The New Yorker - What would it mean for scientists to listen to patients?

[Kalliope]

What would it mean for scientists to listen to patients?

quotes:


People with post-viral illnesses often feel shut out of the scientific establishment. Two renowned Yale researchers are attempting to bring them in.

...

Usually, investigators will identify a few patient representatives to sit on an advisory group. Krumholz and Iwasaki, in contrast, envision their study as a “safe space” designed to consider participants at every step of the discovery process. Theirs is an exercise in transparency that has few precedents in clinical science. Like local politicians showing up to regular community meetings, they open themselves to the good, bad, and out-of-left-field commentary of their entire constituency.

...

Like act up, contemporary patient advocates work at the intersection of medicine and activism; they petition and protest the same leaders and institutions that they depend on for treatment. The aids movement’s successes provide the benchmark for what can be accomplished in relatively short order when patients apply pressure and scientists yield in response. But that movement’s tensions—questions, for example, about urgency versus methodology—also hang over this one.

 

[Midnattsol]

Or one can follow the lead of the lightning process study researcher at NTNU, who on a TV debate disappeared when patient representative Nina Steinkopf joined and the host explained it as "as a researcher you don't talk to patients"

 

[Arnie Pye]

Or one can follow the lead of the lightning process study researcher at NTNU, who on a TV debate disappeared when patient representative Nina Steinkopf joined and the host explained it as "as a researcher you don't talk to patients"

Did the panel guest who walked out ever give their reasons for leaving?

 

[Midnattsol]

Did the panel guest who walked out ever give their reasons for leaving?

Both he and Steinkopf were on video call. The researcher talked to the host about the study and then when it was time for Steinkopf the host said the researcher would not be there for this segment with the quote that he as a researcher did not speak to patients. So what he actually said to the host was not shown on screen. I found a post of mine right after the debate:

Just saw the Dax18 piece. At one point the reporter says "As a researcher you Kennair does not want to talk to patients or their carers". Wow, just wow.

@Kalliope did a full transcript that can be read in the Lightning Process study at NTNU thread starting from post #673. The quote from Kennair is at the end of this post.

 

[ahimsa]

What would it mean for scientists to listen to patients?

Thanks, @Kalliope

I wasn't able to read the whole thing but what I did read was interesting. Bookmarked for later.

 

[SNT Gatchaman]

Written by Rachael Bedard MD https://www.rachaelbedard.com/

I’m a physician. In my practice, I am generally against flinging spaghetti. When there aren’t randomized control trials or even large-scale observational trials to guide treatment, I tend to feel I’m working in an evidence-poor zone, and proceed conservatively. Many post-viral patients, however, might dispute my view of the literature in this area and consider my approach withholding. There are, after all, thousands of studies published about novel interventions for ME/CFS, chronic Lyme, and Long covid. The distinction between my approach and a try-anything-that-might-work approach revolves around fundamentally subjective matters: what types of evidence one considers reliable enough to act on, how one interprets “first do no harm,” and how one calibrates risks and benefits.