CAMBRIDGE, United Kingdom — It can be a difficult chore to advocate for yourself in the doctor’s office — especially when what you have to say doesn’t carry the weight that it probably should. According to a new study, many doctors place minimal importance on patients’ perspectives during diagnosis, a practice that may need reassessment.
The research, conducted by a team from the University of Cambridge and King’s College London, examines how clinicians value different types of evidence when making diagnoses. Surprisingly, only four percent of the doctors surveyed considered patients’ self-assessments as one of the top three valuable sources of evidence, out of 13 types.
Additionally, the study uncovered a gender bias in diagnosis. Female patients were more frequently told that mental factors, such as stress, were causing or worsening their symptoms. Moreover, male clinicians were more likely to suggest that patients were exaggerating their symptoms.
A patient interviewed for the study expressed that feeling disbelieved and disregarded by their doctor created a “very unsafe environment.” This sentiment underscores the need for medical professionals to evolve beyond the outdated “paternalistic” mindset of “doctor knows best” and to start valuing patients’ views.
The study involved over a thousand doctors and patients and focused on neuropsychiatric lupus as an example. It’s a challenging disease to diagnose, and the research assessed how clinicians weigh 13 different types of evidence, including brain scans, observations from family and friends, and patients’ self-assessments. Nearly half of the patients reported that their doctors seldom asked for their disease assessments, although some patients had positive experiences with doctors valuing their opinions.
Most doctors rated their assessments as the highest, despite admitting uncertainty in diagnosing symptoms like headaches, hallucinations, and depression. These “neuropsychiatric” symptoms, often misdiagnosed, can lead to lower quality of life and earlier death.
The study highlights one patient’s experience of feeling “degraded and dehumanized” by their doctor’s disbelief. The patient emphasized the danger of disregarding patients’ expertise on their own bodies.
Prior research shows that a doctor listens to a patient’s concerns for just 11 seconds before cutting them off. The same study also found that only a third of doctors give their patients adequate time to speak during a visit.
While some medical professionals, especially nurses and psychiatrists, highly value patient opinions, the study suggests a broader need for a shift in approach.
“It’s time to move on from the paternalistic, and often dangerous, ‘doctor knows best’ to a more equal relationship where the patients with lived experiences and the doctors with learnt experiences work more collaboratively,” says Sue Farrington, Co-Chair of the Rare Autoimmune Rheumatic Disease Alliance, in a media release.
The study also notes that personal characteristics, like ethnicity and gender, sometimes influence diagnoses. Female patients, for instance, were often told their symptoms were psychosomatic.
“It’s incredibly important that we listen to and value patients’ insights and their own interpretations of their symptoms, particularly those with long-standing diseases – after all, they are the people that know what it is like to live with their condition,” adds the study’s lead author, Dr. Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge. “But we also need to make sure that clinicians have the time to fully explore each patient’s symptoms, something that is challenging within the constraints of current health systems.”
The authors acknowledge that patients might sometimes misinterpret their symptoms, but they argue for the benefits of incorporating patients’ insights into diagnostic decisions. This is particularly crucial for conditions like neuropsychiatric lupus, where diagnostic tests often provide limited information.
“No human being is always going to be able to accurately pinpoint the cause of symptoms, and patients and clinicians can both get this wrong,” concludes Dr. Tom Pollak, a senior author of the study. “But combining and valuing both views, especially when the diagnostic tests aren’t advanced enough to always detect these diseases, may reduce misdiagnoses and improve clinician and patient relationships, which in turn leads to more trust and more openness in symptom reporting.”
The findings are published in the journal Rheumatology.
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South West News Service writer James Gamble contributed to this report.
