Introduction

Cancer is the second leading cause of death in the US, with over 1.9 million new cancer cases and over 600,000 cancer related deaths estimated to occur in 2022 [1, 2]. Basic science research is critical for understanding disease pathogenesis and biological mechanisms that are essential to advances in cancer prevention, diagnoses and treatment. This valuable scientific evidence fuels discovery and translates to improvements in precision therapies, elucidation of cancer risk and quality survivorship. Notably, basic science research is most often conducted in laboratories that does not provide space for community observation or input; these research processes are therefore mysterious and often disconnected from the communities they intend to benefit. This disconnection may contribute to community mistrust and importantly, slow uptake of important treatments, vaccines, and other therapies that could contribute to improvements in the health of the general public. One important example of this it the slow uptake of the vaccine for COVID-19 in underrepresented and minoritized communities. This critical scientific discovery was viewed with skepticism by members of certain minoritized groups [3, 4]. The process by which the vaccine was developed was perhaps not transparent and based on historical traumas suffered within the groups, uptake was slower [3]. This paper presents strategies to demystify basic science processes and discoveries by building capacity for collaboration between basic scientists and community members. This paper outlines the strategies used to connect basic scientists in cancer biology with Hispanic community members served by the University of Arizona Cancer Center (UACC).

The University of Arizona Cancer Center is the only comprehensive cancer center headquartered in the state of Arizona. UACC’s catchment area includes the five southernmost counties of Arizona, with four of those counties bordering Mexico. This area accounts for approximately 26% of the state’s population and is 40% Hispanic [5, 6]. The Hispanic population in the catchment area faces a number of challenges in terms of health and social disparities. The Behavioral Risk Factor Surveillance System indicates that the obesity prevalence in 2021 among the Arizona Hispanic population is 35.8% compared to 31.3% in the state and 33.9% in the U.S [7]. Additionally, 21.6% of the Hispanic community in Arizona do not have some form of insurance compared to 7.1% in the U.S.; and 13.2% of the Arizona Hispanic community is college educated compared to 28.9% in the U.S [7]. The Hispanic population in Arizona also face a number of challenges that place them at increased risk for cancer, including lower than optimal screening rates for certain cancers including cervical cancer (75.3% vs 76.6% for non-Hispanic whites) and colorectal cancer (61% vs 76.3% for non-Hispanic whites) [8, 9]. Given the challenges faced by this community and with four of the five counties in the catchment area being on the U.S.-Mexico border, a collaborative relationship with UACC is foundational to the elimination of the disparities faced.

In 2020, UACC was recipient of a National Cancer Institute P30 supplement grant (P30CA023074) to establish collaborations between community members and basic scientists. The leaders of the Office of Community Outreach and Engagement and the Cancer Biology program led efforts to facilitate equitable, collaborative, and sustainable relationships between community stakeholders and basic scientists, and ultimately to decrease cancer disparities among Hispanics in the UACC catchment area. The resulting program, Research Outreach of Southern Arizona (ROSA), was collaboratively developed. Here we discuss strategies utilized by this unique and collaborative program to build capacity for basic scientists and communities. We outline strategies used, the evolution of those strategies in response to feedback from both scientific and lay community members, outcomes and lessons learned. These strategies include the ROSA working group, the ambassador program, the scientific cafés and a community-based survey. While the strategies are presented here in a linear fashion, most of them occurred concurrently with one another.

Rosa program strategies

Strategy 1: ROSA working group

The initial step in building capacity for this collaborative relationship was the formation of a guiding working group. This group was the foundational advisory body from which all decisions regarding the direction of the program emanated. The mission of the working group of community and scientist stakeholder was to guide the vision of the program and provide input and feedback on the different program components. The working group had three primary and specific goals. First, they were tasked with reviewing and providing feedback on a community survey to assess cancer biology knowledge and openness to research participation. Second, the working group was responsible for vetting and evaluating the scientific research proposals that Basic Scientists would develop. The information gleaned from the community survey and scientific cafés would help inform the working group’s third aim of selecting a community-engaged pilot research project.

Intentional action was taken to ensure the working group was representative of scientific and community interests. Membership of the working group drew from UACC scientists, bilingual (Spanish and English) community members, stakeholders from the UACC Community Advisory Board, and representatives from three local federally qualified health centers (El Rio Health, Marana Health Center, and Clínica Amistad) that serve a large percentage of the Hispanic community in the catchment area. The initial working group consisted of 17 members (Table 1). Members who were non-University of Arizona employees received one-time taxable stipend of $1000. The working group’s inaugural meeting was in April 2021 with the initial plan for them to convene monthly for approximately six months and as long as the mission of the group was relevant.

Table 1 Composition of ROSA working group
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Working group activities

An initial task of the working group—and essential to establishing buy-in for the program—was naming and branding the program for community involvement. The group participated in a community wide process to name the program based on its stated goal of fostering collaboration to ensure that scientific research was conducted in a community relevant way. Based on this input, the program became known as ROSA (Research Outreach for Southern Arizona). Branding of the ROSA program also included the development of a logo. At the suggestion of the working group, this logo was developed through a community call for design ideas. We received a variety of entries and the working group participated in the final selection, which was submitted by a local artist. These initial activities anchored the working group in being community centric, collaborating across ideas, and reaching consensus through commonalities.

The working group provided representative voices of scientists and community members in a setting for bi-directional engagement and exchange. Adapting to the flow of the process, the working group ultimately convened every two to three months, for approximately 12 months. They met both face to face and by zoom and they used WhatsApp to communicate. Working group meetings were facilitated by the ROSA project manager in collaboration with UACC COE leadership. Preliminary agendas were developed and distributed to the working group prior to convened meetings. Zoom meetings were recorded and minutes were taken to capture discussion points and action steps; meeting minutes and the zoom recording link were sent to the working group after the meeting.

During the tenure of the working groups, they successfully informed the development of the community survey that was later deployed throughout the UACC catchment area. The idea of the survey was generated from early working group discussions. After establishing the purpose of the survey (discussed in a later section of the paper), overall input was solicited regarding the types of questions to ask in the survey. Taking this information, the UACC program leader for ROSA developed the preliminary survey questions to identify priorities for basic science research within the Hispanic community. The questions were refined through an iterative process before being finalized for the survey. The working group also collaboratively developed a deployment plan and dissemination strategy that was sensitive to the community and maximized survey uptake; as surveys were distributed, the working group gave input to further refine survey dissemination.

Finally, the working group was foundational in the development of the scientific cafés (discussed in a later section of the paper), providing valuable insight and considerations into how they are executed. They gave input on the delivery method of the information and importantly provided feedback to the scientist on how the presentation of basic science information might best be received by Hispanic community members. The scientist would give a short PowerPoint presentation to the working group and thereafter, there working group would provide slide by slide suggestions for both the content of the slides and the accompanying narrative. Suggestions from the working group included the use of pictures and storytelling to illustrate major themes. As the focus was on Hispanic communities, examples that were culturally relevant were explored and added to scientific stories to make them more relevant for the audience.

Working group lessons learned

The working group faced several challenges inherent in bringing together basic scientists with community members. There were differences in opinions that were largely based on language differences. Basic scientists speak a common language that needed to be translated to lay language. This challenge became easier as trust developed in the group. Having a common goal and respectful listening made the transition to lay language easier. Secondly, the meetings were during a time when we needed to engage primarily by zoom due to the COVID-19 pandemic. Most of the group was willing to make this adjustment and we were able to successfully meet. When we needed input, the group chose to use the WhatsApp as a primary means of communication. This took work with our scientist who were not familiar with the social media platform. Our final challenge related to one of our working group members having a lack of proper documentation to receive compensation due to their immigration status. We had to address this at a university level as this was an issue that would be faced with other community members. While providing privacy for the working group member, we were able to launch a discussion about participant payment and requirements for citizenship that both enlightened our larger community and provided a path forward for giving voice to important perspectives from the immigrant community.

Strategy 2: ROSA ambassador program

To further facilitate bi-directional learning opportunities, the ROSA Ambassador Program was developed to engage Hispanic community members and bilingual/bicultural undergraduate students in the research process and help facilitate community outreach and engagement with UACC. We envisioned this aspect of the program to embody the dictionary definition of what an ambassador does: “a person who represents, speaks for, or advertises a particular organization, group of people, activity, or brand” [10]. The community ambassadors represented the UACC within the community and were able to translate what the basic scientists were working on to community members in a way that could make community members more comfortable and interested in learning more. Ambassadors developed a working knowledge of cancer science which was important when they represented UACC and community events. Additionally, they would help basic scientists to translate scientific advances and terminology into lay language. Importantly, ambassadors are gatekeepers to communities. They helped UACC to understand the community in the catchment and to reach them in ways that only members of that community could. Community ambassadors committed to 4 h a month for 6 months and were provided a $3600 stipend. Each community ambassador was also paired with a student ambassador whom they met with twice a month to provide feedback and input on ongoing research activities.

Student ambassadors also represented the Hispanic community from an academic perspective outside of cancer, allowing them to translate and represent advances in basic science across disciplines. Students represented engineering and public health and were interested in engaging communities in science. The premise of the ambassador program was to facilitate the expansion of our cancer science across scientific and lay communities, in new and creative ways that could open bidirectional and innovative dialogues and allow other disciplines to engage in community-engaged research with our basic scientists. Student ambassadors committed 10 h a week for 7 months to the program and provided a $5100 stipend. They also received one-on-one mentoring from COE and the Basic Science Program leadership and were engaged in the development and recruitment of the community survey.

A six-month curriculum was developed in collaboration with the UACC Cancer Research Training and Education Coordination (CRTEC) office that trained all community and student ambassadors in a range of topics including social determinants of health, research methodology, cancer biology basics, community-based research, cultural competency, and health literacy (Table 2). In addition to group discussion sessions, the curriculum content was delivered in various formats including required articles readings and videos. All material was made available in Spanish (either translated or with closed captions for videos). The ambassadors training also included sessions on research presentation skills.

Table 2 ROSA ambassador program curriculum topics
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Additionally, monthly “Meet the Scientist” events were held for all the ambassadors to engage with basic scientists. These sessions were recorded and used to help the scientists to develop presentation skills based on feedback from the various constituents. During onboarding and orientation, all the ambassadors completed a baseline assessment to gauge their knowledge and abilities in cancer research. Upon completion of the six months training program, the ambassadors completed a post-completion survey and presented an oral poster or presentation about their experiences. The baseline and post-completion surveys asked ambassadors to evaluate on a five-point likert scale their confidence in knowledge about (1) the research process (2) clinical trials (3) cancer risk factors and screening (4)general research ethics and 5) community-engaged research methods; the surveys also assessed confidence in ability to (1) promote research in underrepresented communities (2) provide feedback on basic science projects (3) give presentations about research and 4) teach others in their community about research methods.

Ambassador program outcomes and lessons learned

Four community ambassadors and four student ambassadors participated in the first year of the ROSA program. All eight community ambassadors completed the baseline survey; all four student ambassadors and two community ambassadors completed the post-completion survey. Results from baseline and post-completion assessments revealed increased knowledge about community-engaged research methods and increased confidence in ability to provide feedback on basic science projects. Feedback received from the ambassadors included:

There were things that, if I didn't quite understand, or if they were not clear to me when I was listening to the explanation in English, that someone in Spanish could reiterate. So that definitely was a plus. -Community Ambassador

The 1-on-1 meetings were my favorite part of this program. I feel like they all went great, and my ambassador and I learned so much from each other. -Student Ambassador

The primary challenge the Ambassador Program revealed was the limited availability of Spanish-speaking scientists available to speak with monolingual community members. Feedback from the “Meet the Scientist” events of the Ambassador Program highlighted this basic issue in communication between the community and the scientist. Having bilingual student ambassadors aided conversations about basic science topics. Given the aforementioned limited availability of Spanish-speaking basic scientists, interpreters were needed when engaging with monolingual Spanish-speaking community members. The basic scientists who participated in these events felt that there was a sense of discontinuity in the presentation when alternating between English and Spanish. Similarly, there was a challenge with what information got translated; the scientists would share information beyond what was provided on the slides but often the translators would translate only the slide content. It was suggested that for future events such as the scientific cafés, the presentations may be best to be in Spanish or English only, with the question-and-answer portion then having interpretation. Additionally, basic scientists noted the need to ensure that information was accessible, necessitating the need to minimize and/or reframe technical terminology. The lessons from the “Meet the Scientist” events provided a helpful foundational framework to develop the scientific cafés.

Strategy 3: ROSA scientific cafés

ROSA scientific cafés were posited as the penultimate avenue to bring basic scientists and their work into the community. The overall goal of the ROSA scientific cafés is to provide an opportunity for basic scientists to present their research and proposals to the community and community members would be able to provide feedback, ask questions and offer input on how the research is best conducted in and with the community. Realizing the need to build interest and gain traction from the community for these events, the first couple scientific events were to be informational; scientists would be available to speak about their research, answer questions, and learn from community members about their cancer priorities.

As mentioned, the preparation for these events included having scientists practice with feedback from both the working group and ambassadors. In addition, several meetings occurred between the scientists and others to aid their preparation for the event. In the first meeting with the scientist, the ROSA project administrator and the COE Associate Director reviewed the logistics for the event and provided details on any previous events on what worked well and what did not. This first meeting also served to gauge what the scientist would potentially talk about and gave the scientist an opportunity to begin thinking about how to present their work in the most impactful and digestible way. A few weeks later, a second meeting was held to discuss in detail what the scientist planned on presenting. This conversation included details on how to deliver content, using accessible language and how to address the audience while keeping them engaged. The final meeting with the scientist was held 1–2 weeks prior to the event for a dress rehearsal of their presentation, confirm event logistics and address any additional questions the scientist may have.

At the time of this manuscript, two cafés have been hosted (June 2022 and October 2022). The cafés are intentionally designed to accommodate 25–35 people to best foster dialogue and conversation between the scientist and community members. Anyone from the community was invited to attend the cafes; attendees were recruited via flyers distributed digitally and advertised at partnering organizations and local establishments; the events were also promoted by COE’s Community Health Educators at community outreach events. The pilot café was held with the UACC Director who presented her research on genetic cell biology and also spoke more broadly about the cancer center and its role in the community. This inaugural café had approximately 25 people present with some of the participants being more comfortable with monolingual Spanish. The scientific presentation was delivered in English with Spanish translation provided for all portions of the event by a medical physician. The second café was with a UACC physician scientist who spoke about her work on breast cancer and its correlation to bone processes impacted by the plant content in one’s diet. The presentation was delivered solely in English with no translation provided. There were approximately 30 people in attendance. Both scientific cafés started in the late morning and lasted about 1.5 h, which included 30 min of breakfast and networking.

The selection of a venue of the scientific cafés strategically and thoughtfully determined. Endeavoring to have as many aspects as possible be invested into the local community—including the money spent towards events—preference is given to local vendors who ideally are also a part of the Hispanic community. In the spirit the ROSA program’s goal of collaboration, we also endeavor to build relationships and partnership with the different entities involved in the program including vendors. The venue of the inaugural café was suggested by working group members. The locally owned Mexican restaurant selected was located in a neighborhood with a denser Hispanic population, had a good reputation among the community and was easily accessible for the event’s audience. The venue for the second café was suggested by members of the COE Community Advisory Board. It too was a locally owned Hispanic restaurant situated in a Hispanic neighborhood of the community. During the selection process of venues, staff from UACC visit each location in person and meet with the owner to discuss the feasibility, logistics and food catering options. Some venues have their own catering services while other require one to be acquired separately.

Post-event surveys were collected to determine if community members were satisfied with the topics, improvement of cancer research knowledge, and to provide feedback for future café events. Across both scientific cafés held, majority of attendees (42%) heard of the event from friends and family. More than 80% of attendees were satisfied with the event and felt their knowledge of cancer research had improved and 89% of attendees would register for a café again in the future. Future café topics suggested by attendees included address other cancers and preventative practices.

Scientific café lessons learned

One of the challenges faced when conducting scientific cafés in the Hispanic community has been language. Many of the attendees feel more comfortable receiving information in Spanish and the UACC lacks basic scientist who are able to communicate in Spanish, necessitating some form of interpretation for the audience. This was attempted at the first café but while some participants appreciated the Spanish interpretation others found the alternation between languages distracting. Additionally, some of the dual-lingual attendees noted that the interpreter was not translating everything the scientist said as was expressed and sometimes added their own insight beyond what was stated.

As anticipated, another challenge was the scientist comfort level and their ability to communicate in an effective way with a lay audience. The second café was shifted to be more conversational and casual in which the scientist used props to demonstrate and visualize their research for the audience; this was well received by the audience. We allowed participants to ask questions throughout the session rather than just at the end to better facilitate their understanding. Furthermore, given the challenges with interpretation, the second café was an English-only event, with plans for a Spanish-only event in the future. For future events, we also plan to provide on-site interpretation services that allows for real-time translation delivered through headphones, mitigating the need to alternative between languages.

Finally, we continue to learn lessons regarding preparation before the cafés. After each café, short evaluations are completed by attendees. A debriefing meeting is then convened with the logistic team, the working group, and members of the basic science program to assess the café outcomes with the intended goals. While the feedback from the evaluations indicates that there is increased knowledge and awareness related to basic science, they also reveal areas for improvement in communication. We are faced with understanding what the optimal preparation for basic scientists is for meeting with groups of community members to disseminate scientific advances and the current state of science. Some scientists are more prepared than others and understanding the baseline from which the individual scientists is operating has been an important lesson for the COE team. As we listen to our audience for the cafés and debrief about the events, we continue to evolve this and other processes to be responsive to critical input. These initial scientific cafés were aimed to build interest and gain traction for such events from the community and we have received an overall favorable response from attendees. We are developing plans to evaluate the presenting researcher more systematically and better integrate all feedback from the attendees and scientists to continually enhance the scientific cafes for all stakeholders. In the future, the scientific cafés will also be a forum for basic scientists to discuss potential study proposals and obtain feedback from community members on research to be conducted in and with the community.

Strategy 4: ROSA community survey

The final strategy being used to anchor the collaboration between scientists and community members is a community survey that was designed to elucidate community priorities and examine perceptions and knowledge of basic science and willingness to participate in research among Hispanic community members. Ultimately, the survey would serve to inform the development of a community-driven basic science research project, anchored in the community’s desires, identified priorities, and how they best engage with basic science research.

The 33-item survey was developed in a collaborative effort between the ROSA working group and COE research staff, with support from the ROSA ambassadors and COE Community Advisory Board. Input from each of these groups was solicited in an iterative manner until questions were finalized. The survey was beta tested with both Spanish and English-speaking community members and the final version was then vetted by the working group. Eligibility criteria to participate in the study was individuals who had to be Hispanic/Latino residents, be 18 years or older, and live in one of the five UACC catchment area counties. The target sample size is 300 participants, each of whom would be compensated $20 for their time. The survey was available in English and Spanish and administered over the phone. Participants for the study were recruited with assistance from UACC Health Educators at community health fairs, local swap meets, and social media. This study was reviewed by the Institutional Review Board at the University of Arizona (ID: 2010166430).

From the advice of the working group, participants were recruited from tabling at local community events and flyers were also distributed at community organizations. Interested participants completed an online interest form that confirmed their eligibility and gathered information on the best time to be contacted to complete the survey. Participants could also call a phone number provided to express their interest and research staff would follow up to commence the process.

Community survey preliminary findings

The ROSA survey was launched in October 2021. Over a 10-month period, 372 people expressed interest in the survey. However, only 78 people were successfully contacted by phone and eligible to complete the survey, resulting in only 62 people completing the survey. Preliminary results from those persons show that the median age of participants was 45 years old with 86.4% identifying as women. Approximately 60% of participants were not born in the U.S while a separate 54.2% are second-generation born, where at least one parent was born in another country. In the section of the survey regarding opinions of their community’s health, 59.3% of participants selected cancer as one of the top three most important illnesses, while financial concern was the top barrier that impacts their health. Additionally, while most participants are confident in their knowledge about cancer and basic science, a knowledge gap has been identified when asked about their understanding on the scientific research process.

In the larger cancer biology research section of the survey, at least 70% of participants collectively find all topics of cancer biology interesting (i.e. genetics, microbiome, and lifestyle). Interestingly, more than 75% of all participants have no experience with cancer research or research in general. As for their willingness to participate in cancer biology research, 69% see themselves contributing to a study while those that stated “no” or “unsure” identified the involvement of invasive procedures and privacy/confidentiality risks as the top potential reasons their community or themselves would not participate. Contrastingly, 96.6% of participants, regardless of willingness to participate in research, are willing to provide at least a saliva or cheek swab sample to studies; with variation in inclination to provide other tissue sample such as urine and surgical issue. The survey concludes with open-ended questions that require further analysis is uncovering what the community would like to learn from researchers, what they wish researchers knew about their community, and advising on how scientists can reach and engage with the community.

Community survey lessons learned

We experienced a very low completion rate for this survey largely attributable to the survey delivery format. With the survey being delivered by phone, it took approximately 30–45 min to complete the process, including obtaining informed consent. Challenges were noted with getting in contact with participants after the completion of the interest form, despite participants specifying preferred times to be contacted. Furthermore, there were instances in which after successful contact was made, some participants were unavailable to complete the survey at that time called and rescheduled follow-up calls would be unsuccessful.

Discussion

The ROSA program has been included as a core part of COE at the UACC. It addresses one of the main specific aims of COE, which is to facilitate and advance research and clinical trials that are relevant to the persons in the catchment area of UACC. Each of the strategies that have been outlined here have evolved to be more effective and continue to be adjusted to meet the evolving needs of the scientific and lay communities. The working group, in response to lessons learned, has become a permanent part of the COE Community Advisory Board and is now a standing subcommittee. This is the basis for interactions with our community members and they meet regularly with our scientists and other COE team members to give advice on how to best move forward community facing initiatives. Working group members are paid through the Community Advisory Board mechanism and give quarterly updates on how they are moving this critical work forward.

The student ROSA ambassador program has been integrated into the UACC training program and we have jointly developed a standing curriculum from which students from other disciplines can learn about the conduct of community-engaged research across the spectrum. Each of the students is expected to develop a project that they spend the semester working on that occurs at the intersection of basic science and community engagement. The ambassadors are integral parts of scientific cafés and COE team, executing our vision of connecting the UACC basic science community, larger University of Arizona community and broader general community.

The community ambassadors are also a permanent component of the COE team. They have been carefully chosen and serve two-year terms. They have represented UACC in a number of community settings such as health fairs, partner events, and at the scientific cafés. They are compensated monthly and participate in cancer center events such as scientific retreats, strategic planning and other events where the science of the cancer center is being discussed. They are effective ambassadors and are recognized and branded by the community as associated being with UACC. An example of their essential presence is that one our community ambassadors is a member of the Tohono O’dham Nation and has given tribal blessings at numerous cancer center events. This has increased the cancer center members cultural humility and allows more bidirectional and common language exchanges for all members of the community.

We have learned valuable lessons about the conduct of the survey in the Hispanic community in southern Arizona. While these lessons may be universal, they are also likely specific to regional and local responses. We have revisited and streamlined the survey and the methods of delivery with input from the COE Community Advisory Board. The survey is currently being relaunched by the COE team responsible for leading the population health assessment at UACC. This team has an arsenal of strategies for effective roll out of surveys and we anticipate that this will move forward this foundational part of our community engagement and impact in a much more effective way.

Finally, the scientific cafés are the ultimate strategy being used to introduce scientists to communities. The evolution of the cafés has been responsive to evaluation of both process and outcome.. In response to these revelations, we have initiated the following actions: (1) a survey of basic scientists in the program to better understand their knowledge base; (2) exploration of professional interpretation services; (3) mandatory readings regarding community engagement for any scientist interested in being a part of the café series; (4) open journal clubs where scientists and COE team members discuss strategies to engage communities. The next planned café will occur in collaboration with the Pascua Yaqui tribe, at the request of tribal members. This opportunity will facilitate implementation of many of the new strategies and with each café held, we will continue to explore ways to improve the experience for both the scientists and community.

Conclusion

The current scientific dialogue, particularly that occurring amongst the basic science community, has minimally included the perspective or input of the lay community. The brilliant ideas and discoveries that result from scientific conversations have been limited in their impact and scope due to limited community engagement in the dialogue. This paper presents a number of ways to expand the dialogue to include the voices of those in communities that scientific discoveries are delivered to. The strategies discussed are nascent and ever evolving but present an opportunity to develop a common language and shared space for dialogue; they also foster the discovery of respectful ways to introduce ideas and to demystify the research processes by which scientific ideas become a part of evidence-based practice. The strategies presented may be part of an overarching strategy by which we eliminate disparities in the health of the most vulnerable communities. They ultimately also have potential for being the platform from which we launch a new paradigm in cancer research, one that is both collaborative and transformative.