Credit: CC0 Public Domain
Today, experts are calling for a greater emphasis to be placed on patients’ “lived experiences” following a study of over 1,000 patients and clinicians that revealed numerous instances of patient reports being undervalued.
A research study conducted by a team at the University of Cambridge and Kings’ College London found that clinicians often ranked patient self-assessments as least important in diagnostic decisions. Patients were found to both over- and under-play their symptoms more often than what they reported doing so. One patient expressed the common feeling of being disbelieved as “degrading and dehumanizing” and added, “If I had continued to have regard for clinicians’ expertise over mine, I would be dead… That symptom is wrong, or I can’t feel pain there, or in that way.”
Referencing a study published in Rheumatology, researchers used neuropsychiatric lupus, an incurable autoimmune disease, to examine the different value given by clinicians to thirteen different types of evidence used in diagnoses. Surprisingly, fewer than 4% of clinicians ranked patient’s self-assessments in the top three types of evidence, while often placing higher value on their own assessments, even for diagnoses involving invisible symptoms.
“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 learned experiences work more collaboratively,” commented Sue Farrington, Co-Chair of the Rare Autoimmune Rheumatic Disease Alliance.
Dr. Melanie Sloan from the University of Cambridge’s Department of Public Health and Primary Care, urged, “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.”
