Faculty Review Committee (FRC) in 2013 to address low promotion rates to senior ranks as part of a strategy to foster a more inclusive, equitable environment. The FRC systematically and proactively reviews all GIMG faculty years prior to possible promotion to provide tailored recommendations to bolster professional development and with a goal to expedite successful advancement to senior ranks. Deidentified GIMG academic rank data was compared with aggregate data from Emory University School of Medicine and the American Association of Medical Colleges. In 2020, GIMG had significantly more senior faculty compared with pre-FRC intervention (odds ratio [OR]: 3.94, 95% confidence interval [CI]: 1.65-9.42). Subgroup analyses of non-URiM women GIMG senior faculty compared with preintervention (OR: 11.6, 95% CI: 2.52-53.7), showed a significant increase. A trend toward increased URiM women faculty was also seen. Descriptive analysis suggests that the GIMG group had a higher promotion to senior ranks among women and URiM compared with national and institutional comparators. The FRC is associated with significant increases in the promotion of all faculty and non-URiM women faculty, and an increasing trend of URiM women faculty, effects which help contribute to an equitable academic medicine environment, fostering a more diverse workforce and improved patient outcomes.


Subject(s)
Career Mobility , Medicine , Humans , Female , United States , Ethnicity , Faculty, Medical , Racial Groups
5.
Am Surg ; 89(11): 4521-4530, 2023 Nov.
Article in English | MEDLINE | ID: mdl-35981540

ABSTRACT

OBJECTIVE: The objective of this study was to investigate if race is associated with the likelihood of operative management of acute fractures. METHODS: A systematic review of the literature was performed using the PubMed, EMBASE, and Cochrane databases to identify studies associated with social disparities and acute orthopedic trauma. Peer-reviewed studies commenting on social disparities and the decision to pursue operative or non-operative management of acute fractures were identified for detailed review. Study characteristics and odds ratios were extracted from each article. The Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines were followed. A quality analysis of the data was also performed. RESULTS: In total, 13 studies were identified and 8 were included in the meta-analysis totaling 743,846 fractures. Hip, distal radius, pelvic, tibial plateau, clavicle, femoral neck, and femoral shaft fractures were represented in this patient population. The meta-analysis demonstrated that White race is associated with a higher likelihood of operative intervention compared to all other races pooled together (odds ratio, 1.31; 95% confidence interval 1.16 to 1.47; p < .0001) as well as Black race (odds ratio 1.39; 95% confidence interval 1.12 to 1.72; p = .0025). CONCLUSIONS: Non-White race and Black race are associated with a lower likelihood of receiving surgical management of acute orthopedic trauma. Surgeons and health systems should be aware of these inequities and consider strategies to mitigate bias and ensure all patients receive appropriate and timely care regardless of race.


Subject(s)
Fracture Fixation , Fractures, Bone , Healthcare Disparities , Humans , Black People/statistics & numerical data , Femoral Fractures , Fracture Fixation/economics , Fracture Fixation/methods , Fracture Fixation/statistics & numerical data , Odds Ratio , White People/statistics & numerical data , Healthcare Disparities/ethnology , Healthcare Disparities/statistics & numerical data , Fractures, Bone/economics , Fractures, Bone/epidemiology , Fractures, Bone/ethnology , Fractures, Bone/surgery
6.
J Nutr Educ Behav ; 53(9): 770-778, 2021 09.
Article in English | MEDLINE | ID: mdl-34509277

ABSTRACT

OBJECTIVE: Evaluate improvements in food security and health outcomes associated with participation in a produce prescription program. DESIGN: Program evaluation with repeated measures over 6 months. SETTING: Six sites across Georgia. PARTICIPANTS: Of the 159 enrolled through primary care sites, 122 participants were considered graduates (attended at least 3 of the 6 monthly visits). The majority of program graduates were Black (78.7%), earned <$25,000 annually (76.6%), and were food insecure (74.2%). INTERVENTION: Six-month program offering group-based nutrition and cooking education along with subsidies for fresh produce worth $1 per family member per day, redeemable weekly. MAIN OUTCOME MEASURES: Food security, blood pressure, body mass index, waist circumference, and glycated hemoglobin. ANALYSIS: Linear mixed models estimating association of change in outcomes with program visits 1-6. Fixed effects included participant sex and age, whereas random effects included random intercepts and slopes for the site of program participation and participants. RESULTS: Participation in a produce prescription program combining subsidies for produce and nutrition education decreased food insecurity (P < 0.001) and diastolic blood pressure significantly (P = 0.019). CONCLUSIONS AND IMPLICATIONS: These findings highlight the promise of this program and similar programs for improving patient food security and health outcomes among the most vulnerable, underserved communities while aiding in setting realistic expectations and suggestions for program implementation.


Subject(s)
Fruit , Vegetables , Food Security , Food Supply , Georgia , Humans , Prescriptions
7.
J Natl Med Assoc ; 113(4): 440-448, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33838908

ABSTRACT

OBJECTIVE: To determine whether the homeless population experiences disparities in care and communication during inpatient hospitalizations in a safety-net hospital. METHODS: We administered a modified Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey to 112 age-sex- and education matched homeless and non-homeless adults at a university-affiliated-safety-net hospital from December 2017 through March 2018 and performed a retrospective review of medical records. Linear regression models were used to assess differences in responses to survey subscales, length of stay and other measures. RESULTS: Homeless participants trended toward poorer ratings for all HCAHPS subscales, reaching significance for the Communication about Medications subscale, with a mean score 1.2 (95% CI 0.48-1.76) points lower compared to non-homeless sample. Length of stay was not significantly different between homeless and non-homeless participants. CONCLUSION: In an urban safety-net hospital, disparities in communications regarding medications between hospital staff and patients were found based on housing status.


Subject(s)
Inpatients , Safety-net Providers , Adult , Communication , Humans , Patient Satisfaction , Retrospective Studies
8.
BMJ Nutr Prev Health ; 3(2): 383-386, 2020 Dec.
Article in English | MEDLINE | ID: mdl-33521548

ABSTRACT

BACKGROUND: Some American households experience food insecurity, where access to adequate food is limited by lack of money and other resources. As such, we implemented a free 6-month Fruit and Vegetable Prescription Program within a large urban safety-net hospital. METHODS: 32 participants completed a baseline and postintervention qualitative evaluation about food-related behaviour 6 months after study completion. Deductive codes were developed based on the key topics addressed in the interviews; inductive codes were identified from analytically reading the transcripts. Transcripts were coded in MAXQDA V.12 (Release 12.3.2). RESULTS: The information collected in the qualitative interviews highlights the many factors that affect dietary habits, including the environmental and individual influences that play a role in food choices people make. Participants expressed very positive sentiments overall about their programme participation. CONCLUSIONS: A multifaceted intervention that targets individual behaviour change, enhances nutritional knowledge and skills, and reduces socioeconomic barriers to accessing fresh produce may enhance participant knowledge and self-efficacy around healthy eating. However, socioeconomic factors remain as continual barriers to sustaining healthy eating over the long term. Ongoing efforts that address social determinants of health may be necessary to promote sustainability of behaviour change.

9.
Am J Med Qual ; 35(4): 315-322, 2020.
Article in English | MEDLINE | ID: mdl-31701768

ABSTRACT

Screening for depression is paramount to identify patients with depression and link them to care, yet only 29% of patients in the primary care center (PCC) were screened for depression in 2016. A baseline survey identified provider barriers to depression screening, including lack of time, support staff, and referral resources. The purpose of this project was to increase depression screening in the PCC using the Patient Health Questionnaire (PHQ-2/9). The authors created an educational program for staff and providers that included referral resources, treatment guidelines, and a decision-support tool in the electronic medical record. A retrospective chart review was performed, from January 2016 to June 2017, to determine the percentage of patients who received annual depression screening. During the program, the PCC saw an increase in depression screening rates. Thus, it is possible to overcome barriers to depression screening in a primary care setting by providing resources and education to clinicians.


Subject(s)
Depression/diagnosis , Mass Screening/organization & administration , Primary Health Care/organization & administration , Urban Population , Vulnerable Populations , Academic Medical Centers , Black or African American , Attitude of Health Personnel , Chronic Disease , Comorbidity , Health Literacy , Humans , Referral and Consultation , Retrospective Studies
10.
MedEdPORTAL ; 13: 10647, 2017 10 26.
Article in English | MEDLINE | ID: mdl-30800848

ABSTRACT

Introduction: Half of the U.S. population has chronic illness. Many disparities exist in health care for management of chronic disease among poorer individuals, including decreased access to healthy foods, homelessness, and difficulty navigating large hospital systems due to low health literacy. A survey of resident physicians found significant gaps in preparedness to provide cross-cultural care. Education is needed to promote consideration of patients' social and cultural barriers in managing disease and navigating the health care system. This module was created as an introduction to social determinants of health, and highlights disparities in access to healthy food, water, shelter, and medical care in a sample of the residents' own continuity clinic patient panel. Methods: We designed this experiential module to help internal medicine residents at an urban institution better understand how social constructs might hinder patient health. Activities were chosen by learners from a list of options, and carried out in small groups during a half day of protected time. We used reflective writing exercises to elicit resident thoughts about the module. Results: Thirty-nine second-year residents participated in the module. Following the course, 41% of residents submitted reflective statements about their experience. Reflective responses suggest an enhanced appreciation for social determinants of health, a sense of empowerment to advocate for better patient resources, and an appreciation for systems-level factors that play a role in social determinants of health. Discussion: Our results demonstrate that a short, experience-based module can impact resident attitudes about social determinants and improve advocacy around identifying community resources.


Subject(s)
Social Determinants of Health/trends , Students, Medical/psychology , Attitude of Health Personnel , Education, Medical, Graduate/methods , Humans , Internship and Residency/methods , Perception , Safety-net Providers/organization & administration , Safety-net Providers/statistics & numerical data , Students, Medical/statistics & numerical data
11.
Acad Med ; 88(9): 1215-9, 2013 Sep.
Article in English | MEDLINE | ID: mdl-23887006

ABSTRACT

Soaring costs of health care, patients living longer with chronic illnesses, and continued attrition of interest in primary care contribute to the urgency of developing an improved model of health care delivery. Out of this need, the concept of the team-based, patient-centered medical home (PCMH) has developed. Amidst implementation in academic settings, clinical teachers face complex challenges not previously encountered: teaching while simultaneously learning about the PCMH model, redesigning clinical delivery systems while simultaneously delivering care within them, and working more closely in expanded interprofessional teams.To address these challenges, the authors reviewed three existing faculty development models and recommended four important adaptations for preparing clinical teachers for their roles as system change agents and facilitators of learning in these new settings. First, many faculty find themselves in the awkward position of teaching concepts they have yet to master themselves. Professional development programs must recognize that, at least initially, health professions learners and faculty will be learning system redesign content and skills together while practicing in the evolving workplace. Second, all care delivery team members influence learning in the workplace. Thus, the definition of faculty must expand to include nurses, pharmacists, social workers, medical assistants, patients, and others. These team members will need to accept their roles as educators. Third, learning to deliver health care in teams will require support of both interprofessional collaboration and intraprofessional identity development. Fourth, learning to manage change and uncertainty should be part of the core content of any faculty development program within the PCMH.


Subject(s)
Education, Medical/organization & administration , Faculty, Medical/organization & administration , Patient-Centered Care/organization & administration , Staff Development/methods , Cooperative Behavior , Humans , Interprofessional Relations , Models, Educational , Program Development , United States
12.
Acad Med ; 87(6): 694-700, 2012 Jun.
Article in English | MEDLINE | ID: mdl-22534593

ABSTRACT

PURPOSE: To characterize national physician organizations' efforts to reduce health disparities and identify organizational characteristics associated with such efforts. METHOD: This cross-sectional study was conducted between September 2009 and June 2010. The authors used two-sample t tests and chi-square tests to compare the proportion of organizations with disparity-reducing activities between different organizational types (e.g., primary care versus subspecialty organizations, small [<1,000 members] versus large [>5,000 members]). Inclusion criteria required physician organizations to be (1) focused on physicians, (2) national in scope, and (3) membership based. RESULTS: The number of activities per organization ranged from 0 to 22. Approximately half (53%) of organizations had 0 or 1 disparity-reducing activities. Organizational characteristics associated with having at least 1 disparity-reducing effort included membership size (88% of large groups versus 58% of small groups had at least 1 activity; P = .004) and the presence of a health disparities committee (95% versus 59%; P < .001). Primary care (versus subspecialty) organizations and racial/ethnic minority physician organizations were more likely to have disparity-reducing efforts, although findings were not statistically significant. Common themes addressed by activities were health care access, health care disparities, workforce diversity, and language barriers. Common strategies included education of physicians/trainees and patients/general public, position statements, and advocacy. CONCLUSIONS: Despite the national priority to eliminate health disparities, more than half of national physician organizations are doing little to address this problem. Primary care and minority physician organizations, and those with disparities committees, may provide leadership to extend the scope of disparity-reduction efforts.


Subject(s)
Health Status Disparities , Healthcare Disparities/ethnology , Societies, Medical/organization & administration , Communication Barriers , Cross-Sectional Studies , Cultural Competency , Education, Medical , Ethnicity , Health Care Surveys , Health Education/statistics & numerical data , Health Promotion/statistics & numerical data , Health Services Accessibility , Humans , Minority Groups , Patient Advocacy/statistics & numerical data , Racial Groups , United States
13.
J Gen Intern Med ; 25 Suppl 4: S627-33, 2010 Sep.
Article in English | MEDLINE | ID: mdl-20737239

ABSTRACT

BACKGROUND: Clinical guidelines recommend that physicians counsel patients on diet and exercise; however, physician counseling remains suboptimal. OBJECTIVES: To determine if incorporating performance improvement (PI) methodologies into a needs assessment for an internal medicine (IM) residency curriculum on nutrition and exercise counseling was feasible and enhanced our understanding of the curricular needs. DESIGN AND PARTICIPANTS: One hundred and fifty-eight IM residents completed a questionnaire to assess their knowledge, attitudes, and practices (KAP) about nutrition and exercise counseling for hypertensive patients. Residents' baseline nutrition and exercise counseling rates were also obtained using chart abstraction. Fishbone diagrams were created by the residents to delineate perceived barriers to diet and exercise counseling. MAIN MEASURES: The KAP questionnaire was analyzed using descriptive statistics. Chart abstraction data was plotted on run charts and average counseling rates were calculated. Pareto charts were developed from the fishbone diagrams depicting the number of times each barrier was reported. KEY RESULTS: Almost 90% of the residents reported counseling their hypertensive patients about diet and exercise more than 20% of the time on the KAP questionnaire. In contrast, chart abstraction revealed average counseling rates of 3% and 4% for nutrition and exercise, respectively. The KAP questionnaire exposed a clinical knowledge deficit, lack of familiarity with the national guidelines, and low self-efficacy. In contrast, the fishbone analysis highlighted patient apathy, patient co-morbidities, and time pressure as the major perceived barriers. CONCLUSIONS: We found that incorporating PI methods into a needs assessment for an IM residency curriculum on nutrition and exercise counseling for patients at risk of cardiovascular disease was feasible, provided additional information not obtained through other means, and provided the opportunity to pilot the use of PI techniques as an educational strategy and means of measuring outcomes. Our findings suggest that utilization of PI principles provides a useful framework for developing and implementing a medical education curriculum and measuring its effectiveness.


Subject(s)
Curriculum , Exercise , Internal Medicine/education , Needs Assessment , Nutritional Status , Quality Improvement , Clinical Competence , Diet , Directive Counseling , Education, Medical, Graduate/methods , Feasibility Studies , Health Knowledge, Attitudes, Practice , Humans , Motor Activity , Nutrition Assessment , Surveys and Questionnaires
15.
J Gen Intern Med ; 25 Suppl 2: S102-7, 2010 May.
Article in English | MEDLINE | ID: mdl-20352502

ABSTRACT

BACKGROUND: Educating medical students about health disparities may be one step in diminishing the disparities in health among different populations. According to adult learning theory, learners' opinions are vital to the development of future curricula. DESIGN: Qualitative research using focus group methodology. OBJECTIVES: Our objectives were to explore the content that learners value in a health disparities curriculum and how they would want such a curriculum to be taught. PARTICIPANTS: Study participants were first year medical students with an interest in health disparities (n = 17). APPROACH: Semi-structured interviews consisting of 12 predetermined questions, with follow-up and clarifying questions arising from the discussion. Using grounded theory, codes were initially developed by the team of investigators, applied, and validated through an iterative process. MAIN RESULTS: The students perceived negative attitudes towards health disparities education as a potential barrier towards the development of a health disparities curriculum and proposed possible solutions. These solutions centered around the learning environment and skill building to combat health disparities. CONCLUSIONS: While many of the students' opinions were corroborated in the literature, the most striking differences were their opinions on how to develop good attitudes among the student body. Given the impact of the provider on health disparities, how to develop such attitudes is an important area for further research.


Subject(s)
Attitude of Health Personnel/ethnology , Education, Medical/methods , Focus Groups , Healthcare Disparities , Students, Medical/psychology , Adult , Female , Focus Groups/methods , Humans , Male , Young Adult
16.
J Gen Intern Med ; 25 Suppl 2: S160-3, 2010 May.
Article in English | MEDLINE | ID: mdl-20352512

ABSTRACT

INTRODUCTION: A health disparities curriculum that uses evidence-based knowledge rooted in pedagogic theory is needed to educate health care providers to meet the needs of an increasingly diverse U.S. population. DESCRIPTION: The Health Disparities Education: Beyond Cultural Competency Precourse, along with its accompanying Train the Trainer Guide: Health Disparities Education (2008), developed by the Society of General Internal Medicine (SGIM) Disparities Task Force (DTF), is a comprehensive tool to facilitate developing, implementing and evaluating health disparities education. The curriculum includes five modules highlighting several fundamental concepts in health disparities, suggestions for teaching about health disparities in a wide range of settings and strategies for curriculum evaluation. The modules are Disparities Foundations, Teaching Disparities in the Clinical Setting, Disparities Beyond the Clinical Setting, Teaching about Disparities Through Community Involvement, and Curriculum Evaluation. EVALUATION: All five modules were delivered as a precourse at the 31st Annual SGIM Annual Meeting in Pittsburgh, PA and received the "Best Precourse Award". This award is given to the most highly rated precourse based on participant evaluations. The modules have also been adapted into a web-based guide that has been downloaded at least 59 times. CONCLUSION: Ultimately, the modules are designed to develop a professional commitment to eliminating racial and ethnic disparities in health care quality, promote an understanding of the role of health care providers in reducing health care disparities through comprehensive education and training, and provide a framework with which providers can address the causes of disparities in various educational settings.


Subject(s)
Cultural Competency/education , Education, Medical/methods , Healthcare Disparities , Internal Medicine/education , Humans
17.
Genet Med ; 12(2): 116-21, 2010 Feb.
Article in English | MEDLINE | ID: mdl-20098329

ABSTRACT

BACKGROUND: Public willingness to donate tissue samples is critical to genetic research. Prior work has linked minority status and mistrust with less willingness to provide specimens. Some have suggested recruitment of prior research participants to address these barriers. We present data from a genetic epidemiology study with a request for blood and/or saliva specimens to (1) measure willingness to donate tissue/blood samples, (2) identify demographic, trust, and other factors associated with willingness to donate samples, and (3) measure willingness to participate in future genetic research. METHODS: We surveyed participants in the North Carolina Colorectal Cancer Study, which included biologic sample collection from consenting participants. Participants were later asked about sample provision; trust in researchers, and future research participation. RESULTS: African Americans were less likely to give a blood sample, when compared with whites (21% vs. 13%, P < 0.05). After controlling for "trust," this difference was no longer statistically significant (17% vs. 13%, P = 0.27). Those who had given samples were more likely to express willingness to participate in future research. CONCLUSION: Despite prior participation in a genetic epidemiology study, factors associated with provision of tissue samples reflected many previously identified demographic factors (race and trust). Interventions to improve and demonstrate the trustworthiness of the research team and recruitment of subjects with a record of sample donation might enhance future study participation.


Subject(s)
Black People/psychology , Blood Donors , Genetic Research , Tissue and Organ Procurement , Trust , White People/psychology , Female , Humans , Male , Middle Aged
18.
J Natl Med Assoc ; 101(12): 1241-6, 2009 Dec.
Article in English | MEDLINE | ID: mdl-20070012

ABSTRACT

BACKGROUND: Formal training in cultural competence for health care providers has become vital as the US population continues to become increasingly culturally diverse. However, a low percentage of medical schools offer formal training in this area, and there is a lack of curriculum evaluation reported in the literature. PURPOSE: To determine the impact of formal cultural competence teaching on third-year medical students' knowledge of cultural competence. METHOD: Data from 109 third-year medical students during the period of November 2001 to February 2004 were analyzed in the study. The intervention was a comprehensive cultural competence curriculum, and the primary outcome measure was the change score in cultural competence knowledge demonstrated by the medical students after completing a precourse and postcourse 40-item multiple-choice questionnaire. RESULTS: Forty-seven medical students in the control group and 62 medical students in the intervention group completed both the pretest and posttest. The overall knowledge scores in the intervention group increased by 19%, compared to a 4% increase in the controls (p < .01). CONCLUSIONS: Third-year medical students in the intervention group were significantly empowered with cultural competence knowledge when compared to the control group.


Subject(s)
Cultural Competency , Curriculum , Education, Medical, Undergraduate/methods , Adult , Educational Measurement , Female , Humans , Knowledge , Male , Program Development , Program Evaluation , Students, Medical , Surveys and Questionnaires
19.
J Gen Intern Med ; 24(3): 299-304, 2009 Mar.
Article in English | MEDLINE | ID: mdl-19101773

ABSTRACT

BACKGROUND: Genetic variation research (GVR) may raise concerns about misuse of information and discrimination. Seemingly contradictory positive views about GVR have also been reported. OBJECTIVE: To dissect this inconsistency, our objectives were to: (1) explore open-ended views of GVR and (2) quantify views of and willingness to participate in GVR by race. DESIGN: Cross-sectional study. PARTICIPANTS: 801 African-American and white prior participants in a case-control genetic epidemiology study of colon cancer risks (NCCCS). MEASURES: Qualitative measures evaluated responses to questions about good and bad things about GVR. Quantitative measures evaluated positive and negative perceptions, perceptions of discrimination, and likelihood of future participation by race. RESULTS: Open-ended queries about GVR resulted in few "negative" responses. In closed-ended questions, however, African Americans were more likely to feel that such research would: result in higher insurance (41% vs. 30%, p = 0.008), not benefit minorities (29% vs. 14%, p=<0.001), reinforce racism (32% vs. 20%, p = 0.002), and use minorities as guinea pigs (27% vs. 6%, p < 0.001). Overall, after adjustment for potential confounding factors, African-American race remained inversely associated with feeling "very positive" about GVR (46% vs. 57%, p = 0.035). In contrast, African Americans were as likely as whites to express willingness to participate in future GVR studies (46%). CONCLUSIONS: Open-ended questions about GVR were unlikely to spontaneously generate "negative" responses. In contrast, when presented specific examples of potentially negative implications, more respondents agreed, and minorities were more likely to express concerns. This suggests that while participants appear generally positive about GVR, their inability to articulate views regarding these complex concepts may require that researchers engage lay audiences, ensure accurate understanding, and provide them with language to express concerns.


Subject(s)
Black or African American , Colonic Neoplasms/ethnology , Genetic Predisposition to Disease/ethnology , Health Knowledge, Attitudes, Practice , Research Subjects , White People , Adult , Aged , Aged, 80 and over , Colonic Neoplasms/genetics , Cross-Sectional Studies , Female , Humans , Interviews as Topic , Male , Middle Aged , Patient Participation , Public Opinion
20.
Cancer Epidemiol Biomarkers Prev ; 17(8): 2019-24, 2008 Aug.
Article in English | MEDLINE | ID: mdl-18708393

ABSTRACT

Given the prohibitive cost of recruiting large and diverse populations for genetic explorations in cancer research, there has been a call for genetic studies to engage existing cohorts of research participants. This strategy could lead to more efficient recruitment and potentially result in significant advances in the understanding of cancer etiology and treatment. The Learning About Research in North Carolina (LeARN) study responded to the National Human Genome Research Institute interest in research on how study participants from diverse populations who had participated in genetic research perceived the risks and benefits of participating in combined epidemiologic-genetic research, how well they understand the purpose of the research and the uses to which the research results may be put, and how involvement in such research affects perceptions of disease causality. In this article, we give an overview of the LeARN study, summarizing the methods we used, challenges we encountered, and lessons learned about recruiting participants who have previously participated in genetic research.


Subject(s)
Genetic Research , Neoplasms/genetics , Research Subjects/psychology , Cross-Sectional Studies , Humans , Interviews as Topic , Longitudinal Studies , North Carolina
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