ABSTRACT
Background: Inclusion of historically underrepresented populations in research has been a problem existing for many years. The recent Covid pandemic has exposed the significant cost of gaps in access to care. There remains a need to reevaluate current research paradigm frameworks to consider tailored approaches that accommodate any location that would ease participant burden and maintain retention. Current decentralized research models include home and mobile options. However, barriers exist, and certain demographics remain elusive to recruitment into research studies. Aim(s): In this paper, we aim to identify a theoretical framework that will allow for more inclusivity in research. Methodology: Current utilized community-based decentralized research models are compared, barriers in recruitment and retention of interested participants are examined, and a framework individualized to study participants is offered. Result(s): The proposed framework expands upon the complex adaptive systems theory to incorporate community-based research which considers dividing studies into individual study visit components that may differ in location. It allows for ease of research participant access to care and mutual collaboration among providers and institutions. This new theoretical model expansion outlines a novel approach to communitybased participatory research for increased representation and inclusion. Conclusion(s): Investigators should carefully consider creative and effective solutions to overcome barriers to research participation access, increase diversity and representation, and provide tailored public health interventions. Minimally risk study intervention visits may occur in multiple community-driven locations such as: community resource centers, local physician offices, mobile research units, remote electronic visits, home settings, and a combination of the above (hybrid model). Breaking studies into individual study visit components expands the reach of science into the communities that have long been difficult to reach.
ABSTRACT
INTRODUCTION The Prostate Cancer Transatlantic Consortium (CaPTC) has the goal of better understanding the burden of prostate cancer among Black men of West African descent. While prostate cancer disproportionately affects Blacks around the world, little research is done to understand what mental health and social support play a role in prostate cancer risk factors. The purpose of this 10-year longitudinal study is to establish a cohort of U.S.-born Black men, West African-born Black men who reside in the U.S, and West African Black men in Africa who would be prospectively and longitudinally followed to better understand the cause of prostate cancer and how different factors might influence it. METHODS Study staff partnered with community-based organizations, events, and stakeholders to engage with the priority population. Snowball sampling was also used for recruitment. All participants were made aware of the longitudinal nature of the study and that they would be contacted every two years for follow-up. Informed consent was done in community settings electronically and on paper. Once consent was received, participants completed the survey with a unique identifier and filled out a Cohort Contact sheet. They were given the option to complete this on their own or with the help of the study staff. Study Staff would then measure participants' weight, height, and waistline, to be recorded on the survey form. After this, participant saliva was collected and tracked with the unique identifier. All collected data was stored on RedCap and a Chi-squared test was utilized to identify statistical significance. RESULTS 803 participants are included in this data with 77 in Cameroon, 663 in Nigeria, and 59 in the United States. When asked about emotional support, 13.6% (US) 11.8% (Nigeria), and 14.3% (Cameroon) indicated never or rarely having emotional support. 5.8% of those in the United States, 5.6% of those in Nigeria, and 7.8% of those in Cameroon felt dissatisfied or very dissatisfied with their lives. The p-value for both was found to be <0.001, therefore, suggesting statistical significance. On the other hand, participants described having an average of 6.53 (US), 9.4 (Nigeria), and 8.26% (Cameroon) days where their mental health was not good. However, this was statistically insignificant with a p-value of .95. CONCLUSION Mental health issues have been on the rise since the COVID-19 pandemic. While many people of color have stigmatized needing mental health help, it is important to find ways to overcome this barrier in assessing mental health and social support needs. Future research should continue to ask mental health and social support questions in order to assess their role in prostate cancer risk factors.
ABSTRACT
Background: The Research Training Opportunities for Outstanding Leaders (ReTOOL) Program is an NCI/NIH-funded program (R25CA214225) that focuses on increasing the representation of underserved minority (URM) scientists in biomedical research careers to diversify the cancer research workforce. In addition to didactic curriculum and mentoring, each trainee works with a research mentor who provides hands-on research training experiences during the summer. Responding to the COVID-19 pandemic, the ReTOOL Program was modified to be virtual for the 2020 program. Methods: In response to the COVID19 global pandemic, the ReTOOL program leadership and faculty mentors modified the program element: didactic classes, research training, mentorship, seminars and support networks. The introductory week's independent reading sessions and weekly research seminars remained unchanged, as they were already virtual. Results: 20 students participated in the ReTOOL 2020 program, which started on May 4 and ended on August 7. An online program agreement was created to set expectations about participation, weekly reporting form to ensure trainees met program requirements, and evaluations for continuous monitoring. Specific adjustments that were made included: (1) the one-week preparatory didactic classes were conducted online using Zoom;(2) all research training took place virtually. All wet-lab research-training activities were cancelled, with the 2020 faculty mentors primarily dry-lab scientists and scientists with expertise in secondary data analyses. All trainees worked remotely with dedicated computer/laptop with camera for Zoom video communications, internet and dedicated space for learning. There was access to online library resources through University of Florida (UF);(3) Mentorship was provided with increased frequency of meetings with faculty mentors, program staff and peers;(4) Weekly social event to foster relationships and peer networks. Trainees developed fun, lighthearted activities;and (5) Research showcase with oral presentations through Zoom and innovative use of Twitter for poster sessions. A critical missed opportunity for the trainees was visiting different graduate or professional programs at UF. To fill this gap, we provided funding for each trainee to visit UF later. An advantage of moving the program to a virtual platform was co-mentoring by international mentors in Africa, through the Prostate Cancer Transatlantic Consortium (CaPTC). Additionally, the Service Learning experiences took place virtually. Conclusion: The COVID19 pandemic created an unusual circumstance but we were able to overcome the challenges, which included Zoom fatigue, adjustment to different time zones, isolation and information fatigue. While the ReTOOL research-training program was different in 2020, we were still be able to provide a meaningful experience for the trainees. 2020 trainees submitted 7 conference s and 6 publications. This includes a special series focused on the ReTOOL program projects soon to publish in ecancermedicalscience Journal.