Critical Steps for Engaging Hispanics in Cancer Research: Building Capacity to Enhance Participation in Biospecimen Donation with Hispanic Communities
There is a widespread recognition that health disparities impact Hispanics collectively; however, much less is known about the disease risk and outcomes with respect to the heterogeneity of Hispanic subgroups. Community-engaged approaches and strategies to research are essential for reaching these at-risk populations and building trust among community and research partners who serve and care for Hispanics. These methods are not only useful for engaging diverse populations but also useful in elucidating and differentiating nuances within and among Hispanic subgroup characteristics and their perspectives regarding participation in biomedical research. There is a growing body of evidence supporting the use of participatory research methods in studying, developing, and implementing culturally sensitive cancer prevention interventions and strategies among diverse racial/ethnic minority populations. Much of the previous work in this area has addressed program adaptation or cultural tailoring of existing cancer educational programs and materials. However, the adoption of community engaged research approaches in translational or transdisciplinary research are less understood and may have the potential to improve inclusion and representation of Hispanics in biomedical research studies and to shed light on how to create conditions for health and health equity. This chapter describes novel applications of community-based approaches to biobanking and biospecimen research areas to highlight (1) three critical steps for engaging Hispanic communities in cancer research, (2) best practices and scientifically based strategies and considerations for enhancing community engagement in research, and (3) lessons learned.
KeywordsCommunity engagement Hispanic Biospecimens Cancer Research participation Health equity
The disproportionately lower number of certain subpopulations participating in clinical and prevention research has a significant impact on the representativeness of scientific outcomes and results in social and clinical injustices . A sequential set of community-based studies were conducted to engage diverse medically underserved populations in biospecimen donation for cancer genomic research [2, 3]. This chapter is organized around three critical steps of community engagement that are relevant to participatory research as applied to novel and formative efforts focused on biospecimen science that were used in the Hoy y Mañana (translated to Today and Tomorrow) study. Specifically, these studies developed and tested community-based interventions to identify influential factors regarding participation in biospecimen donation to a biorepository at a cancer center in upstate New York for future cancer research from a Northeast Hispanic, predominantly Puerto Rican population .
Three Critical Steps for Engaging Hispanics in Cancer Research
Community engagement is an essential component to reaching and including diverse and\or hard-to-reach populations in biomedical research with a focus on reducing health disparities and improving individual health. There are three overarching steps that can be applied when working at the community level that facilitate engaged approaches to research and enhance the relevance of research as an opportunity to build capacity and increase health equity. The following steps are not exclusive to biospecimen research studies but can be applied to a variety of public health issues and research topics targeting efforts at a community level.
Step 1: Know the Community
The first step is to know the community. Knowing the community requires an in-depth understanding of community members and stakeholders, barriers and assets, population demographics, and community context. The Community Development Model for Public Health Applications is a comprehensive model that integrates the factors essential to knowing a community as the primary unit of analysis and can be used as a framework to guide community-engaged research efforts . Additionally, Community-Based Participatory Research (CBPR) principles and methods also serve as a foundation for collaborative approaches to research that enhance and support community engagement research activities across a variety of topics and disciplines.
Involving the community at the earliest stages of the research process can better ensure acceptability and relevance to the population of interest. The Hoy y Mañana (HyM) study focused on the opportunity to build capacity with preexisting community partners around the topic of biospecimen donation for future cancer research . Capacity building is a key component of the CBPR principles that values skill building and co-learning . Community partners played an integral role in linking the pilot research project to the community and vice versa. Transparent and consistent communication was an important factor throughout the process and contributed to an effective partnership process in engaging the community and assessing feasibility to conduct community-based cancer research involving the collection of biospecimens.
Summary of formative research methods used in the Hoy y Mañana study
Gain perspective of Hispanic community leaders
Structured in-person key informant interviews
Lack of awareness
How are specimens used?
Never asked to donate
These findings informed focus group topics with broader community
Gain perspective of biorepository staff at the cancer center
Structured in-person interviews
Identified staffing needs to ensure community competence
Informed protocol for collecting samples in the community to maintain scientific rigor while enhancing community access to participation in biospecimen donation
Identify barriers and assets in recruiting diverse populations to biospecimen donation (e.g., Hispanic community)
Focus groups (n = 4) with participants from the community
Lack of awareness
Interest in research opportunities
Need for translated materials and consent process
Disseminated results to community advisors and informed the design of a community-based pilot
Step 2: Know the Goal of Engagement Activities
Community-engaged research efforts often require understanding and commitment to an iterative process; however, the goal of engagement activities should be transparent and mutually agreed upon prior to research implementation to ensure acceptance and commitment to the process. In the HyM study, the objective of this first step was to better understand the community’s awareness, knowledge, attitudes, and interest in biospecimen donation for cancer research. The results from the formative research were shared with stakeholders including the Community Advisory Board (CAB) members during a partner education component of the study to finalize concepts to be covered in the biospecimen science education program. Dissemination activities require thoughtful planning, because there may be different audiences (e.g., CAB and community members) and time points within the research process that require their own feedback loops for sharing information as it is developed and analyzed. Likewise, how information is developed and analyzed requires consideration of the goal and transparency in why and how specific partners are included throughout the research process.
Step 3: Design Activities Using Best Practice Strategies
As with any type of research, there is an emphasis on scientific rigor and the process applied to draw conclusions from study findings. Community-based research will often vary with respect to the level of community partner involvement, and this is unique to each collaboration; however, in studies that apply CBPR methodology, there are accepted and best practice strategies that can be used to ensure scientific rigor while addressing the issues most relevant to the community . Best practice strategies should be applied at all phases of the research process and considered as an opportunity to further integrate community partners as citizen scientists who are the rightful experts with respect to the communities they live in.
Application of best practices in the Hoy y Mañana (HyM) study
HyM study component
Best practice strategies applied
Community-Based Participatory Research (CBPR) Approach
Informed by CBPR principles
Culture and literacy
All program materials were translated to Spanish to meet community language needs and preferences
An Audience Response System was used to engage the community audience in the educational presentation and facilitate an interactive survey process
Evaluation and refinement
Revisions were made after multiple pilot programs
Spanish translation and verification process
Process measures were collected on efficacy of the community pilot including implementation of tools and the mobile unit
Hispanic newspapers and radio
Discussion and Lessons Learned
Hispanics represent a significant proportion of the diverse minority populations that make up the United States and are underrepresented in biomedical research studies and even more so in biospecimen banks [8, 9]. A growing number of cancer research studies include the collection of biospecimens as part of the research participation process. It is important that this rapidly evolving field of cancer research as it relates to precision medicine and/or immunotherapy not contribute to further gaps and disparities across the cancer care and research spectrum. The HyM study sought to engage and partner with an underserved Hispanic community to (1) understand their awareness and interest in biospecimen science (2) develop a community-based education program to increase awareness and facilitate informed decision-making with regard to biospecimen donation and (3) test the feasibility of community-engaged culturally appropriate approaches in recruiting diverse and underserved community participants to biospecimen donation for cancer research using a mobile lab unit for onsite collection and processing of biospecimen donations.
Most Hispanic groups do not have a historical context of mistrust with regard to the medical community. Other studies including Hispanics have also found that lack of awareness regarding biospecimen science and/or not having been asked to participate in cancer research are the primary reasons cited by this population regarding their lack of participation in biospecimen donation [2, 4, 9]. Cancer research opportunities inclusive of Hispanics are critical to understand the molecular differences in cancer cells compared to populations that have been better studied and represented in research . Community-engaged studies have shown that several Hispanic groups indicate a willingness to donate biospecimens for cancer research and also support the use of trained non-medical staff to obtain consent for the biospecimen request [2, 11]. Engaging Hispanic communities in a culturally appropriate manner at the very beginning is necessary and essential to the collection of biospecimens for cancer research. This research requires a commitment to collaboration across disciplines and values community engagement as part of the research process.
- 6.Parker EA, Robins T, Israel B, Brakefield-Caldwell W, Edgren K, Wilkins D, et al. Methods in community-based participatory research for health. San Francisco: Jossey-Bass; 2005.Google Scholar
- 8.Lopez DS, Fernandez ME, Cano MA, Mendez C, Tsai CL, Wetter DW, et al. Association of acculturation, nativity, and years living in the United States with biobanking among individuals of Mexican descent. Cancer Epidemiol Biomarkers Prev. 2014;23(3):402–8. https://doi.org/10.1158/1055-9965.Epi-13-0747.CrossRefPubMedPubMedCentralGoogle Scholar
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