ASPO Abstracts
Improving Cancer Research through Empathic Instructional Design: The Citizen Scientist Cancer Curriculum
Category: Survivorship & Health Outcomes/Comparative Effectiveness Research
Conference Year: 2023
Abstract Body:
Citizen Scientists (CSs) at the University of Florida (UF) health science center provide a critical piece of research that is often unavailable to researchers: community perspective. This was made possible partly through an online curriculum about clinical research basics created for, and with, CSs. Recently, the UF Health Cancer Center (UFHCC) has implemented a similar approach to its research and created a course focused solely on cancer research, the CS Cancer Curriculum. This course is a companion piece to the clinical research course and relies on the same instructional design principles. However, as cancer can be a sensitive subject, the research team felt a more empathic approach was necessary. This was reinforced by feedback from a needs assessment where every CS reported personal experience with cancer. Purpose: The purpose of this study was to determine whether an empathic approach to instructional design helped CSs feel prepared to engage in cancer research. Methods: The research team applied the Self-Determination Theory to the course and its assessments. Storytelling was used to make a patient case study more relatable to the CSs. The patient's story was presented over several video interviews with the patient, family, and physician. Each video was accompanied by a link to the National Cancer Institute support services page. Reflective questions were also added to the didactic quizzes throughout the course. Results: For the nine CSs completing the course as part of a pilot test, the average total score for all quiz questions in the course was 95.6%. Two CSs had perfect scores and an additional three CSs missed only one question. Most (86%) of the post-test respondents felt they were capable of applying what they had learned. Conclusions: Relying on empathic approaches to this topic respected the lived experiences of CSs which allowed them to relate to, and be empowered by, the content and feel capable of applying it to their work. The CSs in this cohort are already positively impacting studies at UFHCC. They are a great example of the impact that community stakeholders can have on cancer research if we, as researchers, are willing to adjust our approach to the partnership.
Keywords: stakeholder; empathic instructional design