Pilot Intervention Outcomes of an Educational Program for Biospecimen Research Participation

Kiviniemi, Marc T.; Saad‐Harfouche, Frances G.; Ciupak, Gregory; Davis, Warren; Moysich, Kirsten B.; Hargrave, Nikia Clark; Ambrosone, Christine B.; Walker, Charles; Erwin, Deborah O.

doi:10.1007/s13187-012-0434-0

Cited by 37 publications

(43 citation statements)

References 26 publications

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“…In addition, the donation rate for open events was significantly higher than for the educational programs (55 vs 36 %); this may reflect more of a methodological expediency difference than a choice by participants. Kiviniemi et al (2013) also found a significantly higher participation rate for community fairs versus educational programs; χ 2 (1) = 9.44, p < 0.05. There is a time element involved with the number of participants waiting at any one time to donate blood and the maximum capacity for processing specimens per hour in the mobile laboratory.…”

Section: Discussionmentioning

confidence: 88%

“…As shown in prior studies, being asked to participate is essential, and the convenience of participating at the community level is important, rather than having to seek out the opportunity at a research center (Hagiwara et al 2014;Kiviniemi et al 2013). Regardless of information transfer method (i.e., open event or structured group education), transparency in explaining the process and what is being asked of the participant, as well as providing examples of research that are relevant to the community or population of interest, is critical in engaging diverse disease-free (i.e., without a cancer diagnosis) adults in biospecimen donation Tong et al 2014).…”

Section: Limitations/strengthsmentioning

confidence: 99%

“…However, community outreach that includes education on biospecimen research practices and efforts has resulted in a high level of interest in biospecimen donation Dash et al 2014;Hagiwara et al 2014;Kiviniemi et al 2013;Luque et al 2012;Rodriguez et al 2013;Tong et al 2014). A commonly cited barrier to biomedical research participation among African Americans is Bmedical mistrust,^but findings from Hagiwara et al (2014) and Dash et al (2014) both support that this is not the most reported barrier for biospecimen donation among this population.…”

Section: Introductionmentioning

confidence: 99%

“…Results from previous pilot studies with Hispanics and African Americans, as well as the development of the education program with Hispanic and African American community partners, have been presented elsewhere Kiviniemi et al 2013;Meade et al 2015;Rodriguez et al 2013).…”

Section: Introductionmentioning

confidence: 99%

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Engaging diverse populations in biospecimen donation: results from the Hoy y Mañana study

et al. 2016

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The disproportionately lower number of certain subpopulations participating in clinical and prevention research has a significant impact on the representativeness of scientific outcomes. The Hoy y Mañana program (Today and Tomorrow) was developed as a culturally and linguistically appropriate education program to engage diverse medically underserved populations without a cancer diagnosis in biospecimen donation for cancer genomic research. Participants were recruited to in-depth community-based educational programs (∼45-60-min duration) or during open events in the community based on a convenience sampling. Programs were offered in English and Spanish. An on-site mobile lab along with phlebotomy services was provided at all programs and events to collect participant biospecimen (blood) samples to be stored at the cancer center's Data Bank and BioRepository (DBBR). The distributions for education, race/ethnicity, and gender were similar across the event types. Most of the participants were women. The analysis sample had a total of 311 participants, including 231 from the education programs and 80 participants from open events. Those with a higher education (college or more) were more likely to donate than those with a lower level of education (high school or less) (45 vs 28 %, p = 0.007). Actual donation status was not associated with age or race. Willingness to donate a biospecimen and biospecimen donation rates followed the same pattern with respect to participants with higher levels of education being more willing to donate and giving a blood donation. Prior to outreach efforts, less than 6 % of specimens donated to DBBR from healthy/non-cancer patients were from minority participants.

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Section: Discussionmentioning

confidence: 88%

Section: Limitations/strengthsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Engaging diverse populations in biospecimen donation: results from the Hoy y Mañana study

et al. 2016

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“…The participation of African-Americans in biospecimen research is low despite the disparate cancer burden in this population (Luque et al 2012;Kiviniemi et al 2013). Results from studies utilizing qualitative data from focus groups suggests that some perceived barriers related to biospecimen donation might be related to lack of information or knowledge on biospecimens/biobanking, fear of collection procedures, and general mistrust of researchers.…”

Section: Introductionmentioning

confidence: 99%

Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community

et al. 2014

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Although research involving biospecimens is essential in advancing cancer research, minorities, especially African-Americans, are underrepresented in such research. We conducted a mixed-method (qualitative focus groups among African-Americans and quantitative cross-sectional surveys) study on factors associated with biospecimen knowledge and donation intent in the medically underserved urban communities in Southeast and Southwest Washington, DC. Focus groups were conducted among 41 African-Americans and survey data was available from 302 community residents of different races/ethnicities using convenience sampling. We used logistic regression to model the association between biospecimen knowledge and donation intent with selected sociodemographic variables using survey data. Only 47 % of the participants had knowledge of the different types of biospecimens. In multivariate logistic regression models, male gender, African-American race, and low education levels were significantly associated with lower knowledge about biospecimens. Compared to Whites (79 %), fewer AfricanAmericans (39 %) and Hispanics (57 %) had knowledge of biospecimens but the difference was significant for AfricanAmericans only. Positive intent to donate biospecimens for research was observed among 36 % of the survey respondents. After multivariate adjustment, only biospecimen knowledge was associated with donation intent (odds ratio = 1.91, 95 % confidence interval 1.12, 3.27). Contrary to popular opinion, "mistrust of the medical community" was not the most commonly reported barrier for biospecimen donation among African-Americans. "Not knowing how biospecimens will be used" and "lack of knowledge of biospecimens" were the most common barriers. Our study highlights the importance of education on biospecimens among community residents to increase minority participation in biospecimen research.

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Engaging the Practitioner: “But Wait, That’s Not All!”—Collaborations with Practitioners and Extending the Reasons You Started Doing Research in the First Place

Kiviniemi

2019

Strategies for Team Science Success

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Pilot Intervention Outcomes of an Educational Program for Biospecimen Research Participation

Cited by 37 publications

References 26 publications

Engaging diverse populations in biospecimen donation: results from the Hoy y Mañana study

Engaging diverse populations in biospecimen donation: results from the Hoy y Mañana study

Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community

Engaging the Practitioner: “But Wait, That’s Not All!”—Collaborations with Practitioners and Extending the Reasons You Started Doing Research in the First Place

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