crowdsourced healthcare

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elfsprin
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crowdsourced healthcare

Post by elfsprin » Sun Nov 21, 2021 1:15 am

There's a facebook ad I keep getting around a new crowdsourcing platform where folks can sign-up and share 'what worked for them' individually given medical conditions they've been diagnosed with. I can't find it now but maybe I'll add it when I find it. There're a lot of interesting articles around the topic in general, though: https://www.google.com/search?q=crowdso ... e&ie=UTF-8

I find this really interesting and thought folks here would have *things* to say about it.

On the one hand, I'm inclined to be extremely biased towards treatments that have been proven in double-blind, controlled, etc studies. I tend to be very skeptical about homeopathy, folk cures, etc.

On the other hand, I have seen first hand that for many conditions, world-class experts in their field will completely contradict each other in their recommendations. There's simply a lot that we don't know, as we are truly in our infancy when it comes to understanding the human body in what we would call a scientific way. So, I do see there being value in what is perhaps non-scientific, but which is data-based on a massive scale: what folks self-report to be working.

I wonder in what ways this, too, could be considered 'scientific'... not because it's been confirmed via proper studies, but because it is confirmed via big data analytics, which after all is another kind of science.

Share your thoughts.
Last edited by elfsprin on Sun Nov 21, 2021 1:22 am, edited 2 times in total.
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elfsprin
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Re: crowdsourced healthcare

Post by elfsprin » Sun Nov 21, 2021 1:20 am

Attention is the rarest and purest form of generosity - Simone Weil

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HighlyIrregular
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Re: crowdsourced healthcare

Post by HighlyIrregular » Sun Nov 21, 2021 2:15 am

Patient testimonials are way down on my list of things to consult when I do medical research. Sometimes some guy on a forum will describe a conventional treatment he got and I'll pay attention. Before I heard in the media about shingles possibly being triggered by the Covid vaccine, I heard two or three stories of someone who knew someone who got it after receiving the vaccine and I paid attention to that. I ended up getting the Shingles vaccine first. I was pretty well protected from Covid between my N95 mask, isolation, and diet, and believed even if I got Covid my viral load would be low, and I was past the age when you're supposed to get the Shingles vaccine.

The influence that the internet has is scary. At certain times historically people needed more freedom and power, but in the US at this time, with the internet and things like crowdsourced healthcare which a special interest group could disproportionally participate in, smarter, more qualified people who work their way up to a position where they could influence people have less of a voice and that may not be good.

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elfsprin
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Re: crowdsourced healthcare

Post by elfsprin » Sun Nov 21, 2021 2:17 am

A thought: in a controlled study, it’s easy to identify a placebo effect.

Since this is self-reported, you cannot quantify the placebo effect explicitly.

Part of the question about whether this is a valid approach would have to be: over a large enough n, can we conclude that placebo effect has been corrected via its position as an outlier amongst the datapoints.

I don’t think there have been any studies about that, because there’s never been a need to study it, because in controlled studies you can always point to exactly where the placebo effect exists.
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elfsprin
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Re: crowdsourced healthcare

Post by elfsprin » Sun Nov 21, 2021 2:25 am

HighlyIrregular wrote:
Sun Nov 21, 2021 2:15 am

The influence that the internet has is scary. At certain times historically people needed more freedom and power, but in the US at this time, with the internet and things like crowdsourced healthcare which a special interest group could disproportionally participate in, smarter, more qualified people who work their way up to a position where they could influence people have less of a voice and that may not be good.
I didn’t even think of that angle yet. I’m sure it could play out in ways I can’t currently imagine.

Ways I can imagine: eugenicists flood the platform with harmful data around diseases known to be experienced at a higher rate amongst minority populations.

Far fetched? Maybe not.
Attention is the rarest and purest form of generosity - Simone Weil

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puerile_polyp
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Re: crowdsourced healthcare

Post by puerile_polyp » Mon Dec 06, 2021 10:06 am

I hate doctors. I see them as purely an obstacle to getting the controlled substances I need. Incompetence is really common but mostly it's just a complete lack of regard for my well-being, no hesitation to lie and manipulate me, the condescending arrogance.

The white coats are an essential part of the machine controlling us, standing ready to take away our humanity in service of the state, stoking and feeding off of our fear.

starla
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Re: crowdsourced healthcare

Post by starla » Thu Dec 09, 2021 10:38 pm

puerile_polyp wrote:
Mon Dec 06, 2021 10:06 am
I hate doctors. I see them as purely an obstacle to getting the controlled substances I need. Incompetence is really common but mostly it's just a complete lack of regard for my well-being, no hesitation to lie and manipulate me, the condescending arrogance.

The white coats are an essential part of the machine controlling us, standing ready to take away our humanity in service of the state, stoking and feeding off of our fear.
That's a little extreme imo. I think doctors are mostly trying to help, but also the requirements of licensing tend to filter for a certain personality type. And that type is often arrogant and tends to protect their own at the expense of patients, much like cops. They also don't like to admit that there's a lot that they don't know, and use tricky wording to make it sound like they know stuff that they don't. I.e. "there's no evidence that x home remedy treats y condition" really means that it has never been studied, not that it doesn't work. I feel like they say this kind of thing because they think people won't trust them if they just say "we don't know", whereas I think people don't trust them because they act like they know but they don't.

I think crowdsourcing is one of the first things you should do when you are diagnosed with a condition. Doctors will only tell you about the treatments they know how to do. There could be other treatments out there that are a lot more optimal for your condition, but if the doctor isn't skilled in that treatment or doesn't have a deal with the right company, or their clinic doesn't have that piece of equipment, he or she will never mention it to you. It's best to find out what all the options are yourself, and then seek out doctors who are experts in each of those options rather than rely on a doctor to tell you how he or she is going to treat you.

Crowdsourcing data to assess the effectiveness of treatments isn't very accurate. I would never trust a collection of anecdotes from people on the internet about any treatment. There are enough nutjobs touting the effectiveness of shit like essential oils for me to know that data like that can't be trusted.

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