Potentially exciting app

[HollieBerry]

I came across this app for people with autoimmune illness’s - to all come together and share experiences of treatments, medications, supplements etc... what works best basically! A correlation of data. I haven’t joined yet... got excited and wanted to share the link first 😬

stuffthatworks.health/

[desquinn Partner Volunteer FMAUK Trustee]

Not got time to answer fully but the site is using the power of the crowd but the data sampling means the results are not great and not representative for fibro at least.

[LoneEra]

Does look interesting...and we’re always desperate for new things to help...but I agree with desquinn on this one. It’s not based on scientific evidence, it’s anecdotal. Also, if you look at the company behind it, it’s a “for profit” organisation based in Israel. There is a tech hub in Israel (so that’s not unexpected) but it’s important to realise that it’s not a charity. I’m not trying to put anyone off from using it - but just be aware what you’re signing up for 🙂

[desquinn Partner Volunteer FMAUK Trustee]

Had a conversation in october about this within the charity and this was my email reply to it.

Stuff that works email reply: fibroaction-my.sharepoint.c...

summing up if you say the most effective treatment is something with 243 reports then this is a big data sampling issue and cannot be trusted to make decisions of. Principle of platform is good but my cosmetics example is perhaps the best example of its misuse. If you watch a hair shampoo advert and they say 80% thought it was the best ever then that's great. But look down the bottom and it says 103 respondents then you can see it is not representative.

I always love this example:

Cosmetic advertising trials evidence ☹

“‘The ad boldly claims that the new product leaves hair ‘more shiny and clean looking than ever’,’ said a spokesperson for the Advertising Standards Authority, ‘but the text which appears briefly at the bottom of the screen shows that only ‘9% of 11 women surveyed agree’.’”

newsbiscuit.com/2012/05/04/...

[LoneEra in reply to desquinn]

🤣🤣🤣 Gotta love a bit of “data”. To be fair, the app does now have 48,000 odd users in the fibro community apparently. But still, it’s hard to tell how big the data samples will be on any particular drug or treatment discussed - and it should be taken with a pinch of salt.

[desquinn Partner Volunteer FMAUK Trustee in reply to LoneEra]

yeah saw the head count but if you look at the report count on the treatments it is weighting responses irresponsibly. Don't know what std dev or corrections are being applied.

Its a great idea but the top 5 or 10 is irresponsible IMO in the same way as the hair advert or the sun saying red wine is good or bad for you after skimming the latest preprint paper

[LoneEra in reply to desquinn]

Agreed! I work a lot with tech startups like this and many of them are just looking to be different for the sake of it and not really thinking about the impact on the end user, sadly.

[desquinn Partner Volunteer FMAUK Trustee in reply to LoneEra]

Look at me!!!!! Look at me!!!!! Look at me!!!!! Look at me!!!!! Look at me!!!!!

ethics and business objectives are difficult bedfellows.

[LoneEra in reply to desquinn]

Hahahahaha!