Frequent Contributor (1K+ posts)
Member # 1436
Thanks to everybody who contributed! Here are the preliminary results. I am currently polling a control group of generally healthy people who also have Internet skills. This poll could also be extended to other severely ill patients.
I received surveys from 41 patients who have severe Lyme disease, to find out if they have ever shown Internet information about Lyme to their healthcare providers, and what happened as a result.
Of the 41 surveyed, 29 (71%) went first to their primary care practitioner (PCP) for help with their symptoms, not to the Internet. Only 6 of the 41 went to the Internet first. Sort of puts to rest those who say we're a bunch of hypochondriacs looking for an illness on the Internet.
After their PCP was stumped, patients' secondary sources of information included the Internet (90%) and/or a specialist (85%). Friends, family or support groups were the next most popular sources of information.
Almost all of the patients (39/41, or 95%) brought the Internet information they found to at least one healthcare professional. (One who didn't had a nurse for a wife who did, and the other went right from a PCP to a specialist.)
Healthcare professionals responded negatively in conversations with their patients about Internet information on Lyme fully 78% of the time.
To put it another way, over three out of four conversations ended in negative feedback, and of those, three out of four negative reactions contributed to patients leaving their healthcare professional.
A few patients reported that it was the doctor that told them to leave the practice; other patients reported that they were proactive in searching for a more sympathetic clinician.
It was not the point of this survey to analyze whether or not the Internet information was authoritative or accurate. But what is clear is that there is a breakdown in communication when these very sick patients bring Internet information to their healthcare professionals.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Frequent Contributor (5K+ posts)
Member # 10375
Thanks for putting the numbers to it.
I hate to say it.....but I kind of expected this result.