Introduction
Community Scientist Programs (CSPs) have been valuable in increasing community engagement, knowledge, and awareness of research, trust in scientific research, and the quality of research conducted. CSPs help train community advocates in cancer research, providing them with necessary tools to help bridge the gap between scientists and the community at large. Trained community scientists can contribute to cancer research by serving on advisory boards, disseminating information, helping recruit participants, and serving as a bi-directional voice of the community in research. The application of a CSP model within diverse communities is relatively recent with a small body of peer-reviewed literature describing programs that share evidenced-based information about cancer prevention, screening, and treatment, tailored to populations at-risk for cancer [
1,
2]. The existing evidence shows that outreach and education programs on cancer prevention, screening, and treatment are helpful in educating community members about the risks and approaches involved with various cancers [
3]. Sharing information with the broader population of individuals who are at-risk but not yet diagnosed with cancer, in and throughout our communities, can be challenging, due to negative attitudes about screening modalities and fear of cancer diagnoses. In addition, it can be challenging to engage the community at large in cancer research, due to negative attitudes about research, and ineffective communication about how and why it is beneficial for them to participate in research as healthy volunteers [
4]. Therefore, developing and implementing CSPs to bridge the gap between researchers and diverse populations at increased risk of developing and dying from cancer related diseases is a public health priority. CSP graduates will facilitate dissemination of cancer research information and participation of diverse communities in cancer research so that they can be represented in novel discoveries. Implementing cancer-related CSPs in California (CA) and in Florida (FL) is of high importance given existing cancer-related health disparities coupled with the large population of Black/African American (B/AA) and Hispanic/Latino/a (H/L) persons living in these states. In 2022, 7.1% (2.8 million) and 39% (15.6 million) of the CA population identified as (B/AA) or H/L, respectively; whereas in FL, 18.2% (3.8 million) and 25.6% (5.66 million) of the population identified as either B/AA or H/L. Altogether, these two states have greater representation of H/L compared to the entire US population (18.2%), and FL has greater proportion of B/AA compared to the entire USA (14.1%) [
5‐
7]. Importantly, CA and FL ranked first and second in the USA respectively, for both annual number of new cancer cases and cancer deaths [
8]. Moreover, cancer is the leading cause of death among the H/L population, accounting for 20% of deaths [
9], whereas the B/AA population have the highest death rate and shortest survival of any racial/ethnic group in the USA for most cancers [
9].
Dissemination of cancer research and participation in cancer research among B/AA and H/L populations present several challenges, including structural barriers to participation (e.g., cost of time involved in participation; culturally inefficacious communication strategies; insufficient access to medical insurance/facilities; transportation barriers; and issues related to child care, culture, and fear), fatalistic attitudes about cancer prognosis, and mistrust of clinical trial and healthcare systems [
10,
11]. Therefore, CSP uniquely tailored to these two communities offer great promise for impact.
There is an increase in community-level engagement models being used [
12] to create social and behavioral change on a community level, for example, training models for physicians and community health workers (CHWs) [
13‐
15]. Newer models seek to train other key stakeholders such as patient advocates [
16], who can share their voices, or “advocate” for cancer research, prevention, and treatment [
16] which has contributed to a more patient-centered, patient-valued approach to cancer treatment. And there are also research advocates who serve as (1) a link between patients and scientific research, (2) help patients understand scientific information and research findings that may help them, (3) help researchers understand patient perspectives on research activities as members of scientific advisory boards and committees, (4) teach patients and their families about clinical trials, and (5) recruit patients to clinical trials [
17]. Research advocates with training in the complex field of clinical research make powerful agents against misunderstanding, misinformation, and mistrust. Therefore, research advocates can be a key connection between individuals within the community and scientists.
With these ideas and needs in mind, we developed the CaRE
2 Health Equity Center Community Scientist Research Advocacy (CSRA) training program, with the goals of informing, educating, and empowering community members to become cancer research advocates in FL and CA. The CSRA program is modeled after a successful educational program from the American Association for Cancer Research (AACR), the Scientist→Survivor Program (SSP) [
18], and on the
Diffusion of Innovation Theory (DIT) [
19], which postulates that the more information is shared/disseminated, the more likely it is believed and eventually enacted. Evidence shows that crucial facilitators to effective cancer education and cancer research recruitment require communication modalities that are culturally appropriate, validation by members of the community’s social network as credible and trustworthy, and strong motivational messaging (i.e., why participation is beneficial
to them) [
20‐
23]. Our CSRA program has the goal of training these facilitators to create and sustain avenues to dismantle barriers between researchers and research advocates within our communities. In this study, we describe the CaRE
2 Health Equity Center’s CSRA program, share results from the 2022 CSRA cohort, and discuss CSRA’s utility as a model for cancer research advocacy. Implications and opportunities for improvement are discussed to assist with program evaluation for future cohorts and replicating this model in other communities with culturally similar demographics as CA and FL where the CSRA program was developed and implemented.
Discussion
We present implementation, evaluation results, and lessons learned for our first bicoastal, bilingual CSRA training program, conducted virtually in CA and FL. Whereas the CRSA program was initially designed as a hybrid virtual and in-person program, with experiential training and poster presentations, though, due to the COVID-19 pandemic, we were forced to implement it fully virtual, which enabled the simultaneous training of advocates in CA and FL. The CaRE2 Health Equity Center CSRA program was successful in increasing the number of trained community members to become advocates for cancer research. Altogether, to date, a total of 26 community members completed the CSRA program sessions in 2019 and 2022; and we will be graduating another cohort of 20 participants in August 2023.
For 2022, as a group, participants’ overall knowledge about cancer and cancer research changed positively, although changes were not statistically significant. We also observed a smaller proportion of the group with knowledge accuracy at the end of program compared to start, which was unexpected but may have related to loss of participants completing the unmatched post-survey. Similarly, the overall level of expectations at the start of the program changed, but not in a statistically significant manner, with some questions showing decreases at the end of program. One explanation for knowledge decreases or change in expectations by program end compared to program start and midway is that participants failed to recall what was learned several weeks prior. It also suggests that the questions were not optimally matched to the program content, which focused on ongoing research rather than cancer incidence, prevalence and mortality, screening, diagnosis, and treatment practices. Overall, these results suggest that we need to re-think the questions used to assess knowledge to better capture the unique content they are gaining in the program, as well as program expectations. Amy Leader [
17] points out that research programs have few measures for evaluating basic science/laboratory collaborations and more are focused on population science/public health interventions. Among those that do include metrics on research advocacy impact, most measure long-term outcomes and scientific impact, not the process of research advocacy or evaluation on community member impact. For these reasons, the CaRE
2 Center creates a research culture where the inclusion, training, and support of cancer research advocates are conducted and evaluated with the same priority as any other center activity, in the way of a true partnership.
Our CSRA model has several innovative aspects compared to other cancer community scientist programs [
15‐
17]. Having participants complete an “
advocacy project” was purposefully designed to (a) increase participants’ self-efficacy to be an advocate with “hands-on”/active planning and (b) leverage the CaRE
2 Health Equity Center’s reach, impact, and sustainability where advocates design and implement a project on cancer research being conducted within the center. Another innovation was the program delivery, with simultaneous, synchronous, and bilingual implementation in CA and in FL, focusing on two racial and ethnic populations. To meet the needs of these two populations, all content (e.g., didactic lectures and program materials) was in English and Spanish via translated materials or using synchronous translators, thus allowing monolingual Spanish-speaking participants (
N = 2) to fully participate. Also innovative was the fact that the program was implemented in a 100% virtual environment, which allowed for each participant to interact and subsequently present their cancer research advocacy projects bicoastally in FL and CA. Offering the CSRA program through a virtual environment allowed for increased participation and program completion across the three institutions’ bicoastal locations and allowed for interactions between cancer advocates across the two coasts. Finally, we highlight the innovation that the CSRA program faculty and staff provided mentorship and guidance to teams as they worked to complete their advocacy projects, such as inviting experts, promoting their advocacy projects, and identifying required resources from evidence-based resources (i.e., NCI, American Cancer Society).
Key strengths of the program include recruitment of participants that exceeded expectations, participation of guest speakers who presented on cancer research related topics, repeated evaluations focused on knowledge, and program expectations throughout the program. Importantly, all participants agreed that they would make a greater impact in their communities given their participation in the CSRA program. Moreover, the CSRA program advocates successfully implemented their advocacy projects. For example, two webinars with both CA and FL participant collaboration included Understanding Pancreatic Cancer (June 2022) and Breast Cancer Research (July 2022). Since our 2022 program, a program alumnus was selected to be a Breast Cancer Research Advocate for Susan G. Komen in Washington, DC, in June 2023 at the Advocacy Summit on Capitol Hill.
We recognize the opportunity to reassess our curriculum and evaluation processes to see a clearer trend within our program results about the overall program training approach. We recognize that a cohort of 20 participants is a limited number of respondents to detect significant differences in knowledge or program effectiveness and that our knowledge questions need to be more rigorous to avoid a ceiling effect at the beginning of the program, which reduces the potential to show a significant increase. Unfortunately, the cohort size is limited by grant funds and available team members. To achieve greater survey rigor, we will ask our didactic lecture speakers to provide learning objectives/goals and questions for their presentations, add questions related to our self-guided learning materials, and provide each participant with a code number to identify responses over time. Finally, we will assess each participant’s application, such as education level and primary language, to assure we are tailoring the content to the correct audience and using better targeted survey questions.
Implementation of the CSRA program was met with several challenges. For example, the COVID-19 pandemic introduced setbacks given that we were not able to offer the planned in-person experience in CaRE2 Center labs at respective institutions. Switching to a virtual platform required a learning curve among participants on how to use Zoom, including use by our Spanish translators. In addition, internet or Wi-Fi sometimes failed for CSRA program participants and faculty. Other challenges included time management across three bicoastal institutions in different time zones. Despite these challenges, the CaRE2 Health Equity Center CSRA Program is a unique and effective health promotion model where participants learn about cancer research. They also gain skills in planning, developing, and implementing an advocacy project, as well as presenting projects to their community members and cancer scientists. Another setback of our program results is attrition and/or not completing the surveys, which affected the analysis of the pre-knowledge survey (N = 20) and post-knowledge survey (N = 16). Moving forward, we plan to measure longitudinal reach and impact of CSRA alumni through biannual contact that assesses advocates’ ongoing cancer-related activities and involvement resulting from CSRA program completion.
We have taken our lessons learned to restructure our program for the new 2023 cohort, in hopes for a more accurate measurement of increase in knowledge and program expectations. We have additionally taken into consideration participant feedback from our program evaluation survey. As we evaluate our program further, we continue to include our Community Advisory Board in participant selection, as well as biostatistics experts in our ongoing program planning. To strengthen our program, we look to add the involvement of program alumni to help with feedback and evaluation for our program. These planned changes are consistent with the increased attention to patient public involvement (PPI) in research design and recruitment (i.e., gatekeepers) in cancer programs, which we may find useful as our program continues to develop and is evaluated each year [
25,
26].
A key recommendation for replication of our program is emphasizing the need to tailor the program to the population in the corresponding catchment area. This includes the use of simultaneous session translators, material translations, and materials that accompany the training, as well as consideration of literacy level of participants. Other recommendations include, effective evaluation methods, advance program planning, time management, and a well-versed implementation team. Our program was bicoastally implemented, which takes successful coordination as well as considering the program teams’ different time zones. We recommend obtaining materials from an accredited institution(s) or organization(s) via online, in-person, or mail, such as but not limited to the NCI or American Cancer Society, that best serves your program structure and participants.
In summary, we present an innovative community scientist research advocacy training program, uniquely developed for B/AA and H/L communities with a focus on disseminating information about cancer health disparities in these communities. We achieved our goal to train a workforce of trained advocates that can serve as a bidirectional bridge between cancer scientists and the community at large. Our program can be adapted to serve the needs of different communities.
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