Clinical and Translational Research and Community Engagement: Implications for Researcher Capacity Building

Abstract

This research sought to better understand how clinical and translational research is defined and perceived by community service providers. In addition, the research sought to elicit how the perspectives of service providers may hinder or facilitate collaborative research efforts. The study employed a qualitative methodology, focus groups. A nonprobability sampling strategy was used to recruit participants from three neighborhoods in the Tufts University’s catchment area. Focus group findings add to the nascent body of literature on how community partners view clinical and translational research and researchers. Findings indicate that cultural disconnects, between researchers and community partners exist, as does mistrust, all of which serve as potential barriers to community research partnerships. This paper suggests rethinking the business of community engagement in researcher, particularly as it relates to building research capacity to approach, engage, and partner with communities. Clin Trans Sci 2012; Volume 5: 329–332

Introduction

During the past decade, clinical and translational research, aimed at catalyzing the development of new research findings and their adoption into real world settings emerged as a priority of the National Institutes of Health (NIH). In 2006, NIH launched their Clinical and Translational Science Award (CTSA) initiative, supporting academic institutions to foster clinical and translational research. 1 Implementing clinical and translational research similarly became a public health priority, as research translation is important to the development and implementation of effective public health practice and meaningful policy.2, 3, 4 Translating research into both practice and policy requires collaboration between researchers, practitioners and the community.5 However, beyond subtle differences in disciplinary and group norms; past experiences, lack of common understanding of researcher goals and research related language, as well as divergent conceptualizations of health‐related priority areas can serve as barriers to collaboration, inhibiting communication and the partnership process.6

In an effort to engage community stakeholders in defining university research initiatives and respond to community research priority areas, The Center for Aligning Researchers and Communities for Health (ARCH), a leadership committee of academic and community partners, at the Tufts Clinical and Translational Science Institute (CTSI), set to explore how local service providers define clinical and translational research. The ultimate goal of this endeavor was to identify potential academic‐community synergies to inform the focus of ARCH and its initiatives in the first year of the Tufts CTSI.

Translational Research and Community Engagement

Broadly speaking, clinical and translational research refers to the application of research findings, from basic science to policy and practice based research, to improve the public’s health. However, more specific definitions have emerged to distinguish between the various phases of translation. While the number of translational gaps in each model varies, all stress the need for translational research that bridges bench, bedside, and community.2, 5, 7, 8

A team science approach that engages communities is needed if the translation of knowledge into real‐world settings is to be effective.9, 10 Community engaged research (CEnR) aims to involve those traditionally left out of the research process. Such strategies incorporate both researchers and community stakeholders working collaboratively.10, 11, 12, 13 CEnR approaches have the potential to facilitate research translation by convening stakeholders representing diverse perspectives to determine research priorities, as well as how and even whether information should be translated into practice and/or policy. Engaging community stakeholders in the research process, from planning and implementation to dissemination, may also enhance clinical and translational research efforts by creating a common way of talking about and understanding research;14 demystifying the science so that it can be incorporated into practice settings. Ultimately, CEnR may be instrumental in sparking bi‐directional information pathways, where by knowledge is flowing to researchers from the community and vice versa5, 9 We undertook this work to ascertain the perceptions of community‐based organizations, who are often approached by researchers interested in accessing their constituents. Our primary goal was to help establish a strategic direction for ARCH, the community engagement arm of the Tufts University CTSI.

Methods

Design

Key research questions included how local community‐based organizations define clinical and translational research. In addition, we explored their perceptions of research and local health priority areas. Given the exploratory nature of our questions, qualitative research methods were selected, as they are well‐suited in the formative stage of investigation and for exploring individuals’ knowledge, attitudes, and beliefs on a specific topic.15, 16 The research utilized a community engaged approach as it was collaboratively designed and implemented by the ARCH leadership which is comprised of university researchers and community stakeholders.

Focus groups, specifically, were chosen to generate a dialog with community stakeholders. The literature indicates that focus groups are an effective mechanism by which to reduce power dynamics between marginalized communities and researchers.17 Although community stakeholders participating in this study tended to be well educated staff of community‐based organizations, there remains a well documented divide between community leaders and academics.18 The Tufts University Health Sciences Institutional Review Board approved this research.

Sample and recruitment

Focus groups (n= 3) were conducted in each of the Tufts University host communities, which include the city of Somerville, and the Boston Chinatown neighborhood, as well as the Roxbury/Dorchester neighborhoods. Community stakeholders were recruited using the snowball sampling technique,19 with initial contacts including existing ARCH leadership committee partners and stakeholders. A total of 22 individuals were invited. Focus groups generally consist of 6–10 members,17 our groups had 5–6 members. Participants (n= 16) included staff and volunteers at community‐based organizations and community health centers. Participants were fluent in English and all of the participants completed 2–4 years of college with 25% attending or completing graduate school, which was expected given the population. Overall, 81% of participants were female. The fact that women were over represented in the sample may have been due to our focus on public health and social service organizations, given that the majority of public health and social work graduates are women, 70% and 85%, respectively.20 Martinez et al. provides a more detailed description of the target communities.21

Procedures

ARCH researchers and community stakeholders developed the focus group protocol collaboratively in order to assure that it was clear, concise and appropriate for the target audience. The script and questions were designed to elicit definitions and perceptions of clinical and translational research, as well as health related priority areas (health related priority areas are reported on in Ref. [21]).

Participants were contacted by telephone and e‐mail and invited to take part in the study, they were then asked to identify colleagues in the community who might also be appropriate and able to participate. Additional individuals were then contacted by the ARCH members and invited to participate. At the time of the focus group consent was administered and the purpose of the study was reviewed. Once questions were addressed the facilitator proceeded to the questions. All groups were all facilitated by the same individual (a community member of the ARCH leadership committee who has extensive professional experience leading focus groups) to assure continuity and each group was between 90 and 120 minutes in durations. In addition to the facilitator there was a note taker (a student) present at each group. The focus groups were each audio taped.

Qualitative analysis

We transcribed audiotapes in Microsoft Word and uploaded transcriptions into MaxQDA, a qualitative data management software package. Transcripts for each group were generated and reviewed by three researchers who then coded the data thematically by question. The researchers then compared codes and an initial codebook was developed, which was then used to recode the transcripts. A logical analysis looked for patterns of difference, as well as similarities that emerged from cross‐classifying the data. We prepared a written summary of the findings by group, which was presented back to the research team for further refinement.21 The team identified general themes and patterns, and delineated contrasts in responses from group to group.

Results

Community definitions of clinical and translational research

Participants in each of the three groups described clinical research similarly, mentioning randomized control trials, double blind studies, and other study designs examining medical conditions, health or medical care. However, definitions of translational research were less consistent. Some participants had a general awareness of the purpose and goals of translational research. As reported by one participant: “For me, it’s how to implement something you learn about research such as an intervention into (how other people said) putting research findings into policy and practice.”

However, others were thrown by semantics, literally interpreting the meaning to be related to language access, as illustrated by the following quotation. “As far as the research information if that data is pertinent and correctly translated into either another language or that information also takes into effect another culture as well.” This misinterpretation was particularly common among participants in the Chinatown group, where fewer community‐based organizations have experience with medical research in comparison to the Somerville and Boston groups.

Experiences and perceptions

Participants were asked about their experience with and perceptions of clinical and translational research. For all three groups, exploitation and a lack of mutual respect emerged as key themes. Participants shared that at times, communities have felt like “guinea pigs” in research or felt talked down to by researchers. One person commented: “A lot of people who do research really don’t think your average person can understand what the hell is going on. So, they say let us do this and we give you 25 bucks or a Stop and Shop card. That’s not what it is all about. People can understand. People can get trained. You can do research or get training to have something that is longer lasting as part of the process.” Participants did not want to see research uni‐directional or governed by top down relationships. More so, participants were interested in a long‐term investment, and relationships with academic researchers that took into account mutual interests and had direct benefit to the community being studied.

Participants across groups did not see researchers as interested in the application of research to the broad health‐related issues present in the daily lives of their constituents. Participants based this perception on their past experiences where researchers only contacted community members when they were in need their help. One participant commented: “In my community, there is still a lot of hesitation and skepticism towards the medical and clinical aspect. Are you looking to help or are you looking to further your data collection? Is it truly going to benefit me personally or my community at large or is it just another way to get funding? There is still skepticism.” Involving the community and taking time to ensure that they understand the research were identified as ways to better ensure successful clinical and translational research partnerships. Participants indicated an interest in reciprocal research relationships:“[Y]ou can’t start with the clinical trials. You have to start with something that matters . . . start with the screening where you give something or you’re providing some practical information about an issue that they’re dealing with and then go from there.”

Participants across the board mentioned the importance of effective communication in collaborative efforts, particularly as they relate to the public’s health. Essential to this communication was a common language and the ability for each collaborator to understand terms and the meaning they convey. Chinatown‐based focus group members pointed to the lack of interpreters and effective translation as impeding the community’s understanding of any research project. Participants in the Somerville focus group spoke about the research language that exist in a study as being “too complex” and the community often not understanding the purpose of the research. One participant in the Boston focus group echoed this sentiment and discussed the negative impact of using academic jargon:

“Sometimes if we just take away the jargon and speak to people where they are and what they know, they will get it. And we, as researchers or you all as researchers, can take the information and you translate it back into what you need. But in order for the community to really benefit when you put the terms out there and your eyes glaze over it. I just get tired of hearing the jargon.”

Overall, the lack of a common language, both English/non‐English and technical jargon/lay language and understanding coupled with negative past experiences were perceived to hindered the development of relationships, and get in the way of communication.

Discussion

Findings indicate a lack of understanding about the meaning of the term, “translational research” among community stakeholders. This points a need for the promotion of a better understanding of clinical and translational research in order to demystify scientific research and peak the public’s interest in participation in such efforts. This is especially true since translational research may be precisely the sort of research that would actually address community concerns, as it focuses not simply on the development of novel interventions but their relevance to and uptake within community settings.

It has been suggested that opportunities for creating common language, devoid of jargon, must be created in order to bridge the language/power divide that exists between communities and researchers.22 Given that power is embedded within language,23 the development of a shared understanding may help to alleviate the inequality that exists between the academy and the community. It has been well documented that communication barriers threaten the productivity of partnership relationships;12, 24 while effective communication promotes shared dialogue and facilitates the balance of power between researchers and communities.25, 26 The creation of a lexicon early on may serve to improve team communication as relationships progress. These findings are significant as they suggest that how research language is used may influence the willingness of community stakeholders to engage in partnerships.

Beyond language differences, participants were skeptical of researcher intentions. Such tensions between community and university stakeholders are described in the literature as “insider‐outsider tensions.”27 Resulting from historical power dynamics, differing timetables, and divergent outcome goals these tensions are real,27 and have been similarly described as threats to team science.28 While poor relationships characterized by tension and language barriers are not new with respect to public health and community partnerships, for CTSAs and clinical and translational researchers seeking to engage with community stakeholders, they may present a new and perhaps unexpected challenge.

Findings suggest a need for education and training focused on building the capacity of both academic researchers and communities to effectively work together to conduct clinical and translational research. A number of the CTSA sites have developed, or are in the process of developing, capacity‐building programs for community members, practitioners, and leaders. All too often, however, educational efforts or those that seek to build capacity are focused on “educating the community.”

Interviews with community members suggest that rather than simply focusing on changing the attitudes of the community, structural changes on the academic side will be necessary to improve the quality of community involvement in research.29 The benefits to research participation should be made clear, and the community needs to be involved in the research process from conceptualization to implementation in a decision‐making role, whereby community expertise is recognized and fiscally validated.30 Such an approach would require changing the way we view, engage and interact with communities. Moreover, it would call for acknowledging and addressing underlying stereotypes and bias,30 which could take the form of cultural competence training or faculty diversification.30 Last, community engagement would need to be acknowledged as a core activity for review and promotion.

Perhaps there are lessons to be learned from interventions in organizational management that seek to increase cultural intelligence (CI), or the ability of individuals to work across multiple cultural contexts. CI is often described in the organizational management literature as a much‐needed asset in a global economy,31, 32, 33, 34 as organizations need to know that their members are able to effectively operate within diverse settings and with a diverse clientele. Strategies to increase CI most commonly involve some type of immersion experience, creating individuals who span the boundaries of their own professional training. Perhaps increasing researcher CI might involve educational programming that includes spending more time with community stakeholders, beyond research engagement. This type of experience of course would require an institutional commitment, beyond that of an individual researcher, which may be necessary if we are going to change the way clinical and translational research is conducted. Similarly, integrating communities more actively into research has to potential to create boundary spanners with roots in community based organizations. This type of innovative approach to improving research enterprise fall within the broader mission of the CTSA sites and need to be encouraged and cultivated.

Limitations

There are limitations to our study. Although focus groups provide a valuable method for gaining perspectives about health‐related issues, participants include a self‐selected group. Furthermore, it is important to note that participants represented agency staff familiar with Tufts, not grassroots residents, which was important for us as we were interested in gaining the perspectives of potential community partner organizations. However, we acknowledge that participants may have more knowledge on this topic than the grassroots populations with whom they work.

Conclusions

Building community understanding of clinical and translational research and engaging in research partnerships involves a re‐framing of how researchers communicate and interact with the broader community. Recent efforts have focused on community capacity building. However, researcher training and capacity building is also a necessary step in this process, as it may prepare researchers with the skills needed to successfully navigate the local landscape and engage in meaningful partnerships that are mutually beneficial. Changing the way researchers do business in communities, so that they are collaboratively doing business in partnership with communities, however, will require an institutional commitment beyond the individual researcher and the support of the larger research enterprise.