4 ms·

Have you totally gave up finding a good online patient community? Recently I have been thinking about this a lot: https://medium.com/@zby/rational-patient-commu

by zby 6y ago

Have you totally gave up finding a good online patient community? Recently I have been thinking about this a lot: https://medium.com/@zby/rational-patient-community-6d3617dffcfe https://medium.com/@zby/rational-patient-community-6d3617dff... What is not there yet is an account on how a family member cured Hashimoto with diet, this is something I would totally dismiss if I read about it on the internet - but I trust her and her judgement. It is possible that it was just a coincidence, but she promised to write a detailed report.

ta_alsotired 6y ago
After the Boston Marathon bombing, Reddit users scoured images available on the internet looking for clues. They were absolutely convinced that they had found the perpetrator. In a self-congratulatory frenzy, people began looking for more and more photos to support their theory. Everyone was energized by this apparent wisdom of the crowds, a miraculous use of technology to convert readily available information into a conclusion that (they thought) traditional law enforcement couldn't figure out. Later, it turned out they were all completely wrong and the whole thing was a disaster. Police had been operating the entire time on data that wasn't available to the public, allowing them to come to the correct conclusion. This is how many of those online health communities operate. They collect anecdotes and combine them with morsels of information from publicly available papers to give themselves a false impression that they're on the cutting edge of research. If you search their history, they've usually been doing it for years or even decades. Their past is littered with dead ends that everyone thought was the next big thing. Meanwhile, they're all convinced that the latest pet theories or the latest supplement hold the key to unlocking the secrets to their illness. There's a minimum amount of online reading that can help direct your own treatment, but getting caught up in the endless posting, negativity, and dead-end theories becomes counterproductive very quickly. Unfortunately, the loudest voices and most frequent posters tend to be the least qualified to be dispensing information. There's an added complication where these people start building their online identities around their illness, which can result in weird turf wars intertwining of egos with discussions.
- zby 6y ago
  My hope is that after we learn the failure modes we can make better online forums. Science had a few centuries to build their model and it still fails in many ways (https://equilibriabook.com/ https://equilibriabook.com/).

by zby 6y ago

ta_alsotired 6y ago

After the Boston Marathon bombing, Reddit users scoured images available on the internet looking for clues. They were absolutely convinced that they had found the perpetrator. In a self-congratulatory frenzy, people began looking for more and more photos to support their theory. Everyone was energized by this apparent wisdom of the crowds, a miraculous use of technology to convert readily available information into a conclusion that (they thought) traditional law enforcement couldn't figure out. Later, it turned out they were all completely wrong and the whole thing was a disaster. Police had been operating the entire time on data that wasn't available to the public, allowing them to come to the correct conclusion. This is how many of those online health communities operate. They collect anecdotes and combine them with morsels of information from publicly available papers to give themselves a false impression that they're on the cutting edge of research. If you search their history, they've usually been doing it for years or even decades. Their past is littered with dead ends that everyone thought was the next big thing. Meanwhile, they're all convinced that the latest pet theories or the latest supplement hold the key to unlocking the secrets to their illness. There's a minimum amount of online reading that can help direct your own treatment, but getting caught up in the endless posting, negativity, and dead-end theories becomes counterproductive very quickly. Unfortunately, the loudest voices and most frequent posters tend to be the least qualified to be dispensing information. There's an added complication where these people start building their online identities around their illness, which can result in weird turf wars intertwining of egos with discussions.

zby 6y ago
My hope is that after we learn the failure modes we can make better online forums. Science had a few centuries to build their model and it still fails in many ways (https://equilibriabook.com/ https://equilibriabook.com/).