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

[Kitty]

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.

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.

 

[Utsikt]

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.

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.

 

[MrMagoo]

It’s the app trap.
It’s added value, isn’t it? Building and supporting the community. Ethically approved research happening now, near you, you can click and sign up. Part of their offering alongside podcasts/blog posts etc.

 

[MrMagoo]

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.

Lots of people should know lots of things but they, in practice, do not.

 

[Kitty]

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.

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.

 

[Utsikt]

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

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.