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. Author manuscript; available in PMC: 2022 Aug 15.
Published in final edited form as: Int Q Community Health Educ. 2020 Jul 14;41(3):315–323. doi: 10.1177/0272684X20942071

Community stakeholder perspectives on introducing HPV vaccination and biobanking evidence-based programs within medically underserved communities: A community engaged approach

Kayoll V Galbraith-Gyan 1,2, Shoba Ramanadhan 3, Kasisomayajula Viswanath 4,5
PMCID: PMC9376934  NIHMSID: NIHMS1820826  PMID: 32664800

Abstract

Purpose:

We explored the perspectives of program coordinators and community leaders from Community-based organizations (CBOs) and Faith-based organizations (FBOs) to determine how information on HPV vaccination and biobanking is understood and supported within medically underserved communities and identify strategies for introducing evidence-based programs (EBPs) on HPV vaccination and biobanking within underserved communities.

Methods:

The EPIS framework guided discussions in four focus groups with program coordinators (n=27) and one-on-one interviews with community leaders (n=15) from CBOs and FBOs.

Results:

Participants reported that community members were aware of HPV vaccination but did not know of the link between HPV infection and cancers. Awareness for biobanking was low. HPV vaccination and biobanking were not priority health concerns among community members due to other health issues. However, HPV vaccination and biobanking were considered sensitive health topics. For HPV vaccination, it was due to concerns that HPV vaccination promoted sex among adolescents, while for biobanking, it was due to historical abuses of people of color by the medical community. Participants reported that program coordinators’ awareness of HPV vaccination and biobanking depended on their organizations’ mission. Neither was considered a priority health concern due to lack of funding. Few EBPs were available on HPV vaccination and biobanking. Recommendations on culturally-appropriate strategies for engaging community members on HPV vaccination and biobanking EBPs are discussed.

Conclusion:

Given the promise of HPV vaccination and the Precision Medicine Initiative to reduce cancer disparities, findings elucidate factors to be considered when implementing EBPs on HPV vaccination and biobanking into medically underserved communities.

Keywords: HPV vaccination, biobanking, evidence-based programs, community-engagement, precision medicine

Introduction

There are a number of efforts to address cancer disparities. Two examples are the human papillomavirus (HPV) vaccine and the Precision Medicine Initiative. The HPV vaccine prevents infection with HPV, the most common sexually transmitted infection, leading to the development of six types of cancers (cervical, vaginal, vulvar, anal, penile and oropharyngeal) in men and women (Saraiya et al., 2015; Walboomers et al., 1999). The Precision Medicine Initiative focuses on increasing the participation of underrepresented minorities in donating biological specimen for research (biobanking) (NIH, 2015). A biobank is a biorepository that accepts, processes, stores and distributes biological specimens (tissue samples, tumor cells, DNA, and blood) and associated data for use in research and treatments for diseases (De Souza & Greenspan, 2013). The goal of precision medicine research is to use these donated biological specimens to develop and identify treatments for diseases that are targeted to the genetic make-up of specific patients (NLM, 2018). Through the use of biological specimens that target Black and Hispanic women, researchers are able to study genetic changes that can increase risk factors for cervical cancer and develop safe and effective cancer treatment options (Mayo Clinic, 2019). However, the majority of biological specimens currently stored in biobanks and used in clinical trials are from individuals of white European ancestry (Cohn, Husamudeen, Larson, & Williams, 2015). This limited diversity in biological specimens limits the benefits of innovative cancer therapies among racial and ethnic minorities and medically underserved populations, which can inadvertently exacerbate cancer disparities (Smedley & Haynes, 1999).

In order for racial and ethnic minorities to benefit from HPV vaccination and the Precision Medicine Initiative, there needs to be dissemination of accurate information and support for these two strategies among underrepresented communities. One way to disseminate accurate information and build community support is through the promotion of research findings and evidence-based programs (EBP) into routine practice within health and community settings (Eccles & Mittman, 2006). Since EBPs are proven and tested programs more likely to produce positive effects and address intended public health problems (Brownson, Baker, Leet, Gillespie, & True, 2011), examining the best ways community organizations can successfully conduct EBPs within medically underserved communities may help to ensure equitable distribution of resources and dissemination of accurate cancer information to people who otherwise may be overlooked by the medical system.

Hence, the purpose of this research study was to explore the perspectives of program coordinators and community leaders from Community-Based Organizations (CBOs) and Faith-Based Organizations (FBOs) to determine how information on HPV vaccination and biobanking would be understood and supported within medically underserved communities. We also explored program coordinators and community leaders’ perspectives on culturally appropriate strategies for introducing EBPs on HPV vaccination and biobanking into medically underserved communities. The following research questions guided this study: 1) What are community members and program coordinators’ level of awareness and support for HPV vaccination and biobanking?; 2) Would community members and program coordinators from CBOs or FBOs consider HPV vaccination and biobanking as priority health concerns?; 3) Would community members and program coordinators from your CBOs or FBOs consider HPV vaccination and biobanking as sensitive health topics?; 4) Are program coordinators from your CBOs and FBOs aware of EBPs and resources available on HPV vaccination and biobanking?; and, 5) What strategies would be appropriate for implementing EBPs on HPV vaccination and biobanking into underserved communities?

Conceptual framework

The Exploration, Preparation, Implementation, and Sustainment (EPIS) Framework (Aarons, Hurlburt, & Horwitz, 2011) identifies four key phases for EBPs to be successfully implemented within various contexts. The first phase of this framework, the Exploration phase, was used to guide this study. Within the Exploration phase, stakeholders consider the emergent and existing health needs of the community and identify best EBPs that may fit their community members and community context. With this in mind, this study explored the perspectives of community leaders and program coordinators from CBOs and FBOs to identify how information on HPV vaccination and biobanking EBPs would be understood and supported within medically underserved communities.

Method

This formative research study was conducted by the Outreach Core of a U54 Partnership between the Dana-Farber/Harvard Cancer Center and the University of Massachusetts, Boston. Data for this study came from a larger study with the purpose of building capacity to promote EBP usage in CBOs and FBOs. A Community Based Participatory Research approach (Wallerstein & Duran, 2006) guided this study’s partnerships with the U54 Community Advisory Board (CAB). The U54 advisory board included five members with expertise in social justice and community health and represent the City of Lawrence Mayor’s Health Task Force, the City of Lawrence Community Development Office, Greater Love Tabernacle, Health Resources in Action, and the Brazilian Worker Center. This group was convened to ensure that the project served the needs of the Black community in Boston, the Latino community in Lawrence and the Brazilian community in Greater Boston. All study procedures and documents were approved by the Institutional Review Board of the Harvard T.H. Chan School of Public Health.

Participants and data collection:

Researchers partnered with members of the CAB to identify and recruit eligible participants. Eligible participants were adults conducting health programs serving one or more of our partner communities (program coordinators), and leaders of community organizations with expertise regarding health programming in CBOs or FBOs serving one or more of our partner communities (community leaders). The primary function of program coordinators is to ensure the implementation and success of programs. In contrast, the primary function of community leaders is to determine the vision and strategic plan of the organization and to organize staff members to execute that plan. Therefore, we sought to examine both perspectives.

A trained qualitative researcher conducted focus group discussions in accessible community locations in Boston and Lawrence, MA, and one-on-interviews via phone. Focus group discussions were utilized with program coordinators because of its strength in stimulating rich discussions and providing opportunities for program coordinators to share and make comparisons on their experiences working in medically underserved communities (Green, 2018). One-one-one interviews via phone were utilized with community leaders based on participant preference and were expected to be appropriate as discussions focused on non-sensitive topics in which leaders customarily shared their opinions openly. Through partnership with the CAB, program coordinators and community leaders were recruited from different coalitions and organizations represented within the CAB. Program coordinators were recruited through flyers, email announcements, and word of mouth while community leaders were members of the CAB who then nominated other participants within their social networks. One one-on-one interview was conducted in Spanish by a trained Spanish speaking interviewer while the other 14 were conducted in English. All focus group discussions and interviews lasted one-hour and data was collected between July and November 2017.

A semi-structured interview guide facilitated focus group discussions and one-on-one interviews. Examples of interview questions used to explore how information on HPV vaccination and biobanking is understood and supported among within medically underserved communities included: 1) What do you think is the level of awareness and support for HPV vaccination and biobanking among community members and program coordinators?; 2) Do you think HPV vaccination is perceived as a priority health concern among community members and program coordinators?; and, 3) Are program coordinators from your CBO and FBO aware of programs and resources available on HPV vaccination and biobanking? Are they evidence-based? As interviews continued, probing questions were asked to contextualize responses and to follow analytic lines.

Data analysis

Interviews were audiotaped, transcribed verbatim, and checked for accuracy. Data were de-identified and uploaded to NVivo 11, an ethnographic data management software program, for the data analysis process (QSR, 2016). An interdisciplinary team of three doctoral-level researchers in the fields of sociology, nursing / health systems, and implementation science analyzed and summarized study data. A multi-stage coding process, which included prefigured and emergent codes, was used for analysis (Creswell & Clark, 2011). At each stage of the coding process, two investigators independently coded each transcript and later met to compare codes and to address any discrepancies between coders. Initial coding began with prefigured codes derived from questions in the interview guides. Subsequent rounds of coding were more inductive to allow themes from the data to emerge (Pope, Ziebland, & Mays, 2000). We also examined relationships among themes within and across cases to understand how perceptions of HPV vaccination and biobanking were similar and different based on the type of organization program coordinators and community leaders represented (CBOs vs FBOs) (Green, 2018).

Results

Four focus groups were conducted with a total of 27 program coordinators and 15 one-on-one interviews were conducted with community leaders (referred to as participants) (Table 1). The following sections present their perspective of factors that influence community members’ and program coordinators’ understanding and support of HPV vaccination and biobanking EBPs within medically underserved communities. The final section presents culturally-appropriate strategies for engaging underserved communities on HPV vaccination and biobanking programs.

Table 1.

Program coordinator and community leader characteristics (N=42)

Participant Characteristics Program Coordinators n = 27 Community Leaders n = 15
   Type of Organization
   - Faith-based Organization 9 (34%) 5 (30%)
   - Community Based Organization 18 (66%) 10 (70%)
   Race/ethnicity
   - Non-Hispanic white 2 (7.5%) 4 (27%)
   - Non- Hispanic Black 6 (22%) 4 (27%)
   - Hispanic 17 (63%) 4 (27%)
   - Brazilian 2 (7.5%) 3 (20%)
   Community Affiliation
   - Greater Lawrence 9 (34%) 6 (40%)
   - Greater Boston 18 (66%) 9 (60%)
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Notes. Percentage may exceed 100% due to rounding.

HPV vaccination

Awareness of HPV vaccination

Among community members.

A majority of participants from CBOs and FBOs reported that their community members were aware of the HPV vaccine. This awareness came from their interactions with healthcare providers in clinic settings, the news media (television and magazines), from the type of work they did, and from personal experiences with HPV vaccination campaigns in their native countries of the Caribbean and South America. However, participants also identified a need for more education on HPV due to gaps in knowledge on HPV causing cancers and genital warts. One community leader said the following:

I think people have heard about it because it is so common, and they’ve heard the term and the vaccine. What I think is missing is people don’t realize what a direct correlation that has to cervical and other forms of genital cancer– people just don’t understand that link. - Interview #9, CBO

Participants from CBOs and FBOs also identified subgroups of people with particularly low awareness of HPV vaccination. These groups included Latinos, Asians, Indians, new immigrants, older adults, youths and FBOs. One community leader shared her experience working within racially diverse communities:

Latinos, Asians. Especially Asians and Indians… I see them so insulated. I don’t think they are getting any of the education. I’m telling you as an outreach worker. They’re always busy and won’t have time even for an annual physical sometimes. – Interview #3, FBO

Among program coordinators.

Participants were unsure of the level of awareness on HPV vaccination among program coordinators within their CBOs and FBOs. This was due to HPV vaccination often being outside of the scope of their work or organization. One community leader working in a social justice organization said:

This is kind of outside of us, but I would expect it’s – if they’re already doing work on things like women and men’s health, mammography, then it’s there. But that I’m not sure. - Interview #10, CBO

HPV as a priority health concern.

Among community members.

A majority of participants reported that HPV vaccination was not a priority health concern among the community members they served. The major hindrance to HPV vaccination being considered a priority health concern was the cultural stigma that surrounded topics of sexuality and adolescents among community members of color. Community members held misconceptions that HPV vaccination was an unspoken permission for adolescents to engage in sexual activity. One community leader said:

… people feel like this [vaccine] is an unspoken permission for their children to be sexually active. I mean, we know that’s not the case…But because it [HPV vaccination] starts so young, some people have reservations. -Interview #6, CBO

Other factors reported as hindering HPV vaccination from being perceived as a priority health concern were skepticism towards vaccines in general, community members having other types of health concerns such as diabetes, opioid addiction and mental health, and a lack of information on the importance of HPV vaccination.

Among program coordinators.

A majority of participants reported that although HPV vaccination was an important health concern, HPV vaccination was not a priority health concern within their organization. This was due to a lack of funding and reimbursement from insurance companies. One community leader discussed how lack of funding prevented staff from conducting programs on HPV vaccination within their community:

It’s a priority [but] it’s not a priority right now because we don’t have funds to implement it, but it definitely is a need. I wish we could really implement and add HPV in our range of screening, and prevention programs. The only thing that stops us is we don’t have funds to do this. - Interview #12, CBO

HPV vaccination as a sensitive health topic

Among community members.

Participants from CBOs and FBOs agreed that HPV vaccination would be perceived as a sensitive health topic among community members. The recurring theme for this sensitivity was the stigma of sex that surrounded HPV vaccination. Parents and first-generation immigrants to the US were identified as groups that may be particularly more sensitive to the topic of sex, which may hinder their support of HPV vaccination, while youths were perceived as being more open to the information. This cultural stigma perpetuated the following concerns about HPV vaccination among parents: a) HPV vaccination perceived among youths as permission for sexual activity or promiscuity; b) sex was considered taboo and not a topic for discussion with adolescents; c) HPV vaccination considered a difficult topic among FBOs; and, d) the young age in which a STI vaccine is recommended. As one community leader reported, community members may not be specifically against the HPV vaccine itself, but instead were against the sexual stigma they perceived surrounded vaccination:

I think you also get into this issue of vaccine… and the misinformation about vaccines. – and you’re also dealing with a parent and young people getting that. It’s a little bit more complex. So, the issue isn’t even about the vaccine. It’s those underlying – my daughter doesn’t need it because she’s not sexually active- Interview #8, CBO

Among program coordinators.

A majority of participants from CBOs and FBOs did not perceive HPV vaccination as a sensitive health topic among program coordinators within their organizations. This was due to program coordinators using the approach of framing conversations on HPV vaccination as cancer prevention. One community leader shared her point of view:

If you approach it from a standpoint of sexual health, that might be a little bit harder to get people to discuss. If you approach it more from a sense of overall wellness and cancer prevention, then you’re likely gonna have a lot more of a positive outcome… So– you’re tripping a fine line when you’re talking about HPV and sexual health. - Interview #2, FBO

Still, among a minority of participants from CBOs and FBOs, issues of sensitivity were present. The major themes discussed surrounded the young age of HPV vaccination, religious beliefs, sex, and the recognition of sensitivity among community members.

Available EBPs on HPV vaccination

A majority of participants from CBOs and FBOs did not perceive program coordinators within their organization being aware of available EBPs on HPV vaccination. They reported that when information on HPV vaccination was shared with community members, HPV vaccination was not the primary focus of those programs. Instead, HPV vaccination was linked with other topics such as cervical cancer and STIs prevention, or not discussed at all. When asked whether their organization conducts programs on HPV specifically, one community leader responded:

Briefly we mention HPV through our presentation. We have the most accurate and updated information through the Department of Public Health. But I think that we need more. We need to have more training. -Interview #3, FBO

School-based health centers were discussed as venues for conducting programs on HPV vaccination. However, participants reported difficulties working with the school system to deliver HPV vaccine educational programs. Overall, participants reported a need for more programs and training on delivering HPV vaccination EBPs.

Biobanking

Awareness of biobanking.

Among community members.

Participants from CBOs and FBOs reported a lack of awareness on biobanking among community members. Awareness was characterized as being completely nonexistent or very low on what biobanking was and its importance.

Among program coordinators.

Participants from CBOs and FBOs reported that awareness of biobanking was low among program coordinators within their organization. Awareness was based on the type of sector they represented and the mission of their organization. When asked if they were aware of biobanking, several program coordinators shook their heads and said, “No, no. I’ve never heard of it.”- FG #2, CBO.

Biobanking as a priority health concern.

Among community members.

A majority of participants reported that biobanking was not a priority health concern among their community members. Factors described for why biobanking was not perceived as a priority health concern were perceptions that biobanking was too expensive and a practice only for the wealthy, and that biobanking was too far removed for community members to view as important. Once community leaders reported that since biobanking was perceived as a practice far removed from community members, there was no immediate benefit to the person by participating:

People respond to something that’s affecting them now. The concept that there’s not enough sort of body fluid tissue in a repository that’s used for research that one day might inform – that feels so removed from the person that they’re not going to see this as important. – Interview #9, CBO

Among program coordinators.

A majority of participants reported that biobanking was not perceived as a priority for their organization since biobanking was outside of their organization’s mission and a topic meant for the medical community. One community leader said the following: It’s [biobanking] not that connected to our mission. It really is not healthcare, so it’s not something we’ve thought a lot about. - Interview #1, CBO.

Biobanking as a sensitive health topic

Among community members.

A majority of participants from CBOs and FBOs reported that biobanking would be perceived as a sensitive health topic among community members. Three salient themes emerged as the cause of this sensitivity. The first theme was historical issues of maltreatment and manipulation of black and brown bodies by the scientific community, as discussed by one community leader:

[There’s] already a preconceived notion [by] most of the community about health professionals and research- we’re harvesting, body parts… So, people of color may be resistant to doing anything like that only because of the historical nature some of these ethnic biobanking were done in the black community… they immediately think of things like Henrietta Lacks, where John Hopkins harvested her cells without her family’s consent. There is a need to do it. I completely agree. But there are those in the community who would say, nope, we can’t do that, nope. Interview#2, FBO

The second theme was concern about the current political climate for racial and ethnic minorities and immigrants in the US. One community leader said: I mean, we’re still dealing with power issues between folks who are undocumented, [and] documented at health centers. So, I mean, I think there could be some of that [sensitivity] -Interview #10, CBO.

Finally, the third theme was biobanking being perceived among community members as a practice disconnected from their social and cultural norms. One community leader said: Cultural differences weigh into the idea of giving body tissue fluids for research. It feels like it can be invasive for the purpose of someone else that’s not really connected. -Interview #9, CBO

Among program coordinators.

Participants reported that biobanking was perceived as a sensitive health topic among program coordinators within their organization. One program coordinator said: ‘Oh, I’ve heard of it and I’m like oh, girl, don’t do that.’ When asked what type of things come to mind about biobanking, this program coordinator said:

Henrietta Lacks. Like in black and brown communities, our tissues and our bodies have been used for scientific research without our consent. So, when people ask me about it, I share that. Though I see the other side of that, that is the reality. FG #2, CBO

Available EBPs on biobanking.

A majority of participants from CBOs and FBOs were not aware of available EBPs on biobanking. Among FBOs in particular, participants reported this lack of awareness being due to an overall lack of awareness of what biobanking is and the perception that churches were not the ideal place to hold programs. One community leader said:

We have not done anything with biobanking mainly because, for us, as a church, we’re not set up to do something like that. You’re talking about specimens… labs… tissue collection. We’re not really set up for anything like that. – Interview #2, FBO

Culturally appropriate strategies for engaging underserved communities on HPV vaccination and biobanking programs.

Participants from CBOs and FBOs recommended culturally appropriate strategies for engaging medically underserved communities on HPV vaccination and biobanking EBPs (Figure 1). One recommendation was to provide accurate information to community members in simple and clear fashion and highlighting the following content: 1) the purpose and potential health benefits to their self, family and community at large, 2) acknowledge the challenging history of research in communities of color, and, 3) explain how their information will be kept private without future repercussions. A second recommendation was to customize the information of the audience. They suggested 1) being strategic in how information is framed, 2) being mindful of the language used in discussions based on the type of audience being engaged, and 3) tailor information to be specific to each community by including data relevant to that community or demographic group. A final recommendation was to develop partnerships with respected community members and organizations (i.e. churches, church leadership, community health centers) and later leverage those relationships to engage community members on discussions of sensitive health topics.

Figure 1.

Figure 1.

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Culturally appropriate strategies recommended by program coordinators and community leaders for engaging underserved communities on HPV vaccination and biobanking EBPs.

Discussion

The purpose of this study was to examine program coordinators and community leaders from CBOs and FBOs on their perspective of community members related to awareness, priority health concerns, sensitivities towards HPV vaccination and biobanking programs, and available EBPs. We also examined culturally appropriate strategies for introducing HPV vaccination and biobanking programs into medically underserved communities in the context of community members’ sensitivities towards such topics. Findings from this study highlight important factors to be considered when engaging communities of color on emergent health topics, such as HPV vaccination and biobanking.

One important finding from this study was that knowledge gaps persist among community members and program coordinators on HPV vaccination and biobanking. This finding is consist with previous literature (Tham et al., 2017), and may signal a need for further capacity-building trainings for practitioners on EBPs adaptation, implementation and dissemination in culturally meaningful ways. The ability of program coordinators to analyze and interpret scientific evidence is pertinent to new medical technologies and programs being successfully disseminated and implemented into practice and community settings (Brownson, Fielding, & Green, 2018). Previous studies that trained community volunteers/ promotoras and public-health-workers to deliver educational interventions in community settings highlight the positive effects on community members’ knowledge levels and HPV vaccination acceptance (Choi, Oketch, Adewumi, Bukusi, & Huchko, 2018; Mosavel, Barker, Gardiner, & Siminoff, 2019). Findings from this study adds to this body of literature by identifying further knowledge gaps and misconceptions among underserved communities and the program coordinators tasked with disseminating health information. Findings also support further training to address such gaps as evidence shows that increasing awareness and knowledge on the benefits of new medical approaches among community stakeholders can increase community buy-in and support for EBPs (Esmail, Hanson, Holroyd-Leduc, Niven, & Clement, 2018; van Bodegom-Vos, Davidoff, & Marang-van de Mheen, 2017).

A second important finding was participants reporting that neither HPV vaccination or biobanking was considered a priority health concern among community members. Numerous public health initiatives have brought HPV vaccination and biobanking to the forefront of health promotion. For HPV vaccination, numerous media campaigns and programs urging parents to HPV vaccinate their children have been developed since the vaccine was first recommended in 2007 (CDC, 2019). For biobanking, new attention from the Precision Medicine Initiative has herald renewed attention and push for racial and ethnic minorities to increase participation in biobanking, a longstanding practice historically dominated by white Europeans (Cohn, Hamilton, Larson, & Williams, 2017). While these campaigns have energized those in the public health field, within communities, our findings show that HPV vaccination and biobanking are still not considered priority health concerns amongst the very same audience these initiatives are targeted towards. More work is needed to bring HPV vaccination and biobanking in particular, as a priority among community members and organizations.

A final key finding from this study was that HPV vaccination and biobanking was perceived as sensitive health topics due to issues of mistrust and misconceptions, which discouraged community members and program coordinators from fully supporting these initiatives. Misconceptions surrounding HPV vaccination were linked to concerns vaccination promoted promiscuity among youths (Galbraith-Gyan et al., 2019a, 2019b; Lee et al., 2019). For biobanking, knowledge of the historical abuses of people of color, such as Henrietta Lacks, by the medical community remain in the minds of communities of color when engaging in research, and adds to the numerous barriers contributing to racial and ethnic minorities lack of support for biobanking (Kraft et al., 2018). Regardless of these factors, communities of color do have favorable views of research yet few are being engaged to participate (Jones, Vyhlidal, Bradley-Ewing, Sherman, & Goggin, 2017). Our findings identify specific factors important in recruiting communities of color to participate in research.

Limitations

The findings of this study should be considered within the context of certain limitations. This study included a sample of participants from CBOs and FBOs in the Greater Boston area so findings may not generalize to CBOs and FBOs serving other communities. Secondly, while the term FBOs was used throughout this study, participants were members of Christian churches and not members of other faiths so findings may not extend to other faith-based communities.

Implications for practice

Implementation science plays a central role in disseminating new evidence and best practices from clinical settings to community settings in targeted ways. For HPV vaccination and biobanking, this function is important in addressing cancer disparities among racial and ethnic minorities and those from low socioeconomic populations. Much of the EBPs for HPV vaccination promotion are targeted towards clinical settings, with few EBPs targeted towards communities (NCI, 2018). Similarly, biobanking research is primarily housed in academic and research institutions (NCI, 2019). As the goal of the All of Us Research Program is to engage communities that have historically been left out of biobanking research, understanding culturally appropriate and practical strategies for disseminating information on biobanking in ways that communities can understand and accept is essential (NIH, 2019). By using the EPIS framework as a guide, researchers can examine the characteristics and needs of communities and organizations and examine strategies for building partnerships with stakeholders pertinent to successful implementation of EBPs (Ramanadhan et al., 2018).

Participants recommended using culturally appropriate strategies to be utilized when engaging medically underserved populations on HPV vaccination and biobanking. These recommended strategies are not prescriptive for every population; however, they do provide a guiding framework for engaging medically underserved populations on potentially sensitive topics. As racial and ethnic minorities continue to experience disparate cancer burdens, utilizing culturally appropriate strategies to promote partnerships with trusted CBOs and FBOs is vital in promoting community members’ acceptance, dispelling misconceptions and promoting participation in emergent cancer preventive initiatives like HPV vaccination and biobanking. Findings provide researchers with first-hand insight into challenges and opportunities to intervene when engaging underserved communities on HPV vaccination and biobanking EBP.

Acknowledgements:

This work was funded by the National Cancer Institute (U54CA156732, PIs: Adán Colon-Carmona, PhD, UMass Boston; Jill Macoska, PhD, UMass Boston; Gregory Abel, MD, MPH, DF/HCC; and K.”Vish” Viswanath, PhD, DF/HCC) and was conducted in collaboration with the U54 Outreach Core Community Advisory Board. Members include Vilma Martínez-Dominguez, BS of the Office of Planning & Development, City of Lawrence; Elecia Miller, BS of the City of Lawrence Mayor’s Health Task Force; Charlotte Rackard-James of Greater Love Tabernacle; Jamiah Tappin, MSW of the Boston Alliance for Community Health; and Natalicia Tracy, PhD of The Brazilian Worker Center.

We would also like to acknowledge the U54 Outreach Core Members (as of Dec 2018): Shoba Ramanadhan, ScD, MPH, Tiffany Donaldson, PhD, Eduardo Siqueira, ScD, MD, Kayoll Galbraith Gyan, PhD, RN, Doris Sempasa, MSc, Sara Minsky, MPH, Carmenza Bruff, BS, Ali Foti, MPH, and K. “Vish” Viswanath, PhD.

This project is solely the responsibility of the authors and do not necessarily represent the official views of the NIH.

Funding:

This work was supported by the National Cancer Institute U54CA156732 grant, PIs: Adán Colon-Carmona, Jill Macoska, Gregory Abel, Kasisomayajula Viswanath; and National Institute Health grant no. 3R25CA05771.

Footnotes

Conflict of interest: The authors declare they have no conflict of interest.

References

  1. Aarons GA, Hurlburt M, & Horwitz SM (2011). Advancing a conceptual model of evidence-based practice implementation in public service sectors. Administration and Policy in Mental Health and Mental Health Services Research, 38(1), 4–23. doi: 10.1007/s10488-010-0327-7 [DOI] [PMC free article] [PubMed] [Google Scholar]
  2. Brownson RC, Baker EA, Leet TL, Gillespie KN, & True WR (2011). Evidence-based public health. New York: Oxford University Press. [Google Scholar]
  3. Brownson RC, Fielding JE, & Green LW (2018). Building Capacity for Evidence-Based Public Health: Reconciling the Pulls of Practice and the Push of Research. Annual Review of Public Health, 39, 27–53. doi: 10.1146/annurev-publhealth-040617-014746 [DOI] [PMC free article] [PubMed] [Google Scholar]
  4. Centers for Disease Control and Prevention. (2019). Human papillomavirus. Retrieved from https://www.cdc.gov/hpv/parents/can-i-ask-you-a-question/index.html
  5. Choi Y, Oketch SY, Adewumi K, Bukusi E, & Huchko MJ (2018). A Qualitative Exploration of Women’s Experiences with a Community Health Volunteer-Led Cervical Cancer Educational Module in Migori County, Kenya. Journal of Cancer Education. doi: 10.1007/s13187-018-1437-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. Cohn EG, Hamilton N, Larson EL, & Williams JK (2017). Self-reported race and ethnicity of US biobank participants compared to the US Census. Journal of Community Genetics, 8(3), 229–238. doi: 10.1007/s12687-017-0308-6 [DOI] [PMC free article] [PubMed] [Google Scholar]
  7. Cohn EG, Husamudeen M, Larson EL, & Williams JK (2015). Increasing participation in genomic research and biobanking through community-based capacity building. Journal of Genetic Counseling, 24(3), 491–502. doi: 10.1007/s10897-014-9768-6 [DOI] [PMC free article] [PubMed] [Google Scholar]
  8. Creswell JW, & Clark VLP (2011). Designing and conducting mixed methods research (2nd ed.). Thousand Oaks, CA, US: Sage Publications, Inc. [Google Scholar]
  9. De Souza YG, & Greenspan JS (2013). Biobanking past, present and future: Responsibilities and benefits. Aids, 27(3), 303–312. doi: 10.1097/QAD.0b013e32835c1244 [DOI] [PMC free article] [PubMed] [Google Scholar]
  10. Eccles MP, & Mittman BS (2006). Welcome to Implementation Science. Implementation Science, 1(1), 1. doi: 10.1186/1748-5908-1-1 [DOI] [Google Scholar]
  11. Esmail R, Hanson H, Holroyd-Leduc J, Niven DJ, & Clement F (2018). Knowledge translation and health technology reassessment: identifying synergy. BMC Health Services Research, 18(1), 674–674. doi: 10.1186/s12913-018-3494-y [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Galbraith-Gyan KV, Lechuga J, Jenerette CM, Palmer MH, Moore AD, & Hamilton JB (2019a). African-American parents’ and daughters’ beliefs about HPV infection and the HPV vaccine. Public Health Nursing, 36(2), 134–143. doi: 10.1111/phn.12565 [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Galbraith-Gyan KV, Lechuga J, Jenerette CM, Palmer MH, Moore AD, & Hamilton JB (2019b). HPV vaccine acceptance among African-American mothers and their daughters: an inquiry grounded in culture. Ethnicity & Health, 24(3), 323–340. doi: 10.1080/13557858.2017.1332758 [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Green JT, N. (2018). Qualitative methods for health research (4th ed.). Thousand Oaks, CA: SAGE. [Google Scholar]
  15. Jones BL, Vyhlidal CA, Bradley-Ewing A, Sherman A, & Goggin K (2017). If we would only ask: How henrietta lacks continues to teach us about perceptions of research and genetic research among african americans today. Journal of Racial Ethnic Health Disparities, 4(4), 735–745. doi: 10.1007/s40615-016-0277-1 [DOI] [PubMed] [Google Scholar]
  16. Kraft SA, Cho MK, Gillespie K, Halley M, Varsava N, Ormond KE, … Soo-Jin Lee S (2018). Beyond consent: Building trusting relationships with diverse populations in precision medicine research. American Journal of Bioethics, 18(4), 3–20. doi: 10.1080/15265161.2018.1431322 [DOI] [PMC free article] [PubMed] [Google Scholar]
  17. Lee SS, Cho MK, Kraft SA, Varsava N, Gillespie K, Ormond KE, … Magnus D (2019). “I don’t want to be Henrietta Lacks”: Diverse patient perspectives on donating biospecimens for precision medicine research. Genetic Medicine, 21(1), 107–113. doi: 10.1038/s41436-018-0032-6 [DOI] [PMC free article] [PubMed] [Google Scholar]
  18. Mayo Clinic (2019). Mayo clinic biobank. Retrieved from https://www.mayo.edu/research/documents/introduction-pamphlet-16kb-pdf/DOC-10027365
  19. Mosavel M, Barker KL, Gardiner HM, & Siminoff LA (2019). Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community. Journal of Community Genetics, 10(3), 395–406. doi: 10.1007/s12687-018-0397-x [DOI] [PMC free article] [PubMed] [Google Scholar]
  20. NCI (2018). Research-tested intervention programs (RTIPS). Retrieved from https://rtips.cancer.gov/rtips/programDetails.do?programId=22620324
  21. NCI. (2019). Research tested intervention programs-HPV vaccination intervention programs. Retrieved from https://rtips.cancer.gov/rtips/topicPrograms.do?topicId=22626661&choice=default
  22. NIH (2015). Precision medicine initiative cohort program- Building a research foundation for 21st century medicine. Retrieved from https://www.nih.gov/sites/default/files/research-training/initiatives/pmi/pmi-working-group-report-20150917-2.pdf
  23. NIH. (2019). All of us research program. Retrieved from https://allofus.nih.gov/
  24. NLM (2018). What is the precision medicine initiative. Retrieved from https://ghr.nlm.nih.gov/primer/precisionmedicine/initiative
  25. Pope C, Ziebland S, & Mays N (2000). Qualitative research in health care. Analysing qualitative data. The BMJ, 320(7227), 114–116. [DOI] [PMC free article] [PubMed] [Google Scholar]
  26. QSR International Pty Ltd (2016). NVivo Qualitative Data Analysis Software Version 11. Retrieved from http://www.qsrinternational.com/what-is-nvivo
  27. Ramanadhan S, Davis MM, Armstrong R, Baquero B, Ko LK, Leng JC, … Brownson RC (2018). Participatory implementation science to increase the impact of evidence-based cancer prevention and control. Cancer, Causes & Control, 29(3), 363–369. doi: 10.1007/s10552-018-1008-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
  28. Smedley BD, & Haynes MA (1999). The unequal burden of cancer: an assessment of NIH research and programs for ethnic minorities and the medically underserved: National Academies Press. [PubMed] [Google Scholar]
  29. Tham HM, Hohl S, Copeland W, Briant KJ, Marquez-Magana L, & Thompson B (2017). Enhancing Biospecimen Knowledge Among Health Care Providers and Representatives From Community Organizations. Health Promotion & Practice, 18(5), 715–725. doi: 10.1177/1524839916641069 [DOI] [PMC free article] [PubMed] [Google Scholar]
  30. van Bodegom-Vos L, Davidoff F, & Marang-van de Mheen PJ (2017). Implementation and de-implementation: two sides of the same coin? BMJ Quality & Safety, 26(6), 495–501. doi: 10.1136/bmjqs-2016-005473 [DOI] [PubMed] [Google Scholar]
  31. Walboomers JMM, Jacobs MV, Manos MM, Bosch FX, Kummer JA, Shah KV, … Muñoz N (1999). Human papillomavirus is a necessary cause of invasive cervical cancer worldwide. The Journal of Pathology, 189(1), 12–19. doi: [DOI] [PubMed] [Google Scholar]
  32. Wallerstein NB, & Duran B (2006). Using community-based participatory research to address health disparities. Health Promotion & Practice, 7(3), 312–323. doi: 10.1177/1524839906289376 [DOI] [PubMed] [Google Scholar]

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