Patient Advocate Presence Helps Poster Presenters Understand Clinical Significance of their Research and Increases Empathy

Abstract

Patient advocates represent the voice of the patient community and bring a unique perspective to research. We hypothesized that including patient advocates in poster sessions allow trainees to communicate their science in lay language, have an increased understanding of the clinical impact of their work, and increase their empathy for patients. A survey was designed to assess the impact invited patient advocates had on poster presenters at our Department of Radiation Oncology Research Symposium. The two advocates, one with primary breast and primary endometrial cancer, and one with metastatic breast cancer, visited each poster to discuss the project goals and outcomes with all 16 researchers (graduate/medical students, postdoctoral fellows including medical and physics residents, laboratory assistants, and faculty). The survey included demographics, and Likert scored questions about their ease in discussing research and use of lay language, the impact of the advocate on increasing the presenter's empathy and understanding the clinical significance of their work, and future role of advocates in complementing their research. Following the poster session, 14 of 16 participants completed the survey. Respondents were 57.1% male, 57.1% younger than 30 years old, and 50% people of color. Poster presenters comprised: 35.7% Graduate/Medical Students, 42.9% Medical/Physics Residents or Postdoctoral Fellows, 14% Faculty, and 7% laboratory assistants. All respondents agreed/strongly agreed they were comfortable talking to advocates. Overall, 42.8% of participants strongly agreed that they could talk to the patient advocate in lay language. 85.7% agreed/strongly agreed that their empathy for patients increased by this interaction. Although 92.9% of poster presenters believed patient advocates were able to help them understand the clinical impact of their research and 71.4% believed advocates helped them think of ideas to complement their research, 57.1% did not believe advocates could help them identify novel research conclusions. Most respondents would like advocates at future poster presentations (92.9%), but were not as sure and they would like advocates participating in study design or data analysis. Women, people of color, and graduate/medical students were most comfortable communicating in lay language, believed advocates increased their empathy and understanding of the clinical significance of their work. Patient advocates in poster sessions help trainees communicate their science, increase their empathy and understanding of the clinical impact of their research. Workshops should be considered to help young scientists communicate their science in lay language. Future radiation oncology training should consider including the patient advocate voice to improve the tangible connection between research and real-world impact.