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. Author manuscript; available in PMC: 2022 Oct 1.
Published in final edited form as: Worldviews Evid Based Nurs. 2021 Sep 24;18(5):302–309. doi: 10.1111/wvn.12539

Use of Video Education Interventions to Increase Racial and Ethnic Diversity in Cancer Clinical Trials: A Systematic Review

Timiya S Nolan 1, Ana’ M Bell 2, Ya-Ning Chan 3, Ashley Leak Bryant 4, Jennifer S Bissram 5, Rachel Hirschey 6
PMCID: PMC8483572  NIHMSID: NIHMS1739284  PMID: 34561957

Abstract

Background:

Less than 5% of eligible adult cancer survivors participate in cancer clinical trials. Survivors identifying as Black, Indigenous, and people of color (BIPOC) are less likely to participate in clinical trials compared to those identifying as non-Hispanic White. Common barriers to BIPOC participation are lack of knowledge, lack of access, and mistrust. These barriers are all factors in the disparities observed in BIPOC cancer-related morbidity and mortality. Clinical trials need adequate BIPOC representation to garner generalizable findings that can reduce or eliminate race-based cancer disparities.

Aim:

This systematic review examined the use of video education interventions to impact BIPOC survivor participation in clinical trials.

Methods:

Web of Science, Embase, PubMed, Cochrane, PsycInfo, and CINAHL databases were queried for articles that described or tested video interventions aimed at increasing adult, BIPOC survivor clinical trial participation. Two authors independently screened articles for inclusion, appraised quality, and abstracted relevant data. All authors synthesized the data into themes through discussion and consensus.

Results:

The search yielded 2,512 articles. Seven selected articles described six distinct interventions. Though the six interventions reduced barriers to participation in clinical trials, their findings varied on Black and Hispanic survivors’ readiness to enroll and participate in trials. Four themes emerged: (1) cultural sensitivity is needed in video development and delivery; (2) video content should be aimed to educate and change attitudes about clinical trials; (3) video interventions are feasible and acceptable; and (4) video interventions affect outcomes on intention or actual enrollment.

Linking Evidence to Action:

Video interventions are well-received by BIPOC survivors and may improve representation in clinical trials. Yet, video interventions are underutilized. More studies are needed to establish best practices for video interventions aimed at diversifying clinical trial participation as widening cancer disparities and rapidly changing cancer care continue to emerge.

Keywords: clinical trials, narrative, video education interventions, BIPOC, African American, Black, Hispanic, cancer, treatment

Introduction

There have been advancements in care across the cancer continuum, resulting in extended survival and reduced mortality (Unger, Cook, Tai, & Bleyer, 2016). However, advancements have not equitably translated across racially and ethnically diverse populations. Stark gaps in cancer mortality and morbidity exist between non-Hispanic White people and Black, Indigenous, and people of color (BIPOC; National Cancer Institute, 2019). A medical system that has created factors of mistrust, poverty, lack of access to care, lack of health insurance, and low health literacy contributes to the widening disparity gap (Institute of Medicine Committee on Cancer Research Among Minorities and the Medically Underserved, 1999; Institute of Medicine Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, 2003). These factors also contribute to the underrepresentation of BIPOC in clinical trials. Clinical trials are a critical component in aiding improvement in prevention, diagnosis, and treatment of cancer across populations. Yet less than 5% of eligible adult cancer survivors participate in cancer clinical trials (Friedman & Cain, 1990; Murthy, Krumholz, & Gross, 2004). BIPOC survivors are a substantially smaller percentage of clinical trial participants (1.3% of Black and Hispanic people respectively) than non-Hispanic White cancer survivors (1.8%; Murthy et al., 2004). This is concerning in light of significant disparities in cancer-related morbidity and mortality (National Cancer Institute, 2019). Going forward, cancer clinical trials must recruit and retain racially and ethnically diverse study participants. Doing so will allow researchers to generalize and translate the knowledge gained, thus potentially leveraging outcomes to a more diverse group of survivors (Park, Weiss, & Moy, 2007). Recruiting and retaining diverse study participants requires researchers to consider diverse accrual strategies.

Lack of clinical trial diversity suggests that the traditional recruitment strategies pose challenges for diversity in accrual. Recruitment strategy success is often affected by institutional and structural barriers (e.g., access to care facility and lack of insurance coverage for study drugs), provider-level barriers (e.g., limited invitation to BIPOC survivors), or participant-level factors (e.g., beliefs about cancer, medical mistrust, cancer therapy, disease stage, and decision-making style; Morris, Rhoads, Stain, & Birkmeyer, 2010; Patel et al., 2020; Scharff et al., 2010). Other hindrances may be related to the study design (e.g., eligibility criteria and technical language used in the informed consent process; Chandra & Paul, 2003; Klabunde et al., 2011; Probstfield & Frye, 2011). While these barriers impact accrual, the most detrimental issues to accruing BIPOC survivors in clinical trials may be the lack of culturally specific language, coupled with limited cultural humility from healthcare providers and research staff (Ford et al., 2008; Mills et al., 2006; Scharff et al., 2010).

The National Cancer Institute and the American Society of Clinical Oncology Clinical Trial Symposium posits introducing tailored interventions, education tools, and reading materials to promote BIPOCs’ health literacy, communication and participation in clinical trials (Denicoff et al., 2013). Presentation and messaging around clinical trials must not only convey medical knowledge around the clinical trials, but also meet ethical mandates and demonstrate trustworthiness without overwhelming survivors (Albrecht et al., 2008). In particular, culturally tailored educational videos and reading materials have been demonstrated to meet bioethical standards while also being deemed acceptable to survivors. Therefore, such videos and reading materials are strongly recommended to increase clinical trial participation (Denicoff et al., 2013).

Video is a successful education method in academia (Brame, 2015) and cancer control (Blake et al, 2020). Research on the use of culturally tailored videos (and accompanying reading materials) is limited but has effectively increased both cancer patients’ intent to enroll and actual enrollment in cancer clinical trials (Meropol et al., 2016). To this end, educating BIPOC survivors about clinical trials using culturally tailored videos may be an effective intervention to increase intent and actual enrollment in clinical trials (Chandra & Paul, 2003; Ford et al., 2008; Institute of Medicine, 1999, 2003; Unger et al., 2016). There is a need to identify best practices and effective video interventions that increase underrepresented minority participation in clinical trials. The purpose of this systematic review was to understand the use of video education interventions to increase BIPOC survivor participation in cancer clinical trials.

Methods

This study was conducted in accordance and reported with PRISMA guidelines (Moher, Liberati, Tetzlaff, Altman, & Group, 2009) and published standards for reporting systematic reviews (Institute of Medicine, 2011).

Search Strategy

This study was a secondary analysis of a literature review described elsewhere (Hirschey, Bryant, Walker, & Nolan, 2020). This study was guided by the following PICO (i.e., patient population, intervention of interest, comparison, and outcome) question: Among BIPOC (P), how have video interventions (I) been used to impact clinical trial enrollment (O)? Computerized searches were conducted by a medical librarian in PubMed, Embase, Web of Science, CINAHL, PsycInfo and the Cochrane Library. The searches were restricted to the English language, included Medical Subject Headings (MeSH), Emtree headings (subject heading unique to Embase), and related text and keyword searches when appropriate. Searches focused on terms used to describe (a) racial/ethnic minority groups, (b) cancer survivors, and (c) video recordings.

Data Abstraction

Two researchers independently reviewed titles and abstracts to assess if identified records met the inclusion criteria. Next, full texts of articles that met the inclusion criteria were reviewed by two independent researchers (TN and RH) to confirm eligibility. Inclusion criteria consisted of (1) BIPOC study sample, (2) study sample of oncology patients, (3) inclusion of a description of developing or testing a video intervention, and (4) clinical trial participation outcomes (e.g., recruitment and enrollment in clinical trials). All study designs were permissible for inclusion and no date restrictions were applied. Exclusion criteria consisted of (1) not published in English, (2) videos in mass media campaigns, (3) telemedicine, and (4) interventions outside of the United States. Data were then abstracted by four reviewers (RH, TN, YNC, AB) into matrix tables. The study team then discussed and synthesized data to identify common themes across studies.

Quality Assessment

The National Heart, Lung and Blood Institute Study Quality Assessment Tools criteria for quantitative research (NIH National Heart, Lung and Blood Institute, n.d.) and the Joanna Briggs Institute criteria for qualitative research (Lockwood, Munn, & Porritt, 2015) were used for quality assessment of each study. Two researchers individually reviewed each article and resolved discrepancies (RH, TN).

Results

The original search yielded 2,513 non-duplicate titles and abstracts for review. Of these, sixteen full text articles were reviewed to confirm inclusion criteria. Ultimately, seven articles describing six distinct interventions met the criteria for inclusion (see Figure 1). Study quality was appraised from fair to good. The six interventions included Black or Hispanic cancer survivors from various types of cancer (the most common type being breast cancer). Sample sizes ranged from 35–200. Although the interventions reduced barriers to participation in clinical trials across all studies, the studies that reported specific metrics found variable results on readiness to enroll and actual clinical trial participation. Four common themes emerged across the video interventions: (1) cultural sensitivity application in video development and delivery; (2) video content aimed to educate and change attitudes about clinical trials; (3) video interventions are feasible and acceptable; and (4) video interventions may impact clinical trial enrollment. A summary of studies is provided in Table S1.

Figure 1.

Figure 1.

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PRISMA flow diagram.

Cultural Sensitivity Application in Video Development and Delivery

The video interventions described in the selected articles were developed and delivered with feedback from stakeholders (i.e., BIPOC cancer survivors, healthcare providers, etc.). Both Chalela, Muñoz, Gallion, Kaklamani, and Ramirez (2018) and Quinn et al. (2013) engaged stakeholders in focus groups and beta tests of videos to glean information that informed their interventions. Banda, Libin, Wang, and Swain (2012), Pelto et al. (2016), and Wells et al. (2013) had video content approved or revised by stakeholders prior to testing. Wells et al. (2013) referred to the process of culturally adapting content as “transcreation,” noting that their goal was to go beyond using the correct language of the intended audience by also aiming to meet other informational needs (e.g., health literacy and cultural relevance). Like Wells et al. (2013), Du, Mood, Gadgeel, and Simon (2009) and Pelto et al. (2016) studied BIPOC cancer survivors’ perceptions of materials adapted from the National Cancer Institute’s Cancer Clinical Trials videos. Other researchers created original videos (Banda et al., 2012; Chalela et al., 2018; Quinn et al., 2013) or studied the outcomes of existing videos (Robinson et al., 2017).

For cultural sensitivity, videos featured patient narrators that were racially and ethnically congruent with the target population along with healthcare providers and other public servants (Banda et al., 2012; Chalela et al., 2018; Pelto et al., 2016; Robinson et al., 2017). Narrators were chosen to match the language of the intended population. For example, Wells et al. (2013) and Quinn et al. (2013) supplied information in Spanish for their Hispanic participants. While Pelto et al. (2016) gave participants a choice between English or Spanish information as their participants were Hispanic or non-Hispanic White. However, the race and ethnicity of the narrators in some video content was unclear (Du et al., 2009; Quinn et al., 2013; Wells et al., 2013).

In addition to the narrator, selected articles also addressed message presentation in videos. Messaging was adapted to meet participants’ perceptions of acceptable design and tone. Quinn et al. (2013) used focus groups to provide recommendations for video improvement. The Hispanic focus group appreciated inclusion of diverse people within the video, asked for clarification around clinical trial phases, and requested that the video show how participation affects the individual, family, and life overall. In response, researchers altered the final video for the targeted population.

Interventions utilized a variety of delivery modes to communicate the culturally sensitive messages. Videos were presented in a clinical research setting (Banda et al., 2012; Chalela et al., 2018; Du et al., 2009; Pelto et al., 2016; Quinn et al., 2013; Robinson et al., 2017) or in a clinical research and home setting (Wells et al., 2013). Participants in Quinn et al. (2013) recommended that videos be available both in the clinical and home setting to allow time for reflection with their families. Wells et al. (2013) noted that 62.5% of the 17 participants within their study also viewed the intervention again at home. Three studies also employed an additional delivery strategy, i.e., clinical trial coordinators who were racially and linguistically congruent with their samples (Banda et al., 2012; Chalela et al., 2018; Robinson et al., 2017). These coordinators facilitated information delivery describing the clinical trial.

Video Content Aimed to Educate and Change Attitudes About Clinical Trials

Each intervention had the primary approach of building knowledge through educational narratives. These narratives used simple terms to describe clinical trials, urge the importance of participation, provide information relative to informed consent, and address potential barriers toward participation (Banda et al., 2012; Chalela et al., 2018; Du et al., 2009; Pelto et al., 2016; Quinn et al., 2013; Robinson et al., 2017; Wells et al., 2013). Formative work with stakeholders identified barriers to participation, which then allowed researchers to include information targeted to overcome these barriers. For example, Banda et al. (2012) applied a phased approach that identified and addressed six attitudinal barriers to clinical trial participation for Black people (e.g., distrust of medical establishment, fear of loss of rights, worry of being treated poorly). Likewise, the Hispanic participants in Quinn et al. (2013) expressed that exclusion of their families in the decision-making process was unacceptable. The researchers addressed this barrier by adding family to the decision-making process and creating the expectation that healthcare providers recommend appropriate clinical trial options. Alternatively, Chalela et al. (2018) and Pelto et al. (2016) featured the stories of individuals who had participated in research, thereby hoping to show potential participants that others from similar backgrounds had positive experiences. Du et al. (2009) included Black patient perspectives. However, it was unclear if the intervention featured Black survivors who had participated in clinical trials.

In addition to narratives, some interventions employed a multimodal approach rather than video only. Findings from Quinn et al. (2013) were used to develop an intervention that included an 8-minute video and a 12-page booklet. Wells et al. (2013) also used a video and booklet, namely the National Cancer Institute’s Spanish language Estudios clínicos: Considere todas sus opciones (Clinical Trials: Consider all your options). Lastly, Chalela et al. (2018) supplied a low-literacy booklet and patient navigator care coordination with their intervention.

Feasibility and Acceptability of Video Interventions Was Demonstrated

Several studies focused on assessing feasibility and acceptability of delivering video interventions. Feasibility was demonstrated by the ability to successfully implement the interventions in the target populations. Banda et al. (2012), Chalela et al. (2018), Pelto et al. (2016) and Wells et al. (2013) found that attitudes toward clinical trials, self-efficacy for decision making of clinical trials, and receptivity to clinical trial information from baseline to follow-up between groups did not differ. Chalela et al. (2018) found that predictors of readiness and participation within their sample of Latina patients were not consistently related to socioeconomic factors. Delivery of interventions was feasible, though the results of these pilot studies did not predict intervention efficacy.

Some interventions had positive effects on factors that may lead to clinical trial enrollment (e.g., decision readiness and barrier reduction) or actual enrollment in trials. Banda et al. (2012) reduced barriers of fear and mistrust in a diverse sample. Chalela et al. (2018) found that their video intervention was more likely to increase stage of decision readiness for participation and perceived understanding of clinical trials in comparison to a control group (p = 0.033). Pelto et al. (2016) showed positive changes in knowledge, benefits, and reduction of barriers related to participating in clinical trials. These studies highlight feasibility and utility of video interventions.

Video Interventions May Impact Clinical Trial Enrollment

Four interventions assessed actual enrollment in clinical trials. Banda et al. (2012) found that likelihood of enrollment increased from 45.4% to 79.6% (p < 0.001) in a diverse sample. Robinson et al. (2017) demonstrated that likelihood of Black survivors participating in clinical trials post-interventions improved from 52% to 66% (p<.001), noting that actual enrollment in their study was 72%. Chalela et al. (2018), Du et al. (2009), and Wells et al. (2013) applied a control condition to study endpoints. Chalela et al. (2018) found that the likelihood that a survivor would consider participating in clinical trials as a treatment option increased (p = .008), though there was no difference in actual enrollment between the intervention and control. Wells et al. (2013) found that intention to participate declined over time in the control condition (p = 0.031), while it remained positive in the intervention condition (p = 0.484). However, Du et al. (2009) found no difference between their intervention and control groups’ likelihood to enroll in clinical trials.

While it is unclear why some interventions were more effective than others, the selected articles did have clear differences in the study design and methodology. Banda et al. (2012) and Robinson et al. (2017) assessed clinical trial participation endpoints of pre-and-post video delivery in a racially congruent study coordinator’s office. Wells et al. (2013) examined endpoints of delivery in the clinical setting and at home, finding improvement in clinical trial enrollment. Du et al. (2009) conjectured that an inability to effect attitudinal factors may explain their study’s null findings. Identification of effects of mediators and fully powered randomized trials are warranted.

Discussion

Clinical trial participation diversification is an ongoing problem, particularly in cancer clinical trials. Efforts to improve diversity in clinical trial participation are needed to ensure that advancements made in cancer care are culturally and racially sensitive and equitably distributed (Unger, Vaidya, Hershman, Minasian, & Fleury, 2019). This review explored the use of video education to impact clinical trial participation and intention to participate. In relation to our findings, we suggest consideration of several factors in both the development and implementation of video during the informed consent process. There is a paucity of information on this topic. Further, video use in mixed clinical trial processes has yielded variable effectiveness on clinical trial participation (Treweek et al., 2013). Selected articles in this review show that video education may be an effective method to increase clinical trial participation and intention to participate among BIPOC cancer survivors.

One common reason some of the videos may have been acceptable to the target population is because they included narrative messages. Narratives are personal stories from similar individuals that create a sense of identity. The commonality in identities promotes the participant to trust the message and uptake the information (Hinyard & Kreuter, 2007; Kreuter et al., 2008; Shaffer & Zikmund-Fisher, 2013). Narrative video interventions have been well received and effective among Black cancer survivors, which has ultimately produced other positive outcomes (Hirschey et al., 2020). For example, among Black survivors, narrative interventions have improved pain management (Anderson et al., 2004), knowledge about cancer treatments (Cassileth, Heiberger, March, & Sutton-Smith, 1982), and information recall about breast cancer screening (McQueen et al., 2011). Black survivors liked narrative messages because the narrators “think a lot like me” and “have values like mine” (Perez et al., 2014). They also reported that videos with identifiable narrators who tell their stories are easier to understand than strictly informational videos (Perez et al., 2014). Hence, we understand that attention to cultural perspective is paramount in the design and delivery of video education for racially and ethnically diverse clinical trial participation.

This review also raised the need for researchers to acknowledge historical trauma and personal feelings about clinical trial participation among BIPOC populations. Particularly in Black community members, attitudes about research are deep-rooted in historical insults like the U.S. Syphilis Study (Scharff et al., 2010). Intervention videos must acknowledge the wrongs of past researchers. Articles in this review report that video can be used to change attitudes and educate potential participants of clinical trials. Along with the articles covered in our review, a National Institute of Health Research Program entitled “All of Us” demonstrates the ability for culturally sensitive educational materials (video, written, coordinators) to improve recruitment among BIPOC. “All of Us” provides a protocol of its recruitment strategies, including videos that are cultural sensitivity to a diverse population of Americans (Precision Medicine Initiative, 2018). The “All of Us” study also acknowledges the importance of pairing the video with trained, culturally sensitive clinical coordinators. Coordinators were noted as a benefit in this review. Further study identifying video education efficacy compared to video education with a clinical coordinator is indicated.

Though this review adds insight into the use of video education in clinical trial recruitment processes for diversification, there were weaknesses. First, studies selected for inclusion had low-level evidence. The majority of studies were observational rather than randomized controlled trials or meta-analyses, indicating that inferences drawn from this review should be cautionary. Second, most of the collective sample in this review were breast cancer patients, thus generalizability is limited to people with other cancers. Similarly, the collective sample was mostly Black, Hispanic, or Native American people, limiting generalizability to other BIPOC groups. As cultural competency and humility were chief concerns noted in video education development, considerations of other BIPOC groups are needed. Concerted efforts to understand how video education can be used to diversify clinical trial recruitment and participation are warranted. With diverse cancer clinical trial participation, there may be equitable distribution of benefit from trial outcomes.

Linking Evidence to Action

  • Advancements in cancer care have not equitably translated across racially and ethnically diverse populations in part due to the lack of diversity in cancer clinical trials. Video education may be an effective method to increase clinical trial participation and intention to participate among BIPOC cancer survivors.

  • Specifically, the design and delivery of video education interventions aimed at increasing BIPOC clinical trial participation should consider respective cultural perspectives. Narratives, including testimonials, can be interwoven with information to increase potential for intervention uptake.

  • To establish trust, historical trauma and personal feelings about clinical trial participation among BIPOC populations must be acknowledged in video education interventions. Pairing such interventions with culturally sensitive clinical coordinators may offer some benefit.

  • Cultural competency and humility considerations are chief concerns in video development for the limited BIPOC groups represented in this review. Further study is needed to understand how video education can be used to diversify clinical trial recruitment and participation.

Conclusion

Video interventions are well-received by BIPOC survivors and may improve BIPOC representation in clinical trials, yet they are underutilized. With widening cancer disparities and rapidly changing cancer care, more rigorous studies are needed to establish best practices for video interventions used to increase BIPOC participation in clinical trials.

Supplementary Material

tS1

Acknowledgments

Note: Research reported in this publication was supported by the National Institutes of Health under award numbers K08CA245208 (Nolan), R03CA245999 (Nolan), and 2T32NR007091 (Hirschey).

Contributor Information

Timiya S. Nolan, College of Nursing, The Ohio State University, and Nurse Scientist, The Ohio State University Comprehensive Cancer Center - The James.

Ana’ M. Bell, College of Education and Human Ecology, The Ohio State University.

Ya-Ning Chan, School of Nursing, University of North Carolina at Chapel Hill.

Ashley Leak Bryant, School of Nursing, University of North Carolina at Chapel Hill, and Member Lineberger Comprehensive Cancer Center, Chapel Hill, NC.

Jennifer S. Bissram, Health Sciences Library, University of North Carolina at Chapel Hill, Chapel Hill, NC.

Rachel Hirschey, School of Nursing, University of North Carolina at Chapel Hill, and Associate Member Lineberger Comprehensive Cancer Center, Chapel Hill, NC.

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