- Email: [email protected]
Community events as viable sites for recruiting minority volunteers who agree to be contacted for future research
Contemporary Clinical Trials 32 (2011) 369–371
Contents lists available at ScienceDirect
Contemporary Clinical Trials j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / c o n c l i n t r i a l
Short communication
Community events as viable sites for recruiting minority volunteers who agree to be contacted for future research Wendy Pechero Bishop a,⁎, Jasmin A. Tiro a, Simon J. Craddock Lee b, Corinne M. Bruce a,1, Celette Sugg Skinner a a
Division of Behavioral and Communication Sciences, Department of Clinical Sciences and Simmons Cancer Center, University of Texas Southwestern Medical Center, Dallas, TX, United States b Division of Ethics and Health Policy, Department of Clinical Sciences and Simmons Cancer Center, University of Texas Southwestern Medical Center, Dallas, TX, United States
a r t i c l e
i n f o
Article history: Received 22 October 2010 Accepted 20 January 2011 Keywords: Minority recruitment Registry Community events
a b s t r a c t Reaching out to medically underserved racial/ethnic groups is a key challenge in population research. To increase their participation opportunities, we asked adults attending community events to complete a survey about their health concerns and invited them to join a registry of individuals agreeing to future study invitation. Approximately 66% of the 2298 survey responders joined the registry. Multivariate analysis showed that Hispanics were more likely to agree to contact than Whites. Agreers endorsed a wider range of health concerns than non‐ agreers. © 2011 Elsevier Inc. All rights reserved.
1. Introduction It is important, but often far from easy, to offer community members fair and equitable opportunities to participate in research. Recruitment of participants from medically underserved and underrepresented minority groups remains one of the greatest challenges in conducting population research. Multiple factors such as culture, gender, age, socioeconomic status, and trust may affect whether people are invited or choose to participate in research. Even with the National Institutes of Health guidelines for inclusion of minorities and resulting efforts to enhance their participation, researchers continue having difficulty in enrolling minority populations [1]. The widely held view that racial and ethnic minority
groups are less willing than non-Hispanic Whites to participate in health research is debatable [2–4]. Among community members and researchers, reasons for poor participation differ [5]. Minorities have reported that their biggest impediment to study participation is not being invited to participate [6,7]. In contrast, investigators have cited lack of access to racial/ethnic minority groups and lack of experience with successful recruitment strategies [1,8]. Registries of individuals agreeing to be contacted for health research might diminish these barriers and be a viable recruitment method. In Dallas, Texas during fall of 2009, we attended large community-based events and gave attendees opportunities to sign up for our research registry. 2. Material and methods
⁎ Corresponding author at: UT Southwestern Medical Center, 5323 Harry Hines Blvd., Dallas, TX 75390–9066, United States. Tel.: +1 214 648 6489; fax: +1 214 648 3934. E-mail addresses: [email protected] (W.P. Bishop), [email protected] (C.M. Bruce). 1 Present address: Research Coordinator, Vanderbilt University Medical Center, Center for Health Services Research, 1215 21st Avenue South, MCE Suite 6000, Nashville, TN 37232, United States. Tel.: + 1 615 936 4819; fax: + 1 615 936 1269. 1551-7144/$ – see front matter © 2011 Elsevier Inc. All rights reserved. doi:10.1016/j.cct.2011.01.012
At three major cultural events, VIVA Dallas, Feria de Salud, and Kwanzaafest, our ethnically diverse and bilingual research team set up university-branded booths and approached adult attendees (age ≥18 years old), asking them to complete a UT Southwestern Institutional Review Board (IRB) approved survey in English or Spanish, assessing (1) demographic characteristics, (2) health care access, (3) acculturation,
370
W.P. Bishop et al. / Contemporary Clinical Trials 32 (2011) 369–371
(4) health-related concerns, and (5) agreement to be contacted for future studies (join a research registry). Here we report (a) numbers of persons who completed surveys (b) percentage of survey completers who agreed to contact for future research, (c) individual characteristics associated with agreement for contact, and (d) differences between those who did and did not agree to future contact. Survey completers received a university-branded water bottle, regardless of whether they agreed to future contact. Survey, with registry option, received human subject approval from the University of Texas Southwestern Medical Center's IRB. 2.1. Measures The survey assessed five demographic characteristics (age, race, ethnicity, marital, and parental status). Health care access was assessed by insurance status, whether respondents had a usual source of health care and if so, where. Acculturation was measured via Marin and Marin's 4-item scale [9]. Respondents indicated their health concern(s) by selecting from the following: asthma, cancer, depression, diabetes, heart disease, obesity, pregnancy, sexually transmitted infections, alcohol use, exercise, healthy eating, immunizations, tobacco use/ secondhand smoke, access to medical/dental care, communicating with doctor, stress management, and violence. Those agreeing to future contact provided phone numbers and mailing addresses. 2.2. Analyses We ran frequencies to depict characteristics of survey completers and χ2 tests to examine what factors were associated with agreement to future contact. Multivariate logistic regressions were conducted to identify factors associated with agreement. To examine whether health concerns differed by agreement and race/ethnicity, we calculated Mantel–Haenszel tests for homogeneity and ran logistic regressions. 3. Results Among the 2298 individuals who completed the survey, 49.3% were Hispanic, 11.1% were non-Hispanic White, and 31.9% were African American. Age ranged from 18 to 89 years. Most survey completers were b50 years old (69%), female (69%), parents (70%), married (57%), more acculturated (58%), born in the US (52%), insured (53%), and had a usual source for health care (66%). Nearly two-thirds agreed to future contact, joined the registry, and provided contact information (Table 1). In bivariate analyses, these factors were significantly associated (p b 0.01) with agreement for contact: age b50 years, Hispanic ethnicity, female, being a parent, lower acculturation scores, no insurance, and no usual source for health care. However, in multivariate analysis, only race/ ethnicity remained significant; Hispanics were more likely than non-Hispanic Whites to agree to contact (OR = 2.45, 95% CI = 1.75, 3.43) whereas African Americans' agreement rate was similar to non-Hispanic Whites (OR = 1.01, 95% CI = 0.65, 1.58 and OR = 1.00, 95% CI = 0.74, 1.36). After controlling for race/ethnicity, those agreeing to contact for future research, compared to those not agreeing, were more likely to be concerned about 11 out of the 17
Table 1 Characteristics of survey completers and those agreeing to future contact, fall 2009 (N = 2298). Variables
Age group 18–30 31–40 41–50 51–64 65+ Missing Age ≤50 yrs N50 yrs Missing Sex Male Female Missing Marital status Married/living with partner Separated/divorced/ widowed Never married Missing Parental status Yes No Race/ethnicity Non-Hispanic African-American Non-Hispanic White Hispanic AI/AN, Asian/PI, other Born in US Yes No Missing Acculturation Lower Higher Missing Health care coverage Yes No Missing Usual source of care Yes No Missing Go most often for care Private doctor Parkland clinic (county safety-net) Free clinic Emergency room Other/missing
Total (N = 2298)
Yes to future contact (Overall: 60.4%, 1387/2298)
%
%
21.8 24.6 22.4 17.6 3.8 9.7
66.3 67.1 65.8 59.3 64.8 17.9
68.8 21.5 9.7
66.4 60.2 17.9
24.9 69.3 5.8
61.4 64.1 10.5
56.9
61.4
19.5
61.2
21.6 2.0
57.7 48.9
70.3 29.7
63.1 53.9
31.9
55.1
11.1 49.3 7.7
48.8 69.2 41.8
51.9 37.3 10.7
60.4 67.4 36.0
29.3 57.5 13.1
73.4 58.4 39.7
53.0 37.0 10.1
59.2 65.8 46.8
66.1 12.6 21.4
61.1 66.8 54.2
61.3 20.8
56.6 69.3
6.2 5.3 6.3
68.1 66.7 66.7
p-value 0.000
0.000
0.000
0.197
0.000
0.000
0.000
0.000
0.000
0.001
0.000
health topics—asthma (OR = 1.57, 95% CI = 1.24, 1.98), cancer (OR = 1.49, 95% CI= 1.20, 1.86), depression (OR = 1.35, 95% CI= 1.11, 1.64), diabetes (OR = 1.29, 95% CI = 1.09, 1.54), heart disease (OR = 1.35, 95% CI = 1.12, 1.62), obesity (OR = 1.48, 95% CI = 1.22, 1.79), STDs (OR = 1.43, 95% CI= 1.12, 1.82), healthy eating (OR = 1.49, 95% CI = 1.25, 1.78), immunizations
W.P. Bishop et al. / Contemporary Clinical Trials 32 (2011) 369–371
(OR = 1.72, 95% CI = 1.29, 2.29), access to medical/dental care (OR = 1.60, 95% CI = 1.32, 1.94), and stress management (OR = 1.27, 95% CI= 1.06, 1.51). 4. Discussion We successfully recruited a registry population with higher proportions of Hispanics (69.2%) and African Americans (55.1%) than the overall Dallas county population (38.9% and 20.7%, respectively [10]). Agreement for contact was high, especially among minority groups often not included in studies. Other than race/ethnicity, none of the sociodemographic and health care access and utilization factors remained associated with registry participation in multivariate analyses. This suggests no difference between registry participants and non-participants and bodes well for research studies using the registry to recruit community members. Compared to those who did not agree, those agreeing to future contact were more likely to be concerned with a wide range of health topics. 5. Conclusions Results show large proportions of minorities attending community events are willing to be invited for research and that such events are viable outreach settings for recruiting diverse populations into registries. Increasing academic medical centers' visibility among minority communities and communicating that researchers are interested in community members' health concerns are central to successful recruitment for research registries. Using such registries to invite study participation may help address disparities in access to and participation in health research. Human participant protection This study was approved by the Institutional Review Board at the University of Texas Southwestern Medical Center, IRB Number-072009-21. Authors' contributions WP Bishop, led the writing of this article, assisted with the statistical analysis, study design, interpretation of data and
371
supervised the overall data collection. JA Tiro led the statistical analysis, assisted in the study design, and interpretation of data. CM Bruce performed the data collection and assisted with the statistical analysis. CS Skinner and SC Lee assisted in the study design and interpretation of data. All authors contributed to the writing, review and editing of the drafts of the article and approved this version. Acknowledgments This research was supported by the Harold C. Simmons Cancer Center. The authors thank staff members Katharine McCallister, Ann Marie Torres, Adam Loewen, Josie Rossitto, and other UT Southwestern volunteers for their assistance with the data collection and the many people who completed health topic surveys at community events. References [1] Paskett ED, Reeves KW, McLaughlin JM, Katz MK, McAlearney AS, Ruffin MT, et al. Recruitment of minority and underserved populations in the United States: the Centers for Population Health and Health Disparities experience. Contemp Clin Trials 2008;29:847–61. [2] Pinsky PF, Ford M, Gamito E, Higgins D, Jenkins V, Lamerato L, et al. Enrollment of racial and ethnic minorities in the Prostrate, Lung, Colorectal and Ovarian Cancer Screening Trial. J Natl Med Assoc 2002;100(3):291–8. [3] Kennedy BM, Kumanyika S, Ard JD, Reams P, Johnson CA, Karanja N, et al. Overall and minority-focused recruitment strategies in the PREMIER multicenter trial of lifestyle interventions for blood pressure control. Contemp Clin Trials 2010;31:49–54. [4] Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol 2002;12(4):248–56. [5] Robinson JM, Trochim WM. An examination of community members', researchers' and health professionals' perceptions of barriers to minority participation in medical research: an application of concept mapping. Ethn Health 2007;12(5):521–39. [6] Wendler D, Kington R, Madans J, Van WG, Christ-Schmidt H, Pratt LA, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med 2006;3(2):e19. [7] Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer 2008;112(2):228–42. [8] Williams IC, Corbie-Smith G. Investigator beliefs and reported success in recruiting minority participants. Contemp Clin Trials 2006;27:580–6. [9] Marin G, Marin B. Issues in identifying Hispanics. Research with Hispanic Populations. Newbury Park: Sage Publications; 1991. p. 18–41. [10] US Census Bureau. State and county quickfacts: Texas. 2009 Available from: URL:http://www.quickfacts.census.gov/qfd/states/48000.html 2007.
Contents lists available at ScienceDirect
Contemporary Clinical Trials j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / c o n c l i n t r i a l
Short communication
Community events as viable sites for recruiting minority volunteers who agree to be contacted for future research Wendy Pechero Bishop a,⁎, Jasmin A. Tiro a, Simon J. Craddock Lee b, Corinne M. Bruce a,1, Celette Sugg Skinner a a
Division of Behavioral and Communication Sciences, Department of Clinical Sciences and Simmons Cancer Center, University of Texas Southwestern Medical Center, Dallas, TX, United States b Division of Ethics and Health Policy, Department of Clinical Sciences and Simmons Cancer Center, University of Texas Southwestern Medical Center, Dallas, TX, United States
a r t i c l e
i n f o
Article history: Received 22 October 2010 Accepted 20 January 2011 Keywords: Minority recruitment Registry Community events
a b s t r a c t Reaching out to medically underserved racial/ethnic groups is a key challenge in population research. To increase their participation opportunities, we asked adults attending community events to complete a survey about their health concerns and invited them to join a registry of individuals agreeing to future study invitation. Approximately 66% of the 2298 survey responders joined the registry. Multivariate analysis showed that Hispanics were more likely to agree to contact than Whites. Agreers endorsed a wider range of health concerns than non‐ agreers. © 2011 Elsevier Inc. All rights reserved.
1. Introduction It is important, but often far from easy, to offer community members fair and equitable opportunities to participate in research. Recruitment of participants from medically underserved and underrepresented minority groups remains one of the greatest challenges in conducting population research. Multiple factors such as culture, gender, age, socioeconomic status, and trust may affect whether people are invited or choose to participate in research. Even with the National Institutes of Health guidelines for inclusion of minorities and resulting efforts to enhance their participation, researchers continue having difficulty in enrolling minority populations [1]. The widely held view that racial and ethnic minority
groups are less willing than non-Hispanic Whites to participate in health research is debatable [2–4]. Among community members and researchers, reasons for poor participation differ [5]. Minorities have reported that their biggest impediment to study participation is not being invited to participate [6,7]. In contrast, investigators have cited lack of access to racial/ethnic minority groups and lack of experience with successful recruitment strategies [1,8]. Registries of individuals agreeing to be contacted for health research might diminish these barriers and be a viable recruitment method. In Dallas, Texas during fall of 2009, we attended large community-based events and gave attendees opportunities to sign up for our research registry. 2. Material and methods
⁎ Corresponding author at: UT Southwestern Medical Center, 5323 Harry Hines Blvd., Dallas, TX 75390–9066, United States. Tel.: +1 214 648 6489; fax: +1 214 648 3934. E-mail addresses: [email protected] (W.P. Bishop), [email protected] (C.M. Bruce). 1 Present address: Research Coordinator, Vanderbilt University Medical Center, Center for Health Services Research, 1215 21st Avenue South, MCE Suite 6000, Nashville, TN 37232, United States. Tel.: + 1 615 936 4819; fax: + 1 615 936 1269. 1551-7144/$ – see front matter © 2011 Elsevier Inc. All rights reserved. doi:10.1016/j.cct.2011.01.012
At three major cultural events, VIVA Dallas, Feria de Salud, and Kwanzaafest, our ethnically diverse and bilingual research team set up university-branded booths and approached adult attendees (age ≥18 years old), asking them to complete a UT Southwestern Institutional Review Board (IRB) approved survey in English or Spanish, assessing (1) demographic characteristics, (2) health care access, (3) acculturation,
370
W.P. Bishop et al. / Contemporary Clinical Trials 32 (2011) 369–371
(4) health-related concerns, and (5) agreement to be contacted for future studies (join a research registry). Here we report (a) numbers of persons who completed surveys (b) percentage of survey completers who agreed to contact for future research, (c) individual characteristics associated with agreement for contact, and (d) differences between those who did and did not agree to future contact. Survey completers received a university-branded water bottle, regardless of whether they agreed to future contact. Survey, with registry option, received human subject approval from the University of Texas Southwestern Medical Center's IRB. 2.1. Measures The survey assessed five demographic characteristics (age, race, ethnicity, marital, and parental status). Health care access was assessed by insurance status, whether respondents had a usual source of health care and if so, where. Acculturation was measured via Marin and Marin's 4-item scale [9]. Respondents indicated their health concern(s) by selecting from the following: asthma, cancer, depression, diabetes, heart disease, obesity, pregnancy, sexually transmitted infections, alcohol use, exercise, healthy eating, immunizations, tobacco use/ secondhand smoke, access to medical/dental care, communicating with doctor, stress management, and violence. Those agreeing to future contact provided phone numbers and mailing addresses. 2.2. Analyses We ran frequencies to depict characteristics of survey completers and χ2 tests to examine what factors were associated with agreement to future contact. Multivariate logistic regressions were conducted to identify factors associated with agreement. To examine whether health concerns differed by agreement and race/ethnicity, we calculated Mantel–Haenszel tests for homogeneity and ran logistic regressions. 3. Results Among the 2298 individuals who completed the survey, 49.3% were Hispanic, 11.1% were non-Hispanic White, and 31.9% were African American. Age ranged from 18 to 89 years. Most survey completers were b50 years old (69%), female (69%), parents (70%), married (57%), more acculturated (58%), born in the US (52%), insured (53%), and had a usual source for health care (66%). Nearly two-thirds agreed to future contact, joined the registry, and provided contact information (Table 1). In bivariate analyses, these factors were significantly associated (p b 0.01) with agreement for contact: age b50 years, Hispanic ethnicity, female, being a parent, lower acculturation scores, no insurance, and no usual source for health care. However, in multivariate analysis, only race/ ethnicity remained significant; Hispanics were more likely than non-Hispanic Whites to agree to contact (OR = 2.45, 95% CI = 1.75, 3.43) whereas African Americans' agreement rate was similar to non-Hispanic Whites (OR = 1.01, 95% CI = 0.65, 1.58 and OR = 1.00, 95% CI = 0.74, 1.36). After controlling for race/ethnicity, those agreeing to contact for future research, compared to those not agreeing, were more likely to be concerned about 11 out of the 17
Table 1 Characteristics of survey completers and those agreeing to future contact, fall 2009 (N = 2298). Variables
Age group 18–30 31–40 41–50 51–64 65+ Missing Age ≤50 yrs N50 yrs Missing Sex Male Female Missing Marital status Married/living with partner Separated/divorced/ widowed Never married Missing Parental status Yes No Race/ethnicity Non-Hispanic African-American Non-Hispanic White Hispanic AI/AN, Asian/PI, other Born in US Yes No Missing Acculturation Lower Higher Missing Health care coverage Yes No Missing Usual source of care Yes No Missing Go most often for care Private doctor Parkland clinic (county safety-net) Free clinic Emergency room Other/missing
Total (N = 2298)
Yes to future contact (Overall: 60.4%, 1387/2298)
%
%
21.8 24.6 22.4 17.6 3.8 9.7
66.3 67.1 65.8 59.3 64.8 17.9
68.8 21.5 9.7
66.4 60.2 17.9
24.9 69.3 5.8
61.4 64.1 10.5
56.9
61.4
19.5
61.2
21.6 2.0
57.7 48.9
70.3 29.7
63.1 53.9
31.9
55.1
11.1 49.3 7.7
48.8 69.2 41.8
51.9 37.3 10.7
60.4 67.4 36.0
29.3 57.5 13.1
73.4 58.4 39.7
53.0 37.0 10.1
59.2 65.8 46.8
66.1 12.6 21.4
61.1 66.8 54.2
61.3 20.8
56.6 69.3
6.2 5.3 6.3
68.1 66.7 66.7
p-value 0.000
0.000
0.000
0.197
0.000
0.000
0.000
0.000
0.000
0.001
0.000
health topics—asthma (OR = 1.57, 95% CI = 1.24, 1.98), cancer (OR = 1.49, 95% CI= 1.20, 1.86), depression (OR = 1.35, 95% CI= 1.11, 1.64), diabetes (OR = 1.29, 95% CI = 1.09, 1.54), heart disease (OR = 1.35, 95% CI = 1.12, 1.62), obesity (OR = 1.48, 95% CI = 1.22, 1.79), STDs (OR = 1.43, 95% CI= 1.12, 1.82), healthy eating (OR = 1.49, 95% CI = 1.25, 1.78), immunizations
W.P. Bishop et al. / Contemporary Clinical Trials 32 (2011) 369–371
(OR = 1.72, 95% CI = 1.29, 2.29), access to medical/dental care (OR = 1.60, 95% CI = 1.32, 1.94), and stress management (OR = 1.27, 95% CI= 1.06, 1.51). 4. Discussion We successfully recruited a registry population with higher proportions of Hispanics (69.2%) and African Americans (55.1%) than the overall Dallas county population (38.9% and 20.7%, respectively [10]). Agreement for contact was high, especially among minority groups often not included in studies. Other than race/ethnicity, none of the sociodemographic and health care access and utilization factors remained associated with registry participation in multivariate analyses. This suggests no difference between registry participants and non-participants and bodes well for research studies using the registry to recruit community members. Compared to those who did not agree, those agreeing to future contact were more likely to be concerned with a wide range of health topics. 5. Conclusions Results show large proportions of minorities attending community events are willing to be invited for research and that such events are viable outreach settings for recruiting diverse populations into registries. Increasing academic medical centers' visibility among minority communities and communicating that researchers are interested in community members' health concerns are central to successful recruitment for research registries. Using such registries to invite study participation may help address disparities in access to and participation in health research. Human participant protection This study was approved by the Institutional Review Board at the University of Texas Southwestern Medical Center, IRB Number-072009-21. Authors' contributions WP Bishop, led the writing of this article, assisted with the statistical analysis, study design, interpretation of data and
371
supervised the overall data collection. JA Tiro led the statistical analysis, assisted in the study design, and interpretation of data. CM Bruce performed the data collection and assisted with the statistical analysis. CS Skinner and SC Lee assisted in the study design and interpretation of data. All authors contributed to the writing, review and editing of the drafts of the article and approved this version. Acknowledgments This research was supported by the Harold C. Simmons Cancer Center. The authors thank staff members Katharine McCallister, Ann Marie Torres, Adam Loewen, Josie Rossitto, and other UT Southwestern volunteers for their assistance with the data collection and the many people who completed health topic surveys at community events. References [1] Paskett ED, Reeves KW, McLaughlin JM, Katz MK, McAlearney AS, Ruffin MT, et al. Recruitment of minority and underserved populations in the United States: the Centers for Population Health and Health Disparities experience. Contemp Clin Trials 2008;29:847–61. [2] Pinsky PF, Ford M, Gamito E, Higgins D, Jenkins V, Lamerato L, et al. Enrollment of racial and ethnic minorities in the Prostrate, Lung, Colorectal and Ovarian Cancer Screening Trial. J Natl Med Assoc 2002;100(3):291–8. [3] Kennedy BM, Kumanyika S, Ard JD, Reams P, Johnson CA, Karanja N, et al. Overall and minority-focused recruitment strategies in the PREMIER multicenter trial of lifestyle interventions for blood pressure control. Contemp Clin Trials 2010;31:49–54. [4] Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol 2002;12(4):248–56. [5] Robinson JM, Trochim WM. An examination of community members', researchers' and health professionals' perceptions of barriers to minority participation in medical research: an application of concept mapping. Ethn Health 2007;12(5):521–39. [6] Wendler D, Kington R, Madans J, Van WG, Christ-Schmidt H, Pratt LA, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med 2006;3(2):e19. [7] Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer 2008;112(2):228–42. [8] Williams IC, Corbie-Smith G. Investigator beliefs and reported success in recruiting minority participants. Contemp Clin Trials 2006;27:580–6. [9] Marin G, Marin B. Issues in identifying Hispanics. Research with Hispanic Populations. Newbury Park: Sage Publications; 1991. p. 18–41. [10] US Census Bureau. State and county quickfacts: Texas. 2009 Available from: URL:http://www.quickfacts.census.gov/qfd/states/48000.html 2007.