Brief Report Effectiveness of a Community Research Registry to Recruit Minority and Underserved Adults for Health Research Wendy Pechero Bishop, M.S., Jasmin A. Tiro, Ph.D., Joanne M. Sanders, M.S., Simon J. Craddock Lee, Ph.D., M.P.H., and Celette Sugg Skinner, Ph.D. Abstract Background: Recruiting minorities and underserved populations into population-based studies is a long standing challenge. This study examined the feasibility of recruiting adults from a community research registry. Methods: Ethnically diverse, bilingual staff attended health fairs, inviting adults to join a registry. We examined rates of successful contact, scheduling, and participation for studies that used the registry. Results: Five studies queried 6,886 research registry members (48% Hispanic and 38% black) and attempted to contact 2,301 potentially eligible participants; eligibility criteria varied across studies. We successfully contacted 1,130 members, 51.9% were scheduled to participate and of those, 60.8% completed their study appointment. Non-Hispanic whites were less likely than Hispanics to be interested, but among those scheduling an appointment, participation did not differ by race/ethnicity. Conclusion: Community research registries are a feasible and efficient method for recruiting minority and underserved adults and may address disparities in access to and participation in health research. Clin Trans Sci 2015; Volume 8: 82–84
Keywords: minority recruitment, registry, community events, health disparities, African Americans, Hispanics Inclusion of racial and ethnic groups in health research studies is important for equitable participation opportunities1,2 and to ensure generalizability. Recruiting underserved, “hard-to-reach” minority populations has been and continues to be a challenge.3,4 Individual-level barriers to participation include mistrust of the medical system and poor awareness of participation opportunities,5,6 especially among African Americans.4,7 Less is known about Hispanic populations, particularly Spanish speakers.1 We hypothesized low participation by minority populations may be minimized by establishing a registry of community members willing to be invited for research. Through NIH funding, the UT Southwestern Center for Translational Medicine and the Harold C. Simmons Cancer Center supported recruitment of community members attending health fairs and cultural events into a registry. Our systematic outreach at community events and factors associated with joining the registry has been previously described.8 Here, we report recruitment outcomes (successful contact, interest, and participation), including whether outcomes varied by race/ ethnicity. Material and Methods
Adults attending health fairs and cultural events between 2009 and 2012 were invited to complete a brief survey and join the Community Research Registry. From March 2010 to July 2012, the Registry was used to recruit for five studies requiring an in-person interview. The aims for each study were as follows. Study 1 examined conceptual equivalence of a Spanish translated computerized colorectal cancer risk assessment program; study 2 evaluated Spanish speaking parents’ exposure to media coverage of the HPV vaccine; study 3 developed English and Spanish HPV vaccine educational materials for safety-net primary care clinics; study 4 assessed the validity of a single literacy question against a standardized health literacy measure in English- and Spanishspeaking populations; study 5 compared computerized versus traditional neuropsychological tests in African Americans and
Hispanic males. UT Southwestern Medical Center’s institutional review board approved all five studies. Sociodemographic information in the Registry enabled researchers to streamline recruitment by applying eligibility criteria and identifying potential candidates. For each study, potential candidates were mailed an invitation letter in English or Spanish (based on language preference) signed by the principal investigator. The letter described the study and provided a toll-free number to opt out. After a few days, bilingual staff called to assess eligibility and ascertain interest. Mail and call results (e.g., mail undeliverable, wrong number, no answer, or eligible and scheduled) were documented in a recruitment database. All studies involved noninvasive procedures such as cognitive interviews and surveys, but participants did need to attend in-person interviews ranging from 45 minutes to 2 hours. Staff delivered a reminder call 1–2 days before an appointment. Participants received a $10–$25 gift card. We computed three binary variables: successful contact, interest, and participation. Among Registry members who did not opt out, had valid contact information, and for whom contact was attempted, we counted members as a successful contact if staff spoke to them by telephone. Interest in study participation was defined as contacted members willing to answer eligibility questions. Among members who were eligible and scheduled an appointment, participation was defined as completing a study appointment. If a Registry member was recruited for multiple studies, we used the study with the most favorable recruitment outcome. To examine whether recruitment outcomes differed by race/ ethnicity, we conducted multivariate logistic regression for each binary outcome with race/ethnicity as the main independent variable controlling for study affiliation (potential confounding variable as each study’s eligibility criteria varied with respect to race/ethnicity). We excluded Asians and multiracial Registry members from multivariate analyses due to small sample size (n = 56). Statistical significance was defined as p < 0.05.
Division of Behavioral and Communication Sciences, Department of Clinical Sciences, University of Texas Southwestern Medical Center and Harold C. Simmons Cancer Center, Dallas, Texas, USA . Correspondence: Wendy Pechero Bishop ([email protected]) DOI: 10.1111/cts.12231
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did not show for the appointment; and (8) participated. Only 156 members had nonworking contact information. Mean number of call attempts to a Registry member ranged from 1.3 to 3.1 per study. We successfully contacted 50% (1,130/2,103), about half of whom were interested and answered eligibility questions (587/1,130). These interested individuals were: 4.9% non-Hispanic white; 64.6% Hispanic; 29.1% non-Hispanic black; and 1.4% Asian/multiracial. Only one person withdrew from the Registry; 28 were ineligible. Among Registry members eligible and scheduled, 60.8% completed participation (15 members participated in two studies). For outcome #1 in Figure 1, there were no significant differences in odds of successful contact by race/ethnicity controlling for study affiliation. For outcome #2, non-Hispanic whites were less likely than Hispanics to be interested enough in participation to answer eligibility questions (adjusted OR: 0.57, 95% CI: 0.34–0.93). However, among those who expressed enough interest to have their eligibility assessed and be invited (outcome #3), there was no difference in actual participation by race/ethnicity. Discussion
Figure 1. Recruitment process and outcomes from the Dallas community research registry (n = 2,301).
Results
The Registry is composed of 6,896 members who are 47.9% Hispanic, 38.2% non-Hispanic black, and 9.5% non-Hispanic white. They are equally divided between those born in (48.3%) and outside (48.1%) the United States. Nearly, a third (30.4%) completed the Spanish rather than English version of the survey. Most (74.1%) are female. Although 74% have a usual source of care, only 55.8% have health care coverage. Queries for the five studies identified 5,323 unique individuals potentially eligible for one or more. As shown in Figure 1, we attempted to recruit 2,301 (33.4% of total); 493 were contacted for two separate studies and 10 members were contacted for three. The sociodemographic and healthcare access characteristics for those attempted to recruit and those reached were similar to the Registry members. Figure 1 displays participant flow through the recruitment process: (1) opted out; (2) no call attempts because accrual complete; (3) nonworking contact information; (4) unable to contact; (5) not interested; (6) not eligible; (7) scheduled but WWW.CTSJOURNAL.COM
Our study supports feasibility of using community research registries to recruit minority adults historically labeled “hard to reach.” Because contact and participation rates did not vary by race/ethnicity, our findings support previous studies’ suggestion that disparities in research participation may stem from lack of invitation rather than lack of interest or higher refusal rates among minorities.9,10 Indeed, Hispanics were more likely than non-Hispanic whites to express interest and have their eligibility assessed. And, among those identified as eligible, Hispanics and non-Hispanic blacks were as likely as non-Hispanic whites to present for participation. Limitations of our research include the facts that Registry participants were recruited in only one geographic area and all recruitment took place in community event settings. Whether response to study invitations would be similar if Registry members were originally recruited through another venue cannot be determined. However, our findings suggest that Registries of individuals recruited through community-based events have the ability to increase participation in health research among those who are often under-represented in studies. Conflict of Interest
The authors have no financial disclosures or conflicts of interest with this study. Acknowledgments
This work was conducted with support from UT Southwestern Center for Translational Medicine, NIH/NCATS Grant Number UL1TR001105 as well as Cancer Center Support Grant Number 5 P30 CA142543–02. References 1. Sheppard VB, Cox LS, Kanamori MJ, Cañar J, Rodríguez Y, Goodman M, Pomeroy J, Mandelblatt J, Huerta EE; Latin American Cancer Research Coalition. If you build it, they will come. Methods for recruiting Latinos in cancer research. J Gen Intern Med. 2005; 20: 444–447. 2. Paskett ED, Reeves KW, McLaughlin JM, Katz ML, McAlearney AS, Ruffin MT, Halberte CH, Mereteg C, Davish F, Gehlert S. Recruitment of minority and underserved populations in the United States: the centers for population Health & Health Disparities Experience. Contemp Clin Trials. 2008; 29(6): 847–861. 3. Katz RV, Green BL, Kressin NR, Claudio C, Wang MQ, Russell SL. Willingness of minorities to participate in biomedical studies: confirmatory findings from a follow-up study using the Tuskegee Legacy Project Questionnaire. J Natl Med Assoc. 2007; 99: 1052–1060.
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4. Yancey AK, Ortega AN, Kumanyika SK. Effective recruitment and retention of minority research participants. Annu Rev Public Health. 2006; 27: 1–28. 5. Murphy EJ, Wickramaratne P, Weissman MM. Racial and ethnic differences in willingness to participate in psychiatric genetic research. Psychiatr Genet. 2009; 19: 186–194.
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8. Bishop WP, Tiro JA, Lee SJ, Bruce CM, Skinner CS. Community events as viable sites for recruiting minority volunteers who agree to be contacted for future research. Contemp Clin Trials. 2011; 32: 369–371.
6. Braunstein JB, Sherber NS, Schulman SP, Ding EL, Powe NR. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials. Medicine (Baltimore). 2008; 87: 1–9.
9. Halbert CH, Kumanyika S, Bowman M, Bellamy SL, Briggs V, Brown S, Bryant B, Delmoor E, Johnson JC, Purnell J, et al. Participation rates and representativeness of African Americans recruited to a health promotion program. Health Educ Res. 2010; 25: 6–13.
7. Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, Tilburt J, Baffi C, Tanpitukpongse TP, Wilson RF, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer. 2008; 112: 228–242.
10. Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, Brawley OW, Gross CP, Emanue E. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2006; 3: e19.
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Copyright of CTS: Clinical & Translational Science is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Keywords: minority recruitment, registry, community events, health disparities, African Americans, Hispanics Inclusion of racial and ethnic groups in health research studies is important for equitable participation opportunities1,2 and to ensure generalizability. Recruiting underserved, “hard-to-reach” minority populations has been and continues to be a challenge.3,4 Individual-level barriers to participation include mistrust of the medical system and poor awareness of participation opportunities,5,6 especially among African Americans.4,7 Less is known about Hispanic populations, particularly Spanish speakers.1 We hypothesized low participation by minority populations may be minimized by establishing a registry of community members willing to be invited for research. Through NIH funding, the UT Southwestern Center for Translational Medicine and the Harold C. Simmons Cancer Center supported recruitment of community members attending health fairs and cultural events into a registry. Our systematic outreach at community events and factors associated with joining the registry has been previously described.8 Here, we report recruitment outcomes (successful contact, interest, and participation), including whether outcomes varied by race/ ethnicity. Material and Methods
Adults attending health fairs and cultural events between 2009 and 2012 were invited to complete a brief survey and join the Community Research Registry. From March 2010 to July 2012, the Registry was used to recruit for five studies requiring an in-person interview. The aims for each study were as follows. Study 1 examined conceptual equivalence of a Spanish translated computerized colorectal cancer risk assessment program; study 2 evaluated Spanish speaking parents’ exposure to media coverage of the HPV vaccine; study 3 developed English and Spanish HPV vaccine educational materials for safety-net primary care clinics; study 4 assessed the validity of a single literacy question against a standardized health literacy measure in English- and Spanishspeaking populations; study 5 compared computerized versus traditional neuropsychological tests in African Americans and
Hispanic males. UT Southwestern Medical Center’s institutional review board approved all five studies. Sociodemographic information in the Registry enabled researchers to streamline recruitment by applying eligibility criteria and identifying potential candidates. For each study, potential candidates were mailed an invitation letter in English or Spanish (based on language preference) signed by the principal investigator. The letter described the study and provided a toll-free number to opt out. After a few days, bilingual staff called to assess eligibility and ascertain interest. Mail and call results (e.g., mail undeliverable, wrong number, no answer, or eligible and scheduled) were documented in a recruitment database. All studies involved noninvasive procedures such as cognitive interviews and surveys, but participants did need to attend in-person interviews ranging from 45 minutes to 2 hours. Staff delivered a reminder call 1–2 days before an appointment. Participants received a $10–$25 gift card. We computed three binary variables: successful contact, interest, and participation. Among Registry members who did not opt out, had valid contact information, and for whom contact was attempted, we counted members as a successful contact if staff spoke to them by telephone. Interest in study participation was defined as contacted members willing to answer eligibility questions. Among members who were eligible and scheduled an appointment, participation was defined as completing a study appointment. If a Registry member was recruited for multiple studies, we used the study with the most favorable recruitment outcome. To examine whether recruitment outcomes differed by race/ ethnicity, we conducted multivariate logistic regression for each binary outcome with race/ethnicity as the main independent variable controlling for study affiliation (potential confounding variable as each study’s eligibility criteria varied with respect to race/ethnicity). We excluded Asians and multiracial Registry members from multivariate analyses due to small sample size (n = 56). Statistical significance was defined as p < 0.05.
Division of Behavioral and Communication Sciences, Department of Clinical Sciences, University of Texas Southwestern Medical Center and Harold C. Simmons Cancer Center, Dallas, Texas, USA . Correspondence: Wendy Pechero Bishop ([email protected]) DOI: 10.1111/cts.12231
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did not show for the appointment; and (8) participated. Only 156 members had nonworking contact information. Mean number of call attempts to a Registry member ranged from 1.3 to 3.1 per study. We successfully contacted 50% (1,130/2,103), about half of whom were interested and answered eligibility questions (587/1,130). These interested individuals were: 4.9% non-Hispanic white; 64.6% Hispanic; 29.1% non-Hispanic black; and 1.4% Asian/multiracial. Only one person withdrew from the Registry; 28 were ineligible. Among Registry members eligible and scheduled, 60.8% completed participation (15 members participated in two studies). For outcome #1 in Figure 1, there were no significant differences in odds of successful contact by race/ethnicity controlling for study affiliation. For outcome #2, non-Hispanic whites were less likely than Hispanics to be interested enough in participation to answer eligibility questions (adjusted OR: 0.57, 95% CI: 0.34–0.93). However, among those who expressed enough interest to have their eligibility assessed and be invited (outcome #3), there was no difference in actual participation by race/ethnicity. Discussion
Figure 1. Recruitment process and outcomes from the Dallas community research registry (n = 2,301).
Results
The Registry is composed of 6,896 members who are 47.9% Hispanic, 38.2% non-Hispanic black, and 9.5% non-Hispanic white. They are equally divided between those born in (48.3%) and outside (48.1%) the United States. Nearly, a third (30.4%) completed the Spanish rather than English version of the survey. Most (74.1%) are female. Although 74% have a usual source of care, only 55.8% have health care coverage. Queries for the five studies identified 5,323 unique individuals potentially eligible for one or more. As shown in Figure 1, we attempted to recruit 2,301 (33.4% of total); 493 were contacted for two separate studies and 10 members were contacted for three. The sociodemographic and healthcare access characteristics for those attempted to recruit and those reached were similar to the Registry members. Figure 1 displays participant flow through the recruitment process: (1) opted out; (2) no call attempts because accrual complete; (3) nonworking contact information; (4) unable to contact; (5) not interested; (6) not eligible; (7) scheduled but WWW.CTSJOURNAL.COM
Our study supports feasibility of using community research registries to recruit minority adults historically labeled “hard to reach.” Because contact and participation rates did not vary by race/ethnicity, our findings support previous studies’ suggestion that disparities in research participation may stem from lack of invitation rather than lack of interest or higher refusal rates among minorities.9,10 Indeed, Hispanics were more likely than non-Hispanic whites to express interest and have their eligibility assessed. And, among those identified as eligible, Hispanics and non-Hispanic blacks were as likely as non-Hispanic whites to present for participation. Limitations of our research include the facts that Registry participants were recruited in only one geographic area and all recruitment took place in community event settings. Whether response to study invitations would be similar if Registry members were originally recruited through another venue cannot be determined. However, our findings suggest that Registries of individuals recruited through community-based events have the ability to increase participation in health research among those who are often under-represented in studies. Conflict of Interest
The authors have no financial disclosures or conflicts of interest with this study. Acknowledgments
This work was conducted with support from UT Southwestern Center for Translational Medicine, NIH/NCATS Grant Number UL1TR001105 as well as Cancer Center Support Grant Number 5 P30 CA142543–02. References 1. Sheppard VB, Cox LS, Kanamori MJ, Cañar J, Rodríguez Y, Goodman M, Pomeroy J, Mandelblatt J, Huerta EE; Latin American Cancer Research Coalition. If you build it, they will come. Methods for recruiting Latinos in cancer research. J Gen Intern Med. 2005; 20: 444–447. 2. Paskett ED, Reeves KW, McLaughlin JM, Katz ML, McAlearney AS, Ruffin MT, Halberte CH, Mereteg C, Davish F, Gehlert S. Recruitment of minority and underserved populations in the United States: the centers for population Health & Health Disparities Experience. Contemp Clin Trials. 2008; 29(6): 847–861. 3. Katz RV, Green BL, Kressin NR, Claudio C, Wang MQ, Russell SL. Willingness of minorities to participate in biomedical studies: confirmatory findings from a follow-up study using the Tuskegee Legacy Project Questionnaire. J Natl Med Assoc. 2007; 99: 1052–1060.
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4. Yancey AK, Ortega AN, Kumanyika SK. Effective recruitment and retention of minority research participants. Annu Rev Public Health. 2006; 27: 1–28. 5. Murphy EJ, Wickramaratne P, Weissman MM. Racial and ethnic differences in willingness to participate in psychiatric genetic research. Psychiatr Genet. 2009; 19: 186–194.
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8. Bishop WP, Tiro JA, Lee SJ, Bruce CM, Skinner CS. Community events as viable sites for recruiting minority volunteers who agree to be contacted for future research. Contemp Clin Trials. 2011; 32: 369–371.
6. Braunstein JB, Sherber NS, Schulman SP, Ding EL, Powe NR. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials. Medicine (Baltimore). 2008; 87: 1–9.
9. Halbert CH, Kumanyika S, Bowman M, Bellamy SL, Briggs V, Brown S, Bryant B, Delmoor E, Johnson JC, Purnell J, et al. Participation rates and representativeness of African Americans recruited to a health promotion program. Health Educ Res. 2010; 25: 6–13.
7. Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, Tilburt J, Baffi C, Tanpitukpongse TP, Wilson RF, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer. 2008; 112: 228–242.
10. Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, Brawley OW, Gross CP, Emanue E. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2006; 3: e19.
VOLUME 8 • ISSUE 1
WWW.CTSJOURNAL.COM
Copyright of CTS: Clinical & Translational Science is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
