Lending Patient Experiences to Medical Education: More Than the Journey (Level 1)

Session Description: There are few things as moving as when a patient comments that they are driven to contribute to medical education, even if it requires sharing deeply personal information, because they want future generations of patients to have an easier time than they have had. Involvement of patients in educational planning and delivery can increase the relevance, meaning, and impact of CME and is part of the commendation criteria by the ACCME. Importantly, more than sharing their journeys, patients excel as speakers, mentors, and panel discussants. Patients have successfully and meaningfully contributed to knowledge- and competence-based education, including topics related to the disease state, unmet patient needs, barriers to care, and strategies to address those barriers. Advocates who are trained or experienced in speaking to professional audiences are particularly effective in delivering medical education.

From an advocate’s own words, ‘Patients are the experts in the lived experience…We can provide the perspective of being drop kicked into their foreign country of cancer land. We don’t know where we are. We don’t speak the language…patients are confronted with making these difficult treatment decisions, knowing there’s no room for error… on top of all of that anxiety and distress, cloud our ability to comprehend things clearly. So, I think that often gets lost in the science and the research…’.

Following a small-group Summit where clinical and scientific learners had close interaction with patient advocates, about half of learners indicated never having interacted with a patient advocate in the past, in the disease state of their focus. Following the Summit, 33% continued their involvement with a patient advocacy group.

In a Think Tank initiative that gathered patient advocates with clinicians and scientists, patient advocates contributed to the identification of gaps in practice, such as the role of economic and geographic disparities in creating barriers to access of specialty care and subsequent delays to- or inappropriate selection of- testing and treatment. As a Call to Action resulting from the Think Tank, patient advocates committed to educating clinicians on best practices to early diagnosis in their disease state of focus, specifically early, quick, and efficient identification of oncogenic drivers. Elevating the way in which our field incorporates patients into medical education can have long-lasting benefits.