Abstract
Community health workers (CHWs) are increasingly incorporated into research teams. Training them in research methodology and ethics, while relating these themes to a community’s characteristics, may help to better integrate these health promotion personnel into research teams. An interactive training course on research fundamentals for CHWs was designed and implemented jointly by a community agency serving a primarily Latino, rural population and an academic health center. A focus group of community members and input from community leaders comprised a community-based participatory research model to create three 3-hour interactive training sessions. The resulting curriculum was interactive and successfully stimulated dialogue between trainees and academic researchers. By choosing course activities that elicited community-specific responses into each session’s discussion, researchers learned about the community as much as the training course educated CHWs about research. The approach is readily adaptable, making it useful to other communities where CHWs are part of the health system.
Keywords
Introduction
Community engagement is important to medical research and a required component of the Clinical and Translational Science Awards program (Westfall et al., 2012). Funded by the National Institutes of Health, the Clinical and Translational Science Awards program aims to speed the translation of basic science discoveries to new treatments accepted by clinicians and the general public. To improve health outcomes, investigators are encouraged to engage populations from diverse cultures who experience health disparities.
One such group is the Latino/Hispanic community, which often relies on community health workers (CHWs) to work in traditionally underserved community settings to promote health. In their combined roles as members of their communities and members of the health workforce, CHWs, often called promotores, are well placed to facilitate research projects by bridging investigators with priority populations, where their dual role has demonstrated clear benefits (St John, Johnson, Sharkey, Dean, & Arandia, 2013).
CHWs have recruited participants, collected data, delivered interventions, and educated community members about the research process (Rhodes, Foley, Zometa, & Bloom, 2007). In participatory models, they have shared responsibilities for study development, data interpretation and analysis, and dissemination of findings (Rhodes et al., 2007). Because of these contributions, training and support in research skills are recommended for CHWs (Otiniano, Carroll-Scott, Toy, & Wallace, 2011; St John et al., 2013).
Background/Literature Review
Integration of CHWs into research models has resulted in challenges because of misalignment in researcher and community interests and expectations. For example, peer-to-peer outreach by CHWs can be more effective and efficient than direct intervention of a health professional in improving health-related behaviors. But peer-to-peer outreach has the potential to be coercive in a recruitment setting, where trusting relationships with potential participants create potential ethical conflicts in recruitment (Anderson et al., 2012; Terpstra, Coleman, Simon, & Nebeker, 2011). Another potential challenge is that CHWs typically provide health resources to members of their community, which could inadvertently contaminate a research study if the design includes intervention and comparison groups (Anderson et al., 2012; Terpstra et al., 2011). CHWs typically manage confidential participant information, but few published studies with CHWs address training in research implementation (O’Brien, Squires, Bixby, & Larson, 2009). Even when trained in specific study protocols, CHWs’ lack of background knowledge in basic research methodology may obstruct protocol adherence (Terpstra et al., 2011). Training of CHWs in research principles to increase their awareness of potential conflicts of interest may help foster ethical recruitment, effective interventions, integrity of research design, and optimal retention rates.
For trainees without higher education, such as many CHWs, recommended interactive teaching techniques include role-play and demonstration, rather than didactic models or rote memorization (Catalani, Findley, Matos, & Rodriguez, 2009). When the culture of the trainees is outside of the dominant culture, it is essential to create an understandable, culturally sensitive curriculum (Yu et al., 2007). The aims of this project were to (a) determine the feasibility and acceptability of a community-academic partnership to train CHWs and (b) develop and implement a curriculum for CHWs on fundamentals of research.
Method
Setting and Population
This pilot community–academic partnership was defined by principles of community-based participatory research (CBPR). The academic partner is University of California, San Diego’s Clinical & Translational Research Institute (CTRI), a recipient of a Clinical and Translational Science Award, and represented by the directors of their community engagement and ethics divisions, as well as a program coordinator. The Clinical & Translational Research Institute subcontracted to the community partner, designed the project with community input, and provided technical assistance and trainers for the course.
The community partner is the Clinicas de Salud del Pueblo (Clinicas), a private, nonprofit corporation and designated federally qualified health center composed of 11 community clinics. Clinicas provides comprehensive primary health care, enabling services to low-income, primarily Spanish-speaking residents in California’s rural, agrarian Imperial and Riverside Counties. Environmental and economic factors contribute to significant health disparities in the region. The median household income is approximately 33% below that of California in general (U.S. Census Bureau, 2011). Clinicas has a history of leveraging the culturally competent skills and knowledge of CHWs, to link the community to the Clinicas health care network and provide information to community members. Clinicas conceived this project to attract more clinical research to its clinics and represented the needs of the community by assembling focus groups and getting input from CHWs. Clinicas representatives were the chief executive officer, the medical director, and the director of programs. Information from the community member focus group was analyzed and summarized by a third party (Center for Information and Study on Clinical Research Participation; Boston, MA).
Community/Stakeholder Involvement
Clinicas and community stakeholders informed the format and content of the curriculum. A focus group with eight community members was conducted in Spanish at Clinicas to learn about the community’s perceptions of clinical research and research participation. This revealed that members of this community wanted to be recruited by people they knew and that they are motivated to volunteer for research if the research is likely to benefit the local community. As a result, one case scenario about benefits to the local (versus national or global) community was introduced into the curriculum, as was the issue about CHWs knowing the people whom they recruit.
In addition to the focus group, input was solicited from Clinicas administrative and clinical leaders regarding that organization’s research priorities, previous experiences with research, and perceptions of the community’s interest. The process revealed that Clinicas is an organization with previous experience collaborating in large research grants and with universities. Clinicas recommended that both CHWs and the clinic’s multi-function clerks attend the workshop, because these clerks would likely be involved in research initiatives. Clinicas leaders also elected to compensate their staff for the evenings they would spend taking the course (which was free of charge).
Last, we interviewed two rural-based clinicians who conduct research from their clinical offices. Their input was consistent with the outcomes of the focus group. They reported that poor retention in studies was not uncommon, possibly because individuals join studies because of personal appeals from promotores, rather than a sincere interest in the research itself.
Training Objectives
Based on community feedback, four learning objectives were defined. Participants should be able to (a) explain and discuss basic themes of human participant research (i.e., methodology and ethical considerations); (b) distinguish CHWs’ roles as community educators/advocates and research recruiters/interventionists, and mitigate key conflicts that occur as a result; (c) recognize characteristics of the local community that may pose challenges to investigators (e.g., cultural norms, language, geographic, or transportation limitations); and (d) identify and effectively articulate their community’s priorities and preferences to academic researchers.
Curriculum Development
In addition to community input, development of this curriculum was informed by the authors’ previous training experiences, including an interactive curriculum used in local high schools to teach fundamentals of clinical research by conducting a mock dental hygiene experiment and Project TRES (Training in Research Ethics and Standards), a research ethics curriculum for promotores available at https://nationalethicscenter.org/resources/4016
Curriculum content
The curriculum was divided into six separate activities designed to emphasize group work, discussion, and role-play activities. Although taught in Spanish, all materials were also available in English. Learning activities emphasized basic research knowledge during initial activities and subsequently focused on application of knowledge to specific case scenarios. Scenarios were designed to explore and informally assess understanding of research concepts such as ethical recruitment and retention, randomization, blinding and confidentiality. Table 1 describes the activities in more detail.
Course Activities, With Related Objectives, Scheduling, and Examples of Content a
Full curriculum available from corresponding author.
Each of three sessions was booked for 3 hours, with only 2.5 hours of scheduled activities, allowing for breaks and delays.
Delivery of the curriculum
The training consisted of three weekly evening sessions, each 3 hours in duration. The curriculum was taught by a team of three bilingual instructors (one physician, and two master’s-level community researchers) who met for several hours, weeks before the course to discuss curriculum delivery. They were chosen for their experience in research and community health. Trainees, with a high school level command of written English or Spanish, were invited by Clinicas leaders and two local clinician researchers. The community partner elected to compensate trainees for hours of training; we did not evaluate either the necessity or ramifications of this gesture.
Evaluation
Instructors made written records of group discussions. Two months after training, participants were reconvened in a group setting and asked to evaluate the curriculum through a written questionnaire (available in Spanish and English) with six open-ended and four Likert-type scale questions. This tool assessed the perceived value of the workshop (e.g., how well the training helped them explain research to others, ranging from not helpful to very helpful) and written responses of their understanding of basic concepts in the curriculum (i.e., randomization, control group, consent). Surveys completed in Spanish were then translated to English. Survey forms were not identifiable by respondents’ names and were anonymous to those analyzing the data.
Results
Curriculum Development and Implementation
The process of development and implementation of this course (at all stages, from formative to evaluation) offered benefits to the community, CHWs, and researchers (Table 2).
Benefits of Informal Assessments and Community Health Worker (CHW) Training
Thirteen Spanish-speaking women living in Imperial County, California, completed the workshop. Ten were current or former CHWs or administrative staff with Clinicas, two were from a local private research clinic, and one worked for a University of California, San Diego study based in Imperial County. Three had no previous experience with research, and three were currently employed in research studies. The remaining trainees had minimal to moderate research experience.
Evaluation
Participation and interest of trainees was considered by the instructors to be very high. They documented lively discussion composed of many questions and opinions that evolved over the course of each discussion. Specifically, when trainees were asked to design a research study that shed light on home remedies familiar to them, they began to understand the logic behind the scientific method. Flip chart notes taken by instructors, particularly, during the third session’s case study activities, revealed thoughtful consideration of research themes, such as importance of informed consent and privacy and of protected data. CHWs also voiced recognition, using their own words, that people’s motivation to volunteer for a study had to be for reasons other than pleasing the CHW, if projects were to retain participants. CHWs also volunteered interesting parallels between course materials and their own experiences as CHWs and relayed information on incentives of value to their community’s members, community members’ attitudes toward scientists and conventional medicine, and logistical barriers to participation. CHWs also explained the importance of being in contact with participants throughout the research process, not solely for recruitment.
All trainees reported satisfaction with the curriculum (12 scored it 5 on a scale of 1-5), all reported positive changes in knowledge, perceived value, and/or intent to change because of the workshop. Of the 11 trainees asked to write definitions of three key research terms (randomization, consent form, and control group), 1 accurately defined all three concepts, and 6 accurately defined two concepts, but four could define one or none.
Discussion
Several practical implications can be drawn from this academic-community collaboration. First, a capacity-building curriculum for CHWs that reflects local community and institutional perceptions of research and explores ways to overcome barriers to conducting research can be built from a robust CBPR formative process that includes input from community members and community clinical leaders. The development of this course and the course itself provoked reflective discussion regarding the role of CHWs in research and potential pitfalls of CHWs playing dual roles of health educator and research professional.
We found it feasible to create a curriculum of interactive group activities that is community tailored and acceptable to trainees. All activities designed to generate understanding and discussion can be readily adopted to meet the needs of CHWs in very different communities. However, course instructors need to manage diverse participant responses, which we suspect would differ widely in different communities. Our case scenarios, addressing health concerns of importance to this community (i.e., diabetes) and its environment (sunscreen), may need to be modified to reflect health priorities in other communities.
Implementation of this curriculum established a forum for mutual learning, understanding, communication, and respect. As such, investigators could better understand the community and thereby improve their research. Future regional researchers will be more aware of the relative importance of participant incentives, methods to overcome logistical barriers to participation, study location, hours of operation, provision of childcare, and opportunities to socialize. Co-learning between academic and engaged community partners, as in this course, is a central principle in the practice of CBPR (St John et al., 2013; Wallerstein & Duran, 2006).
Qualitative outcomes were indicative of a highly successful training; however, in the absence of a pretest, changes in level of research knowledge were not definitively determined. Trainees’ recall of key concepts was disappointing but not entirely discouraging. Of the three major research concepts taught, only 7 of 11 respondents could accurately explain at least two. It is important to consider, however, that the written evaluation method may have underestimated retention of knowledge and ability to apply what was learned (e.g., Catalani et al., 2009). Prospectively, we recommend a pretest/posttest design and asking participants to respond verbally to case scenarios to determine how well course concepts are understood and to assess ability to apply those concepts.
CBPR both depends on and helps foster trust. In this project, the community partner agency perceived the value of partnering with an academic research institution to foster relevant research studies by better training of research assistants. This particular training approach was intentionally designed to not be linked to recruitment for any one specific research project. However, others have demonstrated that collaborations to train CHWs on specific research protocols can lead to broad levels of mutual trust (Arvey, Fernandez, LaRue, & Bartholomew, 2012; St John et al., 2013).
As this was a pilot project, it was not designed to assess benefits to the community-based health agency. It remains to be tested if research readiness will increase in the long term or whether investigators will be more receptive to future collaborations with this agency because of its trained CHWs. Similarly, further study is needed to determine if consequences of such a project will include improved research designs for various types of health research, such as clinical drug trials, behavioral interventions, and observational studies.
Conclusion
An interactive course in research fundamentals for CHWs is feasible, with much to be gained: improved communication between researchers and a community, reduced barriers to research participation among underrepresented populations, customized research protocols and informed consent compatible with the communities’ understanding and appreciation of research, and enhanced awareness of the applicability of evidence-based practices to benefit members of the community. The course format is readily adaptable, making it useful to other investigators and communities where CHWs are part of the health system. Next, steps should include summative evaluations of short- and long-term course effectiveness.
Footnotes
The project described was partially supported by the National Institutes of Health (NIH) Grant UL RR031980 for Years 1 and 2 of Clinical and Translational Science Awards (CTSA) funding and/or UL1TR000100 during Year 3 and beyond of CTSA funding.
The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.