Abstract
Few studies provide insights on how to incorporate community members’ perspectives of genomic research during the early phases of study development. Engaging with community members early and consistently throughout the research lifecycle could help identify and mitigate barriers to genomic research participation, particularly among groups with rare and understudied cancers. Methods: The Washington University Participant Engagement and Cancer Genome Sequencing (WU-PE-CGS) study formed a Participant Engagement Advisory Board (PEAB) consisting of patients, patient advocates, and patient advocacy organizations who represented the three understudied cancer populations: cholangiocarcinoma, early-onset colorectal cancer in Black Americans, and multiple myeloma in Black Americans. PEAB members were involved in PE-CGS from the time of the grant submission and provided input on key study procedures by participating in monthly project meetings and serving on the leadership team. PEAB recommendations are described in this process paper. Results: The PEAB provided key feedback on recruitment, consent, and survey development. Recruitment optimization focused on making the script more concise, tailoring to participant’s locale, and providing clearer participation expectations. Consent improvements prioritized key information, addressed data protection, and clarified the process of returning genetic results. Survey enhancements included refining scientific terminology and ensuring inclusivity across the cancer continuum. Conclusions: The PEAB provided valuable feedback that improved the development and implementation of WU-PE-CGS research processes. Incorporating the PEAB’s suggestions helped ensure that patients with rare and understudied cancers were successfully enrolled into the WU-PE-CGS. The PEAB will continue to contribute throughout all study phases.
1. Introduction
The underrepresentation of racially diverse participants in cancer genetics and genomics research is a longstanding issue. For example, 77% of the tumor samples in The Cancer Genome Atlas (TCGA) were from White participants, with significant underrepresentation of Asian and Hispanic participants compared to the relative proportion of the U.S. population []. The lack of diversity in genomic studies is also captured by the GWAS Diversity Monitor, a tool developed to track the total number of participants across all published genome-wide association studies (GWAS) []. As of October 2024, the tool showed that 94.5% of GWAS participants had genetic similarity to European ancestral groups []. The next largest participant group (3.9%) had genetic similarity to Asian groups, followed by participants with genetic similarity to African groups (0.6%). The stark overrepresentation of White participants and those most genetically similar to European ancestral groups means that understudied population groups may not be afforded the potential benefits of genomic research, including identification of genetic susceptibility variants, clinically actionable mutations, and targeted therapeutic opportunities []. This also limits scientific knowledge of the range of genetic variants and somatic mutations that may influence cancer development and survival.
Community engagement is a strategy to co-design studies and recruitment strategies that increase trust and promote opportunities for research participation []. These strategies comprise a continuum of research activities that promote shared priorities, mutual respect and trust, and shared decision-making among academic researchers and non-academic community members (hereafter termed “community members”). Community engagement is a well-established set of approaches necessary for considering ethical issues in genomics research, enhancing recruitment of underrepresented populations, and reducing health disparities []. The National Academies Roundtable on Genomics and Precision Health, the American Society of Human Genetics, in addition to ongoing genetic consortia including the Clinical Sequencing Evidence-Generating Research (CSER) and Electronic Medical Records and Genomic (eMERGE) network, call for community-engaged research approaches to make genomics research more equitable and increase participation of underrepresented groups [,,,,,,,]. They also recognize that community-engaged research can go beyond recruitment of underrepresented groups by incorporating community partners across several stages during and after the research study. However, as their reports allude to, few cancer genomics studies have yet to demonstrate how to use such community-engaged research processes to address these goals. Additionally, the literature on the use and success of community-engaged research processes in guiding large-scale cancer genomics research studies is limited.
The Cancer Moonshot Initiative was established in 2016 as a federal program to advance cancer research []. As part of the Moonshot Initiative’s goal to accomplish this through a focus on patient engagement, the Participant Engagement and Cancer Genomic Sequencing Network was funded to support five centers in this mission. The Washington University Participant Engagement and Cancer Genome Sequencing (WU-PE-CGS) is one of these centers and is focused on recruiting participants with cholangiocarcinoma, multiple myeloma among Black Americans, or early-onset colorectal cancer among Black Americans. Importantly, these cancers are rare or understudied and also reflect racial disparities in incidence and outcomes [,,,,,,]. Additionally, the incidence of these three cancer types has increased over the past several decades. For multiple myeloma and early-onset colorectal cancer, incidence and mortality rates are significantly higher among African Americans than White Americans, and the reasons underlying these patterns are largely unknown [,,,]. To address these important knowledge gaps, the WU-PE-CGS formalized a community advisory board of non-academic community members to enhance study recruitment, consent, and survey design early in the research study design and data collection phases. This process paper provides a detailed description of the ways in which the WU-PE-CGS community advisory board and research team engaged in processes of research design and decision-making based on the community advisory board’s feedback. To date few studies have operationalized community engagement in cancer genomics specifically for rare cancer populations, and even fewer have documented their processes in detail.
2. Methods
2.1. Overview of the Participation Engagement Advisory Board (PEAB)
The WU-PE-CGS principal investigators established the Participant Engagement Advisory Board (PEAB) by emailing membership invitations to patients, patient advocates, and patient advocacy organizations who represented the three PE-CGS-focused populations—or those more broadly engaged in health disparities and rare diseases work. All invited individuals were required to be 18 years or older; some were a part of longstanding partnerships with WU-PE-CGS investigators, while others were newly invited for the purpose of the WU-PE-CGS. The composition of the PEAB was designed to represent all three cancer types included in this study (cholangiocarcinoma, multiple myeloma, and colorectal cancer). The PEAB initially comprised five members, and the number of members has fluctuated between five and eight members over the four years of the study. Three members withdrew because they were no longer a part of the partner organization or felt they no longer had time to participate.
The PEAB is a sub-unit within the Engagement Optimization Unit (EOU), a team focused on implementing and evaluating patient engagement approaches across the study. PEAB members were involved in the WU-PE-CGS at the time of grant submission, providing letters of support for the work of the investigative team. This study defined engagement with the PEAB as opportunities where PEAB members collaborated with the investigative team to provide input on PE-CGS processes, especially recruitment, informed consent, and survey development. Engagement primarily occurred through virtual PEAB monthly meetings beginning in April 2022 which are ongoing. PEAB members were also invited to engage in virtual Investigator Leadership meetings, which also occurred once per month, and addressed broader updates and challenges across the WU-PE-CGS units. PEAB members were compensated hourly for attending meetings and reviewing study materials.
2.2. PEAB Engagement Processes
Engagement with the PEAB followed principles of community-based participatory research (CBPR). An EOU member facilitated PEAB meetings in a semi-structured format and focused on engaging PEAB members in reviewing the following materials during different meetings: study recruitment phone script, study recruitment flyer, informed consent document, and participant baseline survey. The EOU team described the goal of the meeting and facilitated, in detail, discussion on the reasons to change or not to change aspects of the study process or documents. PEAB members provided verbal and/or written feedback on documents drafted by the investigative team. PEAB members were encouraged to use the chat function in Zoom and send written follow-up comments via email. EOU staff audio-recorded each meeting and documented feedback through written notetaking.
In a systematic-phased process, the EOU team edited materials based on PEAB suggestions, and shared the revised materials with the PEAB for additional feedback. Phase I: the PEAB were introduced to the study process of interest (e.g., recruitment, consent, or survey) and provided initial feedback and reactions; Phase II: the materials were designed and developed in conjunction with PEAB recommendations, existing literature, and IRB requirements; Phase III: the PEAB provided additional refinements to the developed study materials; Phase IV: the finalized materials were shared with the PEAB and implemented within the study. Any recommendations that could not be implemented were clearly explained by the study team along with the rationale for not implementing the change. EOU staff tracked the PEAB’s suggestions and any actions taken. For the baseline survey, the EOU drafted the survey, and then the PEAB members provided verbal feedback on the survey constructs during the meetings. The EOU then prepared the survey with the PEAB’s edits in REDCap (REDCap is a secured, web-based platform for hosting and managing online surveys and databases []), and each PEAB member took the survey and provided written feedback after each question/response option. For other printed materials (e.g., consent document, recruitment flyer) and the phone script, the PEAB provided feedback directly on electronic copies or verbally during the monthly PEAB meetings.
3. Results
3.1. Overview of PEAB Recommendations
The PEAB made key suggestions that enhanced study recruitment, informed consent, and survey development. A summary of the PEAB’s recommendations and the corresponding changes to informed consent, recruitment, and survey development are presented in Table 1, Table 2 and Table 3, respectively. Overall, the PEAB highlighted several potential barriers to study enrollment that the study team addressed including: (1) perception that the study team was asking for money, (2) belief that the researchers would exploit the use of tissues and/or specimens, (3) uncertainty about how study data and protected health information (PHI) would be used and shared, (4) confusion regarding what genetic results would be provided, and (5) concern about whether returned genetic test results would impact medical choices or healthcare.
Table 1.
Participation Engagement Advisory Board (PEAB) Recommendations for Recruitment in the Washington University Participant Engagement and Cancer Genome Sequencing (WU-PE-CGS) Study.
Table 2.
Participation Engagement Advisory Board (PEAB) Recommendations for Informed Consent in the Washington University Participant Engagement and Cancer Genome Sequencing (WU-PE-CGS) Study.
Table 3.
Participation Engagement Advisory Board (PEAB) Recommendations for Survey Development in the Washington University Participant Engagement and Cancer Genome Sequencing (WU-PE-CGS) Study.
3.2. Recruitment
The PEAB optimized the recruitment script by enhancing brevity, tailoring the script to the participant, and clarifying the expectations of participating in the study. For example, based on the PEAB’s recommendation, the study team tailored the recruitment script to the participant’s location by varying the script if the participant was local (St. Louis) or from outside the area. The PEAB also requested that during the recruitment process, study coordinators give more details about specimen collection and make it explicitly clear that participants’ specimens will not be exploited. As a result, the study team made changes to the recruitment script to emphasize that specimens would not be used for any purpose outside of the study and would not be shared with external organizations. The study team also clarified text to highlight that the study involves using existing samples and does not require participants to provide new samples over the five-year study period unless explicitly stated. The PEAB also provided suggestions to enhance the recruitment flyer. The initial recruitment flyer referenced the “Cancer Moonshot Initiative.” The PEAB felt that referring to this during recruitment may not be beneficial because participants may not be familiar with the initiative. Therefore, the flyer was adjusted to de-emphasize the “Cancer Moonshot” by placing in a less prominent position, and references to the “Cancer Moonshot” were supplemented with references to the National Cancer Institute to improve resonance and credibility. Moreover, the flyer title was changed from “Partner With Us” to “Help Us To Learn More” to better align with the intent of the study and make the call-to-action clearer and more engaging to potential participants.
3.3. Informed Consent
The PEAB enhanced the consent process by simplifying information, addressing data protection concerns, delineating the roles of the study team vs. participants’ healthcare providers, and clarifying the return of genetic results process. For example, based on PEAB feedback, the “Key Information” section of the informed consent document was shortened and re-ordered. Specifically, the EOU moved the “What will happen during this study?” sub-section to the beginning of “Key Information.” This helped ensure that participants received the most important information up-front. Additional feedback from the PEAB resulted in changes that more clearly explained that the study team will not pay for additional genetic testing and that study results will not impact on medical decisions or medical care provided by the participants’ healthcare providers.
3.4. Baseline Survey Development
The PEAB improved the baseline survey by suggesting that the EOU clearly defines genetic-related terms. As a result, the study team added specific definitions for genetic testing and genomic testing to the corresponding survey questions. The PEAB also pointed out that questions about “worry” also apply to patients in remission as well as patients with an active cancer diagnosis []. This resulted in the study team including this question for all participants. Finally, the PEAB highlighted many areas where clarity and brevity could be enhanced, resulting in changes such as removing the survey questions about how genetic tests would be returned and questions about collection of tissue samples.
3.5. PEAB Suggestions That Did Not Result in Changes to Recruitment, the Informed Consent Process, or Survey Design
The study team did not implement some PEAB suggestions in situations where the suggested changes were not feasible. For example, the PEAB suggested that the study team revise the text in the informed consent document from “you will not benefit from this study” to “you may or may not benefit from this study.” However, the Institutional Review Board (IRB) did not approve of this change. When providing feedback on the baseline survey, the PEAB reviewed the “Experiences with Racism” scale and recommended that the study team add “the time commitment of the doctor” as an option to capture this as a facet of racism. However, the study team opted not to make this change because the scale was previously validated []. Finally, the PEAB recommended that the recruitment script be tailored to each disease. The study team chose not to make this change due to the complexity of having three individual scripts for a single study.
4. Discussion
Community engagement is a foundational component of the PE-CGS. The overall goal of the PE-CGS is “to learn from—and work with—participants so we can help reduce health inequities in groups with rare and understudied cancers.” []. This goal also aligns with guidance from the American Society of Human Genetics []. Further, the relationship between the WU-PE-CGS and PEAB aligns with the principles of CBPR. CBPR is designed to bridge the gap between researchers and communities, leading to more culturally appropriate study designs and instruments and enrichment of data quantity and quality []. Within the WU-PE-CGS, the PEAB provided several insights and enhancements that would not have been identified by researchers alone. These insights and enhancements will ideally contribute to increased enrollment and participant engagement in the subsequent phases of the study. Whenever possible, the WU-PE-CGS deferred to PEAB recommendations.
To address increasing rates and disparities of the three selected cancers, the WU-PE-CGS aimed to increase research knowledge of the genomic landscape of tumors overrepresented in groups that have been underrepresented in cancer research []. However, many known barriers to participating in cancer genomics research exist: perceived costs, existing beliefs and knowledge, fears of discrimination based on results of genetic tests, privacy and confidentiality concerns, mistrust of the medical system, lack of information provided by providers, and confusion over various genetic tests and results [,]. These barriers can potentially impact Black Americans more than White Americans. As a result of these barriers, Black Americans may be less likely to use genetic testing and this can contribute to underrepresentation in cancer genomics research [,]. PEAB involvement early in the study design, from the time of grant development, was key in addressing these barriers. The specific and actionable concerns identified by the PEAB are well aligned with the known barriers to participation in research and genomic sequencing including mistrust of the medical system and fear of genetic discrimination. Notably, these concerns occurred early in the study process, at the time of recruitment and consent, and could have precluded participants from enrolling. Engaging with the PEAB early in the study design enabled the study team, in collaboration with the PEAB, to improve recruitment and consent processes before the start of the study.
In general, the feedback provided by the PEAB is consistent with broader recommendations for successful community-based research. A recurring theme of the feedback provided by the PEAB was the importance of presenting information in a concise manner, with the most important information first. This is consistent with previous findings that have shown shortened consent forms do not decrease comprehension of study procedures and can potentially increase participant engagement [,,]. Moreover, the PEAB also highlighted the importance of tailored information and taking into account participant familiarity with federal initiatives. These recommendations are consistent with previous findings that highlight the importance of personalizing the informed consent process and developing resources that are appropriate for the community [,,].
Ultimately, the WU-PE-CGS implemented the majority of suggestions recommended by the PEAB except in specific instances where the IRB did not approve, there was potential harm to data validity (changing a validated scale), or the change was both logistically complex and did not impact the key information being presented to participants (the key recruitment information was the same across all cancer types and thus the script was not tailored to cancer type). Throughout the project the study team had ongoing conversations with the IRB and shared PEAB feedback with the IRB. However, despite this in some instances PEAB recommendations could not be implemented due to regulatory requirements. In these instances, we honestly and clearly shared these decisions with the PEAB as soon as possible. We found that this clear and forthcoming communication strategy helped ensure that PEAB did not feel that their suggestions were being ignored. However, our experience highlights the tension between sometimes unflexible regulatory requirements and advisory board feedback. This demonstrates an ongoing need for new strategies that balance IRB requirements with community feedback in way that both maintains study integrity and ethical research processes while allowing for changes that respond to participant needs.
In the next study phase, the WU-PE-CGS will continue to work closely with the PEAB. Key next steps include returning genetic results to enrolled participants, administering the follow-up survey, and connecting participants with positive results to genetic counselors. The strong relationship formed between the study team and PEAB in the early stages of this study will help ensure continued collaboration throughout the implementation of the study. The PEAB members attended the Annual PE-CGS Meeting and indicated they would like to play a greater role in disseminating study findings as the study progresses.
Key strengths of our study include early PEAB involvement and the inclusion of three rare cancers that are increasing in incidence and disparities. Reversing these cancer trends will require that research, particularly genetic research, be representative of patients most likely to bear the burden of disease. Here, we have shown how early engagement of a community advisory board can help identify and address key barriers to participation in cancer genomic studies. However, it is important to note that the engagement approach used here requires ongoing resources making sustainability a challenge and PEAB members may not be representative of all patients with cholangiocarcinoma, early-onset colorectal cancer, and multiple myeloma.
Ultimately, the WU-PE-CGS will help address disparities among patients with cholangiocarcinoma, colorectal cancer, and multiple myeloma by increasing research knowledge of these rare and understudied cancers. Importantly, the lessons learned in the study can be applied to other conditions beyond the three cancers included here. Key lessons learned, including how community member feedback can enhance the clarity of consent and recruitment materials and help identify potential participant barriers early in the study, can be applied to genomic research for other rare cancers or chronic conditions. The development of institutional policies regarding advisory boards could address key issues including long-term sustainability beyond the period of grant funding and effective processes for balancing regulatory compliance while still allowing the agility needed implement advisory board suggestions.
5. Conclusions
The PEAB provided valuable feedback on recruitment, consent, and survey development. Key recommendations from the PEAB highlighted the importance of being concise, clearly laying out the expectations of participants if they choose to enroll, addressing data security concerns, prioritizing key information in the consent process, clarifying how genetic results will be returned, and plainly defining scientific methodology. Implementing the suggestions made by the PEAB will help ensure the success of subsequent phases of the WU-PE-CGS. Our findings highlight the importance of community engagement for genomic research, particularly for rare and understudied cancers.
Author Contributions
Conceptualization, S.K., L.D., R.C.F., G.A.C. and B.F.D.; Investigation, C.M., E.L., J.M., M.B., N.C., L.D. and R.C.F.; Project administration, B.M.-G.,K.W., B.W., C.M., E.L., J.M., M.B., N.C., D.S., L.D., R.C.F., G.A.C. and B.F.D.; Supervision, L.D., G.A.C. and B.F.D.; Validation, B.W.; Writing—original draft, S.K. and B.M.-G.; Writing–review and editing, S.K., B.M.-G., K.W., B.W., C.M., E.L., J.M., M.B., N.C., D.S., L.D., R.C.F., G.A.C. and B.F.D. All authors have read and agreed to the published version of the manuscript.
Funding
This work was supported by the National Institutes of Health (U2CCA252981, PIs Colditz, Fields, Drake, and Ding) SK, BMG, RCF, GAC, and BFD were funded by the Barnes-Jewish Foundation and Siteman Cancer Center. BMG was also supported by the National Cancer Institute (grant number T32CA190194, MPI: Colditz/James).
Institutional Review Board Statement
We did not seek IRB approval for the work presented in this paper as this information was provided by our internal Participation Engagement Advisory Board as a part of study planning and quality improvement.
Informed Consent Statement
Not applicable.
Data Availability Statement
This is a process paper. There is no data to share beyond what is already presented in the manuscript.
Acknowledgments
We sincerely thank the members of the Washington University Participant Engagement Advisory Board (PEAB) for their essential contributions to this research. Their guidance strengthened the study’s recruitment strategies, informed consent processes, and survey development.
Conflicts of Interest
The authors declare no conflicts of interest.
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