Would Relying on Patient Generated Data Make a Difference?

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Discrepancy between patient generated data and clinician reported data

Recently on the blog, I mentioned an oft-quoted study which suggests that the disease course for Rheumatoid Arthritis is becoming milder. Something puzzled me at the end of the report. The researchers noticed that Rheumatoid Arthritis patients’ ratings of their disease activity were opposite to that of clinicians. Can you guess which way the discrepancy leaned? Do you think the patients or the clinicians rated disease activity as worse? I wondered out loud why the discrepancy exists and whether anyone is studying that.

Yesterday, I told a personal story about how a lady doctor saved my son’s life after several pediatricians almost cost him it by refusing to listen to my reporting of his symptoms. Every day, I read emails and comments from Rheumatoid Arthritis patients who have had problems getting doctors to hear or believe or understand what they are communicating about their symptoms, often delaying diagnosis and treatment. These personal stories may be anecdotal evidence, but are vivid illustrations.

Of course there are not clear statistics about how many doctors are accurate listeners any more than there are numbers on how many patients are accurate symptom reporters. What is clear is that an information gap does exist. And that it’s not a healthy thing.

Doctor supports patient generated data via “patient-reported outcomes”

Last month, in the New England Journal of Medicine, oncologist Dr. Ethan Basch published his findings in a report called The Missing Voice of Patients in Drug-Safety Reporting. Dr. Basch examined the ways that data collected directly from patients differs from data generated by clinicians’ interpretation of patients’ symptoms. He points out that, “In fact, patient self-reporting as a data-collection method was recently embraced by the FDA…” However, Dr. Basch explains that “patient-reported outcomes” are not being used to collect data about adverse events (side effects) in trials for new medicines even when patient testimony is used to support claims (benefits) of drugs.

I hope you will look at his report and his power point slides. They clearly demonstrate from cancer research “that patients report symptoms earlier and more frequently than do clinicians” and that “patients’ reports are more highly concordant with overall health status than clinicians’ reports.”

More on Dr. Basch and patient generated data in The New York Times

This week, The New York Times published an article about Dr. Basch and his work: In Reporting Symptoms, Don’t Patients Know Best? Times columnist Denise Grady interviewed Dr. Basch about what led him to study patient reporting and why he thinks the discrepancy between patient testimony and clinician report exists. Here is an excerpt:

Intrigued, Dr. Basch began to study people receiving chemotherapy, and to compare symptom reports by patients with those from doctors and nurses. The differences were striking. For every problem — fatigue, nausea, appetite loss, vomiting, diarrhea, constipation — patients reported it earlier and more often than did doctors and nurses.

Why does this happen so often? There’s no simple answer.

“There is a sensibility among some old-school clinicians that they have a better sense of their patients’ experience than patients do themselves,” Dr. Basch said. “But doctors and nurses bring their own biases to the evaluation. They might say, ‘Mrs. Smith always exaggerates her fatigue — she says 9, but I rate it a 6.’ ”

Three clinicians asked to rate the same patient’s nausea will often give three different scores, he said.

The tendency to downgrade symptoms may be based on the doctor’s knowledge that a patient is in the early stages of an illness and could be much worse. Or the doctor may be making mental comparisons with other patients who are sicker: “You think your nausea is bad, you should have seen the patient I saw this morning, let me tell you,” as Dr. Basch put it.

Postblog: Changes to the way research or clinical trials are conducted so that patient testimony is included would be good news for everyone since everyone will one day be a patient. However, in order to be properly treated, patients will need individual doctors to be accurate listeners. For now, I recommend patients read their doctors’ notes to assure that they are an accurate reflection of what has been reported.

I would like to thank Z for sending me the New York Times link. Please check out her blog on the NYT article.

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Kelly Young. All rights reserved.

This entry was posted on Friday, April 16th, 2010 at 9:22 am and is filed under RA Research, Resources, and Rheumatology. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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