The Neglect of Chronic Disease Self-Management in Medical Education: Involving Patients as Educators

Abstract

An estimated 133 million Americans and 16 million Canadians (roughly half the population of both countries) live with at least one chronic illness; about one in four suffers limitations to daily activities as a consequence. As the population ages and people live longer, we can expect to see an increase in the prevalence and complexity of chronic illness. Chronic disease management will become a major part of the work of health professionals, both as individuals and as members of interprofessional teams. The need to align medical education with changes in health care delivery will require more emphasis on chronic disease management as well as on the related topics of behavioral and social sciences and interprofessional teamwork. 1 Yet medical education is still focused on, and in, acute care. A PubMed search of all issues of two top medical education journals for the term “chronic disease management” yielded four papers in Academic Medicine and nine in Medical Education. In chronic disease, the patient/family is the chief provider of care. Patient chronic disease self-management (CDSM) and selfmanagement support by clinicians have been identified as essential components of chronic care programs. The need for health professionals to be trained in the core competencies required in CDSM support has been identified. Yet there appears to be a wide gap between health professionals’ understanding of CDSM and the wider concerns and realities of patients. Whereas health professionals identify selfmanagement primarily as structured patient education, patients identify selfmanagement as a process initiated to bring about order in their lives that involves recognizing and monitoring the boundaries, mobilizing resources, managing the shift in self-identity, and balancing, pacing, planning, and prioritizing. A seminal study identified three lines of work that people managing chronic illnesses at home must undertake: illness work, referred to as trajectory management (symptom management, diagnostic-related work, crisis prevention and management); everyday life work (house work, looking after family, paid work, eating, etc.); and biographical work (reconstruction of the patient’s biography). 2These tasks may compete or conflict with medical