What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study
This research project found that people graduating from intensive patient education courses such as DAFNE emerge with disease-specific biomedical, experiential and practical knowledge that exceeds that of many healthcare professionals and that tensions can arise when generalist and even specialist doctors and nurses are not comfortable with patients who have a high level of expertise.
Based on 32 interviews with patients and 146 hours of observations of the DAFNE course, the study found that although some healthcare teams were happy to support course graduates and even learn from them, this attitude could not be counted on, particularly when patients made budgetary demands that the budget-holders did not fully understand, such as requests for home blood testing equipment. It found that expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field, and in some circumstances, such as inpatient care, self-management may be greatly discouraged or even forbidden by hospital policy.
The article concludes that as more chronic illness care is put into the hands of generalists, such situations are likely to arise more and more often; and that the importance of teaching strategies to cope with patient expertise, rather than see it as a threat, is of increasing relevance.