Conducting HIV Research in Racial and Ethnic Minority Communities: Building a Successful Interdisciplinary Research Team

Abstract

HIV infection occurs in disproportionately high rates among racial and ethnic minorities in the United States, making it imperative that individuals from these groups be included in research studies. Unfortunately, it is often difficult to recruit HIV-infected Hispanics and African Americans into clinical trials, but a skilled interdisciplinary team that includes researchers with racial and ethnic diversity can help. This article describes a successful approach for building an interdisciplinary team that values the participation of racial and ethnic minorities in clinical trials and that has the skills to work with these groups. The success of the Adelante (a Spanish word meaning forward) Team can be attributed to team members who actively participate in decision-making, are empowered, and function in a cohesive manner. Successful research teams build relationships with research participants in order to increase the probability that racial and ethnic minorities will enroll and participate fully in research.

Building a strong interdisciplinary research team is an important step in addressing the challenges of conducting HIV research in racial and ethnic minority communities. As the science and delivery of health care becomes increasingly complex, there is a need to move from discipline-specific to collaborative research models (Loeb et al., 2008). This paper will describe a successful approach used to build a collaborative interdisciplinary research team to study the participation of HIV-infected Hispanics and African Americans in clinical trials.

Aboelela and colleagues (2007) have recommended the following definition for interdisciplinary research:

Interdisciplinary research is any study or group of studies undertaken by scholars from two or more distinct scientific disciplines. The research is based upon a conceptual model that links or integrates theoretical frameworks from those disciplines, uses study design and methodology that is not limited to any one field, and requires the use of perspectives and skills of the involved disciplines throughout multiple phases of the research process. (p. 341)

The advantages of interdisciplinary research include reduction of fragmentation and duplication of efforts, representation of significant and varied perspectives, and development of culturally competent strategies (Garcia-Ramirez, Paloma, Suarez-Balcazar, & Balcazar, 2009; McGuire, 1999; Proenca, 2007). The members of our research team have combined skills and expertise in nursing, social work, bioethics, medicine, communications, research, linguistics, public relations, and patient recruitment.

The Need for Research in Racial and Ethnic Minority Communities

Although African Americans are the largest group affected by HIV infection in the United States, they continue to be underrepresented in clinical trials (Branson, Davis, & Butler, 2007; Garber, Hanusa, Switzer, Mellors, & Arnold, 2007; Loftin, Barnett, Bunn, & Sullivan, 2005). Hispanics are also underrepresented in medical research despite their disproportionate contributions to AIDS prevalence and HIV incidence (Brooks, Newman, Duan, & Ortiz, 2007; Zuniga, Blanco, Martinez, Strathdee, & Gifford, 2007). Due to the lack of racial and ethnic diversity in research studies, findings from homogenous study samples have limited application, and the burdens and benefits of research are not well distributed throughout society (Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999). Without addressing the inequalities and disparities in health care research and developing cultural, racial and ethnic, and linguistic competencies to better understand racial and ethnic minority populations, health care providers and researchers will continue to face the problem of underrepresentation of minorities in clinical research.

As part of the effort to increase racial and ethnic minority participation in research, the National Institutes of Health (NIH) Revitalization Act of 1993 placed responsibility on investigators to understand the attitudes and beliefs of research participants and to examine racial and ethnic minorities’ concerns about medical research (Corbie-Smith et al., 1999). An understanding of the factors that influence the participation of racial and ethnic minorities in clinical research studies could contribute to more effective recruitment strategies and decrease disparities in research representation, which would, in turn, enhance the generalizability of clinical research investigations (Gadegbeku et al., 2008; Paskett et al., 2008). This was the background for the development of our interdisciplinary research team.

A number of strategies can strengthen the participation, motivation, and contributions of individual team members to fortify the work of the research team. This paper describes four attributes—racial and ethnic concordance, participatory decision-making, team empowerment, and cohesiveness— for building successful research teams. Additionally, it discusses the application of the four attributes to an interdisciplinary team working with HIV-infected Hispanic and African American research participants.

Key Attributes of a Successful Team

Concordant Researchers

Racial and ethnic concordance refers to the process by which patients and clinicians are matched according to race and ethnicity (Cooper, Beach, Johnson, & Inui, 2006; Peragallo et al., 2005; Rivera-Goba & Nieto, 2007; Saha, Komaromy, Koepsell, & Bindman, 1999). Because racial concordance often allows greater understanding and rapport between health care providers and patients from racial and ethnic minority communities, the concordance of team members with the target population has the potential to improve communication and respect between researchers and participants. Studies that show that racial and ethnic minority populations may experience more harmonious, comfortable relationships with racially and ethnically concordant health care providers may also imply that racially and ethnically diverse research teams could be more effective in attracting diverse populations to research (Komaromy et al., 1996; Rivera-Goba et al., 2010; Saha et al., 1999). In addition, a diverse team may enable positive communication and trust, produce greater overall satisfaction among research participants, reinforce the development of cultural competencies, and provide an opportunity to identify cultural biases or stereotypes.

Participatory Decision-Making

Participatory decision-making (PDM) has been shown to increase employees’ work satisfaction, therefore increasing their motivation, productivity, and performance (Black & Gregersen, 1997). Gamage (2006) described PDM as the motivational approach in which members of an organization were given the opportunity to contribute their ideas resulting in ownership and commitment by the participant. This collaborative decision-making strategy not only led to organizational success and to the members’ appreciation of underlying plans of action, it also enhanced learning and personal growth among members of the organization (Gamage, 2006).

Empowerment

Team empowerment can also provide great benefits for the team by increasing involvement and productivity. Empowerment is the inherent motivation that results from an individual’s positive orientation to his or her work role (Spreitzer, 1995). Studies have shown that more empowered teams are more productive and proactive; they have higher levels of customer service, job satisfaction, and organizational and team commitment (Kirkman & Rosen, 1999). By delegating responsibility to team members, encouraging input, and enhancing each individual’s sense of personal control, there is a greater likelihood that team members will experience meaning, make an impact, and achieve autonomy (Proenca, 2007). By participating in goal setting, members become more confident in their abilities and will have a greater motivation toward excellence in their work (Kirkman & Rosen, 1999).

Cohesiveness

Creating cohesiveness among team members is another key component of a successful team. In order for this to occur, the team must first identify the skill set and expertise each individual team member can contribute. Once these skills have been recognized it is imperative that the team leader, in most scenarios the principal investigator, develop a plan to match the skills and expertise of individual members to the goals and mission of the team and to the research to be conducted. In this unification, each individual member can experience making a unique contribution to the success of the mission (Proenca, 2007). It is important for team members to communicate with their colleagues to be clear about the team’s goals and each individual’s role. In fact, greater knowledge, understanding, and awareness by member roles, will facilitate the development of team cooperation and coordination (Undre, Sevdalis, Healey, Darzi, & Vincent, 2006). When the team has cohesive working relationships, it is obvious to the research participants (Rivera-Goba et al., 2010). According to Grumbach and Bodenheimer (2004), several studies in the health care arena have demonstrated that more cohesive groups tend to have better outcomes for patients and health care providers than those lacking teamwork.

Building the Adelante Team

In this section, we describe a successful approach for building an interdisciplinary team aimed at increasing the participation of HIV-infected Hispanics and African Americans in clinical trials. To achieve the goal of building a successful research team, it was important to incorporate the concepts of an interdisciplinary approach, concordance, participatory decision-making, team empowerment, and cohesiveness as discussed above. The disciplines represented in the Adelante (a Spanish word meaning forward) Research Team were selected based on the needs of the protocol, Exploring Decision-Making of HIV-infected Hispanics and African Americans Participating in Clinical Trials. This was a descriptive, exploratory, mixed methods study designed to examine the decision-making process in a convenience sample of Hispanics and African Americans infected with HIV who were enrolled in active HIV study protocols at the NIH. Participants were asked about the factors that influenced their decisions to participate in research during focus groups and in-depth interviews. Methods and results for the study are presented elsewhere (Rivera-Goba et al., 2010).

Before inviting individuals to join the team, the team leader, in this case the principal investigator of the protocol, created a chart listing the skills necessary for the interdisciplinary team to be most effective. The chart included experience in the following categories: protocol development, recruiting, interviewing, conducting in-depth interviews and focus groups, and dissemination of findings. In addition, the chart included a list of areas of expertise that would be needed for an effective team, including knowledge of HIV, being bilingual and/or bicultural, and zeal for research in this population.

At the time the team was organized, it was important for the team members to have experience working with patients in general and with racial and ethnic minorities specifically. The majority of the team members had experience working with Hispanics and African Americans. Other key determinants were gender, and racial and ethnic matching between the research team members and study participants. After completing the chart, the team leader observed that all prospective team members had “people skills,” which is the ability to interact and collaborate with others on an interpersonal level, and to enjoy doing so. They also had varying degrees of protocol development, implementation, analysis, and dissemination experience. A very important observation was that many of the prospective team members also had experience working in teams and had demonstrated the capability of being effective team players. Furthermore, as recommended by McGuire (1999), the team consisted of individuals who could contribute unique skills to complement the skills of other team members in different disciplines. After team members were identified, the team leader communicated with them initially via telephone and then in person, thoroughly explained the roles to each member, and clearly outlined the objectives of the team. Research has indicated that team awareness of one another’s roles and a clear understanding of team objectives not only results in effective teamwork but also leads to enhanced cooperation and coordination (Undre et al., 2006).

The interdisciplinary research team for this study consisted of one nurse researcher, one nurse manager, two research nurses, one bioethicist (specializing in research among vulnerable populations), one physician, one patient recruitment specialist, one linguist, two social workers, one statistician, and two undergraduate nursing students. Three post-baccalaureate students joined the team at different times after the data collection phase. More than half of the research team partners were bilingual and bicultural. Team members’ disciplines, race and ethnicity, and gender are shown in Table 1. Team members who had prior experience working with HIV-infected patients appreciated the opportunity to be part of a research team engaged in exploring the development of more effective recruitment strategies. Hence, the research topic was one of the main reasons the team members decided to join the team.

Table 1.

Team Characteristics

Discipline	Gender	Race/Ethnicity
Nurse Researcher	Female	Hispanic
Research Nurse	Female	Hispanic
Research Nurse	Female	Hispanic
Nurse Manager	Female	African American
Bioethicist	Female	White
Physician	Female	White
Patient Recruitment Specialist	Female	Hispanic
Linguist	Male	Hispanic
Social Worker	Female	African American/Hispanic
Social Worker	Female	Hispanic
Statistician	Female	White
Undergraduate Nursing Student	Female	Hispanic
Undergraduate Nursing Student	Female	Hispanic
Post-baccalaureate Student	Female	African American/Hispanic
Post-baccalaureate Student	Female	Hispanic
Post-baccalaureate Student	Female	African American

Consistent with a team approach, however, each team member was able to rotate between leader and contributor roles for various parts of the research. For instance, the team’s linguist, who worked as a medical interpreter, had a strong grasp on language translation and scientific terminology. For this study, the linguist was responsible for translating the consent form, focus group guide, in-depth interview guide, recruitment flyers, demographics, and a decline-to-participate survey. After initial translation, other bilingual/bicultural associate investigators reviewed the documents to verify accuracy.

Team members were at different points in their career paths ranging from novice to experts in research. Different expertise levels allowed senior members to provide guidance to their less experienced colleagues. For example, not all team members had interviewing experience prior to participating in the research team and these individuals needed training. Various methods were used for this training. The first requirement was a series of three 2-hour lectures that culminated with a mock focus group. The second component of training consisted of shadowing the principal investigator, who was also the team leader, while she conducted an interview or moderated a focus group for data collection. Roles were then reversed; the team leader observed the team members conducting an interview or leading a focus group. This reversal of roles served to ensure that the guidelines established in the research protocol were successfully followed. All team members completed the training regardless of their experience with either in-depth interviews or focus groups. Because all team members were trained to lead focus groups and conduct in-depth interviews, their roles as moderators or facilitators were assigned according to their comfort levels. Although the Adelante Research Team included many members, only the principal investigator and one post-baccalaureate student were dedicated full-time to the study. For the rest of the team, the time devoted to the study was in addition to their primary job responsibilities. The team leader matched the role(s) of each individual according to discipline, availability, and what would best meet the needs of the protocol. This speaks to the important role of the team leader in selecting the team members as well as in managing and leading the team.

Branding

Members branded the team by developing a team logo. After thorough collaboration and agreement, the group designed the logo with the assistance of a Clinical Nurse Informaticist. The logo (see Figure 1) depicted a person’s hand reaching for a shining star, with the phrase “Unity, Diversity, and Commitment in Research.” The logo was a symbolic representation of the team’s effort to reach the goal of including more racial and ethnic minority research participants across NIH. The three elements—Unity, Diversity, and Commitment—captured areas of the research process that the team considered essential to work with racial and ethnic minority communities and to accomplish the team’s mission to study research participation by HIV-infected Hispanics and African Americans in clinical studies.

Figure 1.

Team Logo

Team Member Evaluation

Adelante team members evaluated the team following the data collection phase of the research study and were asked about their experiences as a team member from the time they received the invitation to the completion of data collection. The purpose of the evaluation process was to identify successful strategies for achieving a unified research team. The evaluation tool consisted of five open-ended questions that asked team members about their contributions to the team, their perceptions of the team process, and their overall experiences (see Table 2). Allowing team members to give input about the process was another asset of the team. As Adelante members mastered different tasks, they were able to lead other segments of the research methods process. Therefore, members from all levels of expertise felt comfortable sharing their ideas and perspectives about the research process. The members also appreciated the leadership skills provided by the team leader and conveyed impressions about the way the team leader “connects with each individual, celebrates the contributions that each member brings, and encourages dedication and team work.”

Table 2.

Team Evaluation Tool

Questions		Sample Quotes
1.	What first interested you in becoming part of this team?	“The topic of the research.” “The diversity and the interdisciplinary integration of the research team.” “As a novice investigator, I find her [principal investigator] mentoring skills outstanding.”
2.	What strengths did you bring to the team? How were your strengths used?	“I have done both qualitative and quantitative research on related topics in the past.” “Not only am I bilingual in English and Spanish, but I am an expert in translation. I was able to finish the work initiated by a colleague who had to leave the team. My contribution helped the team to keep moving forward.” “My professional training in Social Work; mental health and group facilitator; I am a team player; and finally my own life and cultural background combination as a Black woman with Hispanic and West Indian cultural background.” “I bring an analytical, thoughtful eye; experience in group work; understanding of psychological, emotional, social, and economic factors that form the context of our research.”
3.	What three adjectives would you use to describe the team process?	“Collegial” “Respectful” “Working together in a joyful way” “Collaborative” “Productive” “Inclusive”
4.	What has been your overall experience as a team member?	“It has been inspiring to see how well people with diverse strengths and perspectives can come together and commit themselves to each other and a common goal.” “It was a positive and safe environment.” “I had a very good experience as a team member; I have been able to contribute to the research process as a member of the team and I have also learned from the experience.” “Very positive – I really enjoy building camaraderie with team members while we move forward with the research.”
5.	Is there anything else you would like to add/share?	“In my view, leadership is the key to making this kind of process work well. The principal investigator is a gifted leader in that she connects with each individual, celebrates the contributions that each team member brings, and encourages dedication and team work while keeping her eye on the goal.” “I am very honored to be part of the Adelante research team and I look forward to continue participating in all the other commitments and research.” “I think it’s a testament to the strength and unity of the team that we are invested in the research.” “I think this team is a model of what collaboration should look like. Again, the mentoring offered by the principal investigator is phenomenal. She acknowledges individual competence and ensures that all the team members have what they need to participate successfully. I look forward to continued association with the team and especially with the principal investigator.”

Defining Success

To what extent was this research team successful? We used three criteria—staff satisfaction and growth, participant-team member relationship, and successful data collection—to answer this question and measure the success of our research team. Staff satisfaction and growth were evident in a variety of ways. For the majority of the team members, research assignments were not part of their job descriptions. Hence, the time spent and enthusiasm demonstrated by each individual were a testament to the team members’ continued commitment and devotion to support the team’s goal. Their motivation and quality performances were attributed to the feelings of empowerment they received from their fellow team members. For instance, all team members commented on the team’s extraordinary cohesiveness, respect for each other, and open communication; these were all cited as main reasons for the close relationships. Supporting each other created a harmonious environment in which team members were enthusiastic about working together. Collaboration among the members of the team was one of the most common strengths mentioned by Adelante team members. Dedication from all team members to working on the common goal of moving the research forward was another aspect that made the team successful. The respect that each member received was reciprocated.

The concept of building relationships was a key to building a successful research team. In addition to building relationships among team members, it was important for this to be transparent to research participants in order to enhance participant-team member relationships. For instance, one of the research participants touched a team member’s arm and later disclosed that it was done on purpose to see the member’s reaction. The participant also mentioned that after the arm touching incident it was evident that the team member cared about the participants. In turn, this allowed the participant to feel comfortable sharing experiences as an HIV-infected transgender patient. In general, participants said that participating in this study was the first time they were able to talk about being infected with HIV and share their experiences as research participants.

The team unanimously thought that productivity and enjoyment while conducting research can go hand in hand. In fact, they felt they were more productive because they enjoyed working within this group. An unanticipated benefit of the process was that the data were collected in significantly less time than expected. Most of the data (focus groups and in-depth interviews) were collected in 3 months. This was due to the team members’ flexibility and commitment to accomplishing the team goals. For the final in-depth interview, the participant had several scheduling challenges, which resulted in extending the data collection completion date by 3 months. The principal investigator felt it was important to work with this participant even though it meant extending data collection to honor his desire to participate in the study, and the rest of the team agreed. The goal was to complete the data collection in 12 months; it actually took 6 months. Other departmental colleagues shared their surprise at how quickly the data were collected.

Conclusion

Interdisciplinary collaboration is one approach for dealing with the growing complexities of clinical research and for addressing the issue of health disparities in clinical research. Various factors need to be taken into consideration when building a research team. In addition to representation from several disciplines, matching team members’ race and ethnicity with the participant population is valuable. Furthermore, the team’s success is more likely if team members share the same goals and clearly understand the objectives of building the team. This team-building process was used for an HIV study, but the model can be applied to studies of other diseases or conditions and for other types of research that would benefit from participation by Hispanics and African Americans.

The team recognized the importance of sharing this successful strategy with others and used the logo on lapel pins and bookmarks that have been distributed in national conferences and meetings. The logo pins and bookmarks serve to remind health professionals about the team’s work at the NIH Clinical Center and its importance in the attempt to eliminate health disparities in research and in health care delivery. It also functions as a reminder of the team members’ devotion to the mission that initially brought them together.