Patients as experts in the illness experience: Implications for the ethics of patient involvement in health professions education

In response to calls to increase patient involvement in health professions education (HPE), educators are inviting patients to play a range of roles in the teaching of clinical trainees. However, there are concerns that patients involved in educational programs are seen as representing a demographic larger than themselves: their disease, their social group or even patients as a whole. This leads to difficult ethical challenges related to representation, including problems of tokenistic inclusion and of inadvertently essentializing marginalized groups. We propose that conceptualizing patients as experts in their illness experience can help resolve these dilemmas of representation equitably and effectively. Just as clinical experts are involved in HPE to share their expertise and represent their clinical experience, so too should patients be invited to participate in HPE explicitly for their expertise in their illness experience. This framing clarifies the goals of patient involvement as technocratic rather than tokenistic, mandates meaningful contributions by patients, and helps frame patient involvement for learners as the presentation of expert perspectives.