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

Abstract

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.

Factors associated with biomedical research participation within community‐based samples across 3 National Cancer Institute–designated cancer centers

“…This finding differs from recent studies demonstrating that African Americans are willing to donate biospecimens when offered the opportunity. Rodriguez et al found that community engagement efforts and initiatives that provide biospecimen donation education that also is tied to on‐site opportunities to donate biospecimens address awareness and access among diverse racial and ethnic minority participants, leading to actual participation . Study context and site characteristics are potentially significant factors in explaining these differences and may be overshadowed in the pooled analysis.…”

“…Rodriguez et al found that community engagement efforts and initiatives that provide biospecimen donation education that also is tied to on-site opportunities to donate biospecimens address awareness and access among diverse racial and ethnic minority participants, leading to actual participation. 16 Study context and site characteristics are Cancer March 1, 2020 potentially significant factors in explaining these differences and may be overshadowed in the pooled analysis. In addition, transparency with regard to the actual research opportunity and request for biospecimens is critical to engaging underserved communities with a specific study or actual intervention versus constructs as presented in the survey.…”

“…[13][14][15][16] Formative research efforts that are inclusive of diverse and underserved populations regarding biospecimen science have shed some light on the following areas: awareness and interest in biospecimen donation for research, reasons for nonparticipation, collaborative study designs that include community-based approaches to engage and integrate community research partners, and underserved populations in this type of research, in addition to data regarding cultural perspectives and requirements for research specific to biospecimen science. [14][15][16][17][18] In fact, exploratory studies examining motivational factors and barriers to participation in biospecimen donation from diverse racial and ethnic minorities have suggested that the majority of African Americans and Hispanics/ Latinos are willing to donate different types of biospecimens and that they do donate when asked. 19 The purpose of the current study was to examine factors associated with opportunity, actual participation, and willingness to participate in biomedical research broadly and specifically related to clinical trials and biospecimen donation among a diverse, multilingual sample across 3 distinct geographic areas.…”

Time, trust, and transparency: Lessons learned from collecting blood biospecimens for cancer research from the Asian American community

“…Similar to the studies conducted by Gao et al in 2014 and Rodriguez et al in 2016, we discovered that individuals would be willing to donate blood biospecimens for research if they were given an opportunity to donate immediately after a biospecimen educational session . However, although both of those studies focused on engaging the general community and required participants to attend an in‐depth (45‐60 minutes) biospecimen educational seminar before donating, our approach included engaging both patients with cancer and the general community and did not require participants to attend an in‐depth educational session on biospecimens.…”

Ethnic disparity in primary cutaneous CD30+ T‐cell lymphoproliferative disorders: an analysis of 1496 cases from the US National Cancer database

“…Establishment of prospective multi‐ethnic cohorts with adequate patient outreach is critical to understanding the diversity of outcomes in such populations (Anderson et al , ). In addition, the establishment of multi‐ethnic cohort studies with sufficient availability of biospecimens for genetic and other molecular studies is needed to identify candidate biomarkers or therapeutic targets, the applicability of which may differ among racial and ethnic groups (Rodriguez et al , ). Therefore, biomarker studies should be adequately powered to identify high‐risk signatures in these groups.…”