Understanding the perceived impact and value of research advocacy initiatives for colorectal cancer

Abstract

Background Research advocacy utilizes patient insight to progress research, ensuring that patient values remain a priority. It is integral to inform activities such as designing clinical trials, providing perspectives on Institutional Review Boards (IRB’s), and reviewing research grants. As a leader in colorectal cancer (CRC) advocacy, Fight Colorectal Cancer (Fight CRC) developed a formal research advocacy training program in 2015 with the goal of preparing CRC advocates to become the most educated patient voice at the research table. Methods To understand the effectiveness of a research advocacy training program and subsequently research advocacy as a whole, Fight CRC distributed online questionnaires between December 2018 and July 2019 to oncology professionals who had previously worked with Fight CRC research advocates, including physicians, program directors, and consumer review administrators. A questionnaire was also disseminated to Fight CRC research advocates. Results In total, twenty-six stakeholders participated and 89% agreed/strongly agreed that there was value in having the patient voice in research. Respondents reported that advocates provide a perspective that would not otherwise be considered in the research process. Fourteen research advocates participated in the survey and the majority indicated that the research advocacy program equipped them to sit on panels and provide effective insight. All research advocates believed that their patient insight is taken seriously by the research community. Conclusion In order for research advocacy to have a significant impact and a high perceived value on research, it is important to establish an effective training program to support adult learning. In addition, it is necessary for researchers to understand how advocates can positively influence their work, and how the scientific community can engage with and leverage research advocacy to its fullest potential to improve scientific research, delivery of care, and quality of life for patients with cancer.