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Healthcare professionals are now recognizing the importance of taking patients’ experiences into account. A recent study of more than 1,000 patients and clinicians revealed that patient reports are often undervalued.
According to researchers from the University of Cambridge and Kings’ College London, clinicians ranked patient self-assessments as the least important factor in making diagnostic decisions. It was also determined that patients both downplayed and exaggerated their symptoms more frequently than they admitted to doing.
One patient shared that being disbelieved by clinicians made them feel “degraded and dehumanized.” They went on to say, “If I hadn’t stood up for myself and continued to place my trust in the clinicians’ expertise over my own, I wouldn’t be here today. Being disregarded and told I’m wrong about the symptoms I’m feeling makes me feel unsafe.”
A recent study published in Rheumatology used neuropsychiatric lupus, an incurable autoimmune disease, as an example to analyze the varying weight clinicians assigned to 13 different types of evidence used in diagnoses. This included evidence from brain scans, patient experiences, and input from family and friends.
Only 4% of clinicians ranked patients’ self-assessments within the top three types of evidence. It’s interesting to note that clinicians ranked their own assessments highest, despite admitting that they often lacked confidence when diagnosing conditions with invisible symptoms, such as headaches, hallucinations, and depression. Such ‘neuropsychiatric’ symptoms are often misdiagnosed, resulting in lower quality of life and early death, and are more commonly dismissed compared to visible symptoms like rashes.
Sue Farrington, Co-Chair of the Rare Autoimmune Rheumatic Disease Alliance, emphasized the need to move away from the “doctor knows best” attitude to create a more balanced relationship between patients and healthcare providers.
Of the 676 patients surveyed, nearly half reported that they were seldom or never asked for their self-assessments of their disease, although there were also positive experiences shared. Some clinicians, particularly those in psychiatry and nursing, highly regarded patient opinions. “Patients often come to appointments well-informed about their condition and have put in great effort to understand their own bodies… they can often provide valuable insights,” shared a psychiatrist from Wales.
The lead author of the study, Dr. Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge, commented, “We must listen to and value patients’ insights and their own interpretations of their symptoms, especially in the case of long-standing diseases. After all, they are the ones living with the condition on a daily basis.”