What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study

Abstract

ObjectiveTo explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with doctors and other healthcare professionals.DesignQualitative user-led study using longitudinal interviews and 146 h of participant observation. Data were analysed using a narrative approach.Participants21 patients with type 1 diabetes, those either about to attend a patient education course or those who had completed the course in the previous 10 years.SettingEstablished patient education centres in three UK teaching hospitals teaching the Dose Adjustment for Normal Eating (DAFNE) course.ResultsBoth postcourse and several years later, most participants spoke of the experience of taking part in education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes. However, interactions within the health system following patient education could be fraught. Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients' ability to continue effective self-management.ConclusionsPatients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise.

The Influence of Doctor-Patient Communication on Health Outcomes: A Systematic Review

“…Yet, patients' in-depth knowledge was sometimes seen as inappropriate, especially by non-specialized doctors who did not feel comfortable with patients showing a high level of expertise. These patients were therefore sometimes mistakenly considered as non-compliant by non-specialist doctors (Snow et al 2013). Also, providing more information was not always regarded as being a better approach.…”

“…Regardless of the unequivocal positive aspects of good patient education, Snow et al (2013) pointed out a very important problem in modern medicine: not all physicians are happy about well-informed patients. Their in-depth knowledge is sometimes even understood as inappropriate and doctors and nurses may get uncomfortable with a high level of patients' expertise.…”

“…The physician's empathy, good interpersonal exchange, and greater fairness in the treatment process have led to higher levels of patient activation (Alexander et al 2012;Hojat et al 2011), while improved patient activation itself has been associated with higher medication adherence (Parchman et al 2010). Several studies have shown that appropriate patient education can help patients gain control over complex diseases (Casas et al 2006;Clark et al 2000;Smith et al 2008;Snow et al 2013;Sperl-Hillen et al 2011), to feel more independent from medical advice (Snow et al 2013), and leads to improved quality of life (Koff et al 2009). …”

Narrative inquiry in diabetes research: Illuminating the psychosocial aspects of diabetes

“…Two studies described holistic approaches that could offer deeper understanding and provide models for future research. Snow and colleagues [34] coded whole stories by theme and created a summary document for each story to enable comparison across participants. Similarly, Stuckey and Tisdell [21] summarized interview transcripts in story form.…”

“…In addition to concerns related to uncertainty, adjustment, and weariness, a longitudinal narrative interview study found that tension with healthcare professionals complicated diabetes self-care [34]. Participants were adults with type 1 diabetes completing a patient education course in the United Kingdom.…”