Patients’ ‘lived experiences’ should be more greatly valued, says study

A new study has today revealed that patients’ ‘lived experiences’ should be more greatly valued on the journey to diagnosis.

The research, led by a team at the University of Cambridge, Kings’ College London and co-authored by the Wren Project founder Kate Middleton, has shown that clinicians ‘under-valued’ patient self-assessments in diagnostic decision-making.

In a study published today in Rheumatology, researchers used neuropsychiatric lupus - an incurable autoimmune disease that is challenging to diagnose - as an example to examine the different value given by clinicians to 13 different types of evidence used in diagnoses. This included evidence such as brain scans, patient views, and the observations of family and friends.

When considering a patient’s own self-assessment, the study found that fewer than 4% of clinicians ranked this in the top three types of evidence. Clinicians ranked their own assessments as the highest.

One patient recalled the common feeling of being disbelieved as “degrading and dehumanising.” 

“If I had continued to have regard for clinicians’ expertise over mine, I would be dead,” the patient reported.

"When I enter a medical appointment and my body is being treated as if I don’t have any authority over it and what I’m feeling isn’t valid, then that is a very unsafe environment. I’ll tell them my symptoms and they’ll tell me that symptom is wrong, or I can’t feel pain there, or in that way.”

Speaking about the study, the Wren Project founder Kate Middleton said: “I hope this research helps to bring about improvements in the relationships between patients and their doctors based more on mutual respect and active listening.

“The patient voice is the most effective and accurate tool for diagnosing and assessing symptoms. I hope people’s voices are valued as much as we value them at the Wren Project. “

Lead author of the study, Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge, said: “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. 

"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.”

You can read the full report here.