FormalPara Key Points

  • Training in cultural competency can improve clinical researchers’ skills in interacting with study participants.

  • A culturally competent workforce has the tools to address barriers in the recruitment and retention of clinical trial participants from health disparate populations.

  • Existing cultural awareness training designed for healthcare providers can be adapted to meet the needs of clinical researchers.

Minority groups experience significant health disparities in the USA, including disparities in cancer [1,2,3,4]. Cancer disparities in some smaller populations, such as Native Hawaiians and Pacific Islanders (NHPI), may be masked by being aggregated with larger groups—such as grouping NHPI with Asians (AANHPI or API) [2]. Fortunately, detailed disaggregated NHPI cancer incidence and mortality data can be found in academic and government data sets from the US State of Hawaiʻi. These data indicate Native Hawaiians suffer from the highest cancer mortality rates compared to the other four major racial groups in Hawai‘i: Chinese, Filipino, Japanese, and Whites [4].

New innovations in cancer therapy depend on clinical trials for ascertaining effectiveness. However, clinical trials targeting minority groups face challenges in recruitment [5, 6]. Native Hawaiians, who experience large cancer disparities, have been reluctant to engage in clinical trials [5,6,7]. The reasons for this may likely be similar to those experienced by other Indigenous communities, such as a lack of trust and cultural differences in communication styles [8, 9]. Cultural competency training is important for the clinical research team, especially because it can address differing communication styles and trust issues. Training the clinical research team to gain a greater understanding of social–cultural factors, barriers to the involvement of minority populations in clinical trials, and the role of community-based facilitators could enhance recruitment of Indigenous peoples in clinical trials and research [10].

Background for Training Curriculum

The University of Hawai‘i Cancer Center (UHCC) Minority Underserved NCORP (National Cancer Institute’s Community Oncology Research Program) had funding to provide cultural competency (CC) training to nurses, clinical research coordinators, and other research staff. In 2017, the UHCC approached the Department of Native Hawaiian Health (DNHH) at the John A. Burns School of Medicine (JABSOM) to assist with this training. The Department’s interdisciplinary C3 (cultural competency curriculum development) team, consisting mostly of Native Hawaiians, has been designing CC curricula for medical students and medical residents since 2006 [11]. CC training is defined as “a set of congruent behaviors, attitudes, and policies that come together in a system, agency, or among professionals” that enables effective work in cross-cultural situations [12]. JABSOM C3 team training is broader and tries to focus on core elements needed to improve Native Hawaiian health and patient care. Examples include being able to respectfully interact with, understand, and advocate for people from cultures different from their own; becoming self-aware (how personal values and biases influence care); and being aware of the impacts of power differentials, racism and bias, and social and cultural determinants of health, as well as history including trauma and colonization. Finally, learners need some basic mastery of communication skills to help with the work of respecting each patient while striving to gain trust and address needs.

The initial aim was to develop CC training to help increase recruitment of Native Hawaiians into clinical trials, and later other groups, such as Pacific Islanders and Filipinos. The target audiences for the half-day training workshop were community physicians, investigators, nurses, coordinators, and other staff involved in clinical research. While the main focus was to develop CC training to help improve the researcher–study participant relationship, we were also interested in whether the training designed for medical students could be adapted for clinical researchers or those in other health-related professions.

Our existing CC training for JABSOM medical students is delivered throughout their first and second years of study and includes a series of workshops, lectures, an elective, a standardized patient exercise, and problem-based learning cases. A major challenge, therefore, was deciding what components of the medical student curriculum to include in the proposed workshop. We decided that several foundational components were needed to give a better understanding of the target population—including information on history, social determinants of health, health disparities, values and beliefs, communication skills, and the impacts of racism and bias.

Native Hawaiian populations were the initial focus of the workshop; therefore, the program included a historical overview on the impacts of colonization including cultural conflicts, the loss of language, culture, sovereignty, racism, and cultural historical trauma. It was important to highlight the impact of trauma as a significant contributor to the health disparities, including chronic disease and cancer, experienced by Native Hawaiians [9, 13].

Bias and racism influence interactions, whether implicitly or explicitly, personally or structurally. For this reason, workshop time was allocated for participants to explore in personal ways the concept that understanding bias starts with understanding their own personal values and beliefs and how these color perspectives and judgments. The self-awareness exercises encouraged storytelling, which allowed people to engage with each other on a more emotional or intuitive level, and were rooted in Indigenous ways of understanding oneself and one’s place in the world. These exercises were built around our understanding of a Native Hawaiian “sense of place” and genealogy and aimed to develop participants’ capacity to connect and foster trust with others.

While all cultures have some shared values and beliefs, there is also a lot of heterogeneity. Communication skills and understanding rely on being familiar with, and knowing how to negotiate within, cultures and values. Therefore, communication preferences for certain groups, as well as basic communication skills, were included in the workshop.

To attract a larger audience for the training, an educational workshop was offered through the Society of Clinical Research Associates (SOCRA) Hawaiʻi Chapter, an educational membership organization that provides educational credits to certified clinical research professionals (CCRP).

The Training Curriculum

The 4.5-hour workshop was presented by Native Hawaiian faculty (see Fig. 19.1). Native Hawaiian welcoming protocols opened the meeting. The workshop included four modules:

  1. 1.

    NH protocols, NH health disparities, and the need for cultural competency.

  2. 2.

    Self-awareness exercises.

  3. 3.

    NH history and the impact of cultural historical trauma.

  4. 4.

    The study participant–researcher interaction and communication skills.

Fig. 19.1
A photo of a woman in a denim shirt and scarf stands in front of a classroom, gesturing as she speaks. There is a whiteboard and a desk in the background.

Malina Kaulukukui leading a training session. (Photo: M Taafaki)

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The modules included a mix of lectures and small-group work.

Participants’ Responses to the Training

A total of 22 participants attended the workshop; most were female (77%). Almost all (82%) were associated with the UH cancer center, with 48% working at clinical sites and 43% working directly with study participants. Participants came from a variety of specializations and geographic origins: 32% were from Hawaiʻi, 50% from the US continent, and 19% from other countries.

There was a 91% completion rate for the workshop evaluation, which consisted of post-curricular Likert-scale quantitative and qualitative open-ended questions. All participants (100%) agreed that the workshop achieved its stated objective of utilizing cultural competency training to improve study participant–researcher relationships. For Modules 1, 3, and 4, 100% agreed that module objectives were met; for Module 2, 95% agreed that objectives were met (5% neutral).

Initial questions revealed that, prior to the workshop, 50% were unsure or disagreed that they could form effective, trusting relationships with NH research participants. At the end of the workshop, all agreed or strongly agreed that they had learned skills to improve relationships with NH study participants. See Fig. 19.2 for the quantitative evaluation results.

Fig. 19.2
A bar chart comparing participants responses to the effectiveness, trustworthiness, and relationship-building aspects of N H research. The chart indicates a significant improvement in these areas after a workshop.

Participants’ responses to the post-workshop evaluation

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Participants’ responses to the qualitative open-ended questions revolved around the applicability and practicality of lessons and activities, and growth in individual self-awareness. They valued the lessons about Hawaiian history (and its impact on health) and recognized the importance of building rapport and trust with patients and research participants. Figure 19.3 summarizes the qualitative responses to the workshop.

Fig. 19.3
A table with 2 columns and 3 rows. The rows are connected with concentric circles on the left. The first column depicts the importance of history and the need for building rapport and trust, useful teaching points, and workshop improvement.

Qualitative results of post-workshop assessment

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Participants’ feedback was overwhelmingly positive. We found that the CC training used with JABSOM medical students was easily adaptable to this set of learners. The modified CC curriculum yielded encouraging responses from our attendees, many of whom will be working with Native Hawaiian study participants. Organizers were encouraged to continue this type of workshop for other health disparate minority groups involved in clinical trials.

Conclusions

To achieve success, this type of workshop needs to be strongly supported by organizational leaders, such as the head of the research center. Since researchers and their staff may not come from Indigenous or minority backgrounds nor from other health disparate groups, training should include not only research staff and clinical trial recruiters but also the researchers themselves. We believe that conducting training like this can help attendees to develop cultural humility through authentic self-reflections, increase knowledge and awareness of communities and their values, and learn communication skills. These would be important initial steps toward strengthening effective relationships with study participants. Addressing recruitment and retention issues in Indigenous and minority populations through training may help to empower patients, ultimately contributing to making them full partners in the challenges around cancer treatment, including the decision to participate in clinical trials. The ultimate goal of cancer research is to eliminate cancer inequities, and, to do that, we need patients from the hardest-hit communities to be our partners in this crusade.

Next Steps

We believe this type of training can be helpful and impactful. We also believe that certain changes might create even more successful training. More time should be allocated, as it is difficult to limit CC training to a half-day workshop. More time would allow for deeper exploration of topics or other useful content such as patient panels. To fully understand the impact of the training, long-term assessments might be helpful, including follow-up surveys of trainees to ascertain behavior change, surveys of clinical study sites to see if recruitment and retention have changed, and focus groups of past participants to ascertain long-term impact or training gaps.

For cancer, it is critical to have the populations most impacted participate in clinical trials, and we offer this example of a way to help with known recruitment and retention issues with Indigenous and other health disparate groups.

The project described was supported by grant number U54GM138062 from the National Institute of General Medical Sciences (NIGMS), National Institutes of Health (NIH). Its contents are solely the responsibility of the authors and do not necessarily represent the official view of NIGMS or NIH, who provided faculty used to help design the training, as well as NCORP, who provided faculty, support for speakers, and access to trainees.