Abstract P3-15-02: Assessing the engagement related needs of researchers and patient advocates at the UNC Lineberger Comprehensive Cancer Center
Authors: Thomas Blount, Katherine Gora Combs, Caroline Mann Norwood, Emily Rose Skywark, Jennifer A. Potter, Angela Zhang, Patricia A. Spears
Journal: Cancer Research (2022)

Abstract Introduction: Engaging patient advocates in research is a practice that identifies and prioritizes patient perspectives and needs throughout the academic or clinical research process. “Patient advocates” may refer to those receiving care, survivors, caregivers, or other individuals with a stake in a patient’s respective health outcomes. Research shows that engaging advocates in research can have a multifaceted positive impact, including better quality research, expanded applicability of research, and greater understanding of findings within the patient community. However, most researchers report limited engagement of advocates in their research citing significant challenges in its implementation. Purpose:The purpose of this project was to identify the needs of researchers and advocates involved in research at the UNC Lineberger Comprehensive Cancer Center (Lineberger), in order to expand the capability and quality of their engagement. Lineberger recognized the importance of understanding the current engagement structure and identifying ways to increase meaningful opportunities for advocates to participate throughout the research process.Methods:To assess the needs of Lineberger researchers and advocates, we took a mixed-method approach to data collection and analysis. The needs of researchers were assessed quantitatively using a Qualtrics survey aimed at measuring researchers’ involvement and satisfaction with involving advocates in research, current communication methods, and training needs. Four interviews were also conducted with key informant researchers. To assess advocate needs, we conducted a focus group with five Lineberger advocates to explore their connection process with researchers, their training experience, and perceived utilization in cancer research. Quantitative data collected from the survey was analyzed using both Qualtrics’s internal report output and Excel. The interview and focus group recordings were reviewed and critical ideas were transcribed to identify themes.Results: Several common themes emerged when assessing the needs of researchers and advocates. Both groups felt the connection process between researchers and advocates could be improved. The lack of a formal process was a hindrance, with 25% of researchers reporting at least one experience where they were unable to find an advocate to include in their research. Participants also felt training would be helpful. Moreover, advocates and researchers felt that more frequent and streamlined communication would improve project work. Lastly, both groups expressed a desire to expand the advocate pool to include more diverse voices that adequately represent the community.Recommendations:We proposed several recommendations to address the identified needs. To increase connection between advocates and researchers, we recommend a centralized list of trained and vetted advocates available to all Lineberger researchers, and a process, run by a dedicated coordinator, to match available patients with study needs. To improve and increase communication between the two groups, Lineberger should develop a bidirectional, web-based communication platform. For increased efficacy of advocate contributions to research, Lineberger should provide formal, systematic training for researchers and advocates , each group receiving training on distinct, tailored topics. We recommend that the patient pool be intentionally diversified to include categories of gender, race, age, education level, economic status, and cancer-specific knowledge, which would better represent the Lineberger patient. profile. Lineberger should also provide adequate compensation for advocates involved in Lineberger research to ensure the engagement is equitable and ethical. Citation Format: Thomas Blount, Katherine Gora Combs, Caroline Mann Norwood, Emily Rose Skywark, Jennifer A. Potter, Angela Zhang, Patricia A. Spears. Assessing the engagement related needs of researchers and patient advocates at the UNC Lineberger Comprehensive Cancer Center [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P3-15-02.