Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

Utsikt said:
As people in tech, they should really know that the purpose of a system is what it does. Not what it’s intended to do.
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The barmy thing is that the intention is to help with the 'problem' of trial recruitment.

So they could just write an article explaining some of the issues, and then suggest sources of information and advise people to vet trials carefully and ask questions before signing up.
 
Kitty said:
The barmy thing is that the intention is to help with the 'problem' of trial recruitment.

So they could just write an article explaining some of the issues, and then suggest sources of information and advise people to vet trials carefully and ask questions before signing up.
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I think the «near you» function adds value, if it works they way I think it works (I don’t have the app), because the .gov site is clunky.

The core of this is that they can’t abdicate from the responsibilities of their actions, but at the same time they are not equipped to handle them. They’ve created a problem that can’t be solved in its current format.
 
Utsikt said:
As people in tech, they should really know that the purpose of a system is what it does. Not what it’s intended to do.

They are lending their brand, their platform and their technology to the researchers, indiscriminately. Wether they like it or not, Visible will be associated with the researchers, and they researchers will be associated with Visible.

Hiding behind ethical approvals is not good enough, and if it’s not feasible to vet the studies, they at least have to acknowledge that they will be directly contributing to patients being harmed because the patients would not have come into contact with the researchers without the intervention by Visible, and that they consider the benefits (primarily faster recruitment to good studies) to be greater than the costs.

Although with the ethical and moral duty to first, do no harm when you’re in the field of healthcare (which they most definitely are), it could reasonably be argued that the costs are not acceptable.
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Lots of people should know lots of things but they, in practice, do not.
 
Utsikt said:
I think the «near you» function adds value, if it works they way I think it works (I don’t have the app), because the .gov site is clunky.
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I dunno—it allows you to search by condition, then refine by state, city, or even postcode. I just tried it using long Covid as the disease and a random state name, and it's as straightforward as it could be. You don't even have to navigate away from the landing page to find the search, it's in the sidebar.

Clinicaltrials.gov.png
 
Kitty said:
I dunno—it allows you to search by condition, then refine by state, city, or even postcode. I just tried it using long Covid as the disease and a random state name, and it's as straightforward as it could be. You don't even have to navigate away from the landing page to find the search, it's in the sidebar.

View attachment 29568
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Huh, that’s better than I remember. I think my main gripe was that it was difficult to find a trial I was looking for because I had no idea about which names they had used for the condition.
 
Kitty said:
I dunno—it allows you to search by condition, then refine by state, city, or even postcode. I just tried it using long Covid as the disease and a random state name, and it's as straightforward as it could be. You don't even have to navigate away from the landing page to find the search, it's in the sidebar.

View attachment 29568
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One thing I learnt when designing things is never to underestimate how much larger the impact is of something shown passively than something people have to look for.

I don’t think there is a doubt that a high traffic app showing this quite openly will have far more impact just because it reaches so many more eyeballs.

People here who dig in and search and dig deeper are not representative of the average user.

This of course is besides the problem of bad trials being shown.

(Edit: Horrendous spelling fixed)
 
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Kitty said:
@Daisy, is there more than this to your message (other than the screenshot)? They often stop mid-sentence, but the content suggests you probably wrote more! I can't quite work it out!
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Sorry I wasn't clear. What I said was just paraphrased from the very short message on the app.

There is a longer message from Harry at visible on Reddit which I hope you can see ok. It's a pretty good mea culpa.
https://www.reddit.com/r/cfs/s/o8G9xOhcHM

(Edited for spelling)
 

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Post on reddit by Harry (visible cofounder).


(snippets)
Visible does not endorse, partner with, or agree with the views of Trudie Chalder.
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We specifically reject her work on Graded Exercise Therapy (GET). We know this is a harmful narrative that has been rightly debunked, and we know the damage it has caused to the ME community.
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For now, we are have temporarily turned off the Clinical Trials Near You feature. We have taken this action instead of removing an individual trial, because it is likely that other trials could have similar concerns raised. There are thousands of trials in the central registry, with many more being added each week. If we tried to review and approve all of them we would delay access to research and inevitably miss things. Instead, we are going to explore building a mechanism to support community moderation of trials.
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Thank you for holding us accountable, and for helping us build something better.
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Edit; Oops I see I double posted with Daisy. I’ll keep my post since I added quotes.
 
In the comments he mentions that they are considering adding a feature to let patients flag studies. I’m not sure if it’s ideal, but I hope this only includes warnings, and not endorsements, because otherwise you’ll end up with a lot of biobabble being pushed.

They should also be aware of the narrative it might create it only BPS trials are flagged, especially if they allow comments.

They might want to restrict it to pre-defined flags that would be relevant to the patients that would like to participate, such as: significant potential of harm, insufficient protocol, insufficient attention to adverse events, etc.

Edit: they would also need a disclaimer explaining that unflagged studies might also have issues (or have not been flagged yet), and that Visible doesn’t endorse or warn against any trial in particular, or are responsible for the flags.
 
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BrightCandle said:
A lot of LC and ME patients defended visible on this especially after their statement. Neutrality is a pretty hostile position to be taking in this area of research especially neutrality that ignores all the history and especially the people who caused those historic harms.
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Popper’s paradox of tolerance comes to mind:
"[...] But we should claim the right to suppress them [intolerant ideologies] if necessary even by force; for it may easily turn out that they are not prepared to meet us on the level of rational argument, but begin by denouncing all argument; they may forbid their followers to listen to rational argument, because it is deceptive, and teach them to answer arguments by the use of their fists or pistols."
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He essentially argued that we should accept intolerance if the intolerant are willing to engage in rational arguments. The BPS crowd have clearly shown that they are not willing to do that, and therefore we don’t owe them neutrality.
 
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