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Do you have any data for how much time is spend running tests and exams on people without autoimmune conditions? That might impact autoimmune diagnostic timelin

Do you have any data for how much time is spend running tests and exams on people without autoimmune conditions? That might impact autoimmune diagnostic timelines. Anecdotally, I have heard that hypochondria is a problem in this space. So I would want to know the ratio of incorrect self-diagnosis to confirmed diagnosis, and what percentage of the system's totally human and technical resources are spent recognizing false positives. I think that this sort of effort is probably a positive one. Patients should have access to their records are are more likely to be able to centralize data for analysis by a 3rd party - with all the attendant risks - more effectively than any other party. Secure systems without conflicts of interest - ie, insurance companies - to aid multidisciplinary diagnoses over longer time frames is a good thing. But the risk of AI hallucinations and doctor/diagnosis shopping are real. This post was light on details on the diagnosis, how many rheumatologists they saw to get it, what tests confirmed it, and if the treatment has been effective in a way that cannot be skewed (https://pubmed.ncbi.nlm.nih.gov/30139289/ https://pubmed.ncbi.nlm.nih.gov/30139289/)

nradov 2y ago
That depends on how you define confirmed diagnosis and false positives. For a lot of autoimmune conditions there's no real solid diagnostic criteria. Like the patient has a variety of symptoms which could indicate a few different conditions. The doctor suspects it might be lupus so treats for that and the patient's symptoms seem to improve. Does that mean the patient should now have a confirmed lupus diagnosis? Hard to say.
itchyouch 2y ago
I don't think hypochondria is the problem as much as there is a degradation in the overall health of the population and they do feel unwell, but the system is unable to diagnose them because they aren't "bad" by any quantitative standards medicine operates on (ie bloodwork/weight/etc being off). It's like how the tech world did not notice or address "the website is slow" in the 90s until folks started writing about how the 95th, 98th, 99th, 99.9th percentile times affected user experience. Once we could link 95th percentile page latency to revenue/profit, all of a sudden, investing in performance became a priority. I'm not sure that we have managed to link and make a case of linking GDP (or some other metric) to overall health of the population at the fringes.

nradov 2y ago

That depends on how you define confirmed diagnosis and false positives. For a lot of autoimmune conditions there's no real solid diagnostic criteria. Like the patient has a variety of symptoms which could indicate a few different conditions. The doctor suspects it might be lupus so treats for that and the patient's symptoms seem to improve. Does that mean the patient should now have a confirmed lupus diagnosis? Hard to say.

itchyouch 2y ago

I don't think hypochondria is the problem as much as there is a degradation in the overall health of the population and they do feel unwell, but the system is unable to diagnose them because they aren't "bad" by any quantitative standards medicine operates on (ie bloodwork/weight/etc being off). It's like how the tech world did not notice or address "the website is slow" in the 90s until folks started writing about how the 95th, 98th, 99th, 99.9th percentile times affected user experience. Once we could link 95th percentile page latency to revenue/profit, all of a sudden, investing in performance became a priority. I'm not sure that we have managed to link and make a case of linking GDP (or some other metric) to overall health of the population at the fringes.