Article: From Bedside to Bench and Back [about patient driven research in other diseases in the USA]

For most of the past century, scientists and the sick lived in largely separate worlds. Knowledge production was left to a narrow circle of credentialed scientists while patients were recruited to participate as subjects in studies. This traditional, expert-driven research model, reinforced by the growth of large academic medical institutions, meant the road from bench to bedside was long, and it typically ran in only one direction.

That started to change during the 1980s, when patient advocates with HIV/AIDS, and later cancer, began to demand more direct consideration of their needs and priorities. Over the last two decades, the effort has been joined by increasing numbers of patient-led groups seeking treatments for rare diseases.

https://issues.org/bedside-bench-rare-diseases-czi-simoncelli/

 

It's still mostly an aspirational idea with almost zero interest within medicine. At least they're realistic about it:

The resistance of the biomedical research community to patient-led partnerships was made painfully clear during the COVID-19 pandemic. Within six months of the outbreak, thousands of COVID-19 survivors began describing a rolling suite of “long hauler” symptoms, including severe fatigue, brain fog, and breathing difficulties. Congress moved relatively quickly to set aside $1.15 billion to study this emerging problem, but biomedical research was slow to respond. The first study to characterize long COVID was driven not by an academic research institution, but by the Patient-Led Research Collaborative, a nonprofit, then all-volunteer organization started by long COVID patients who were also researchers.​

So things really haven't changed. The model has shown that it works, but so did AIDS. And still, nothing has changed. Medicine is still clinic-centric, all by physicians, for physicians. Patient activists do a lot, but it almost never catches the interest of more than a handful of MDs or PhDs. We build progress and it's just left there to rot, unused. Or harshly fought against, more often than not.

The author is a higher-up at the Chan Zuckerberg initiative, so hopefully they help drive this forward. The only saving grace of the US system is that it allows for innovation that is completely impossible everywhere else. Working with patients will never come from the top, from the institutions, it will come out of grassroots efforts building things to do what the paralyzed institutions can't even think of doing. We will simply do better than them, faster and cheaper, too.

AIDS moved the needle on this to maybe 1% of the way. We're maybe at 2% now. AI will be the defining factor, as the problem is fully human. There are no technical limits here, only a failure of motivation and respect. But for sure with AIs we will do massively better by bypassing the need for massive resources. We have all the stakes. Literally all of them. Meanwhile the institutions have interests. It's basically an aristocratic model, we don't even get a vote.