It seems we are now grist in a mill to feed our data to big pharma

[Subtle_badger]

healthunlocked.com/latest/p...

HealthiVibe uses a systematic, evidence-based process to help pharmaceutical clients spearhead patient engagement initiatives at every stage of the product lifecycle.

Their clients are pharma, and they are interested in products, not our health outcomes. I will just ignore the newspeak "building on the mission" 🙄

What do you think, TheAwfulToad ?

[TheAwfulToad Ambassador]

LOL. Corrona LLC. I bet they're regretting that choice of name these days.

I sort of knew there was something like that going on behind the scenes - after all, HU has to make its money from somewhere, and as far as I can figure out they do it via the sale of data. The precise nature of this data is not disclosed - they say it's from surveys and whatnot, but that seems rather unlikely.

I continue to post here despite that rather shadowy "mission" because they have a lot of visibility thanks to their cozy relationship with the NHS (again, undisclosed). So it's a good platform for promoting healthy eating.

But yeah, pharma companies. I have an acquaintance who's in biotech and he's firmly convinced that they're wonderful people on a mission to save the world ... this year with cv19 vaccines. On that subject, it seems to me that, the moment it was understood that people with metabolic disorders are at high risk of death (or at least of wasting a lot of public money in the ICU) the NHS should have got that message out there front-and-centre, and told people how to fix their metabolic disorders. That in itself would have helped "flatten the curve", since a clinically-significant reversal of Metabolic Syndrome only takes a couple of months. But this appears not to be a popular view. It's certainly not one shared by Big Pharma, who would lose a lot of money if 10 million Brits suddenly dumped their statins, diabetes pills, blood-pressure pills, etc etc.

[Subtle_badger in reply to TheAwfulToad]

I'd assume the funding was going from people like the NHS and BHF, which can build communities for cheaper price than running forums themselves.

Indeed that may have been true. It is definitely not now.

[Midori]

I'm suspicious, so I've already asked how I opt out!

Cheers, Midori

[Whydothis in reply to Midori]

Please keep us informed!

[Whydothis]

I notice today that when I go to "my hub" to go to my choice of communities, I am being invited to join "programs" - it will be interesting to see how this develops. It could be another way of getting us to tell the system more about ourselves.

I have no wish to sign up to let them tell me what to do, but I do note that in their list of programs, one about cholesterol is adjacent to one called Understanding clinical trials!

[Subtle_badger in reply to Whydothis]

I think the programs where there before today, but it's impossible to prove.

The clinical trials thing is interesting. Their plan for this site could be clinical trial recruitment, and that's not necessarily a bad thing. It would be of value to their clients to have a pool of people with the medical condition they are interested in. The best way to have that pool of people is for this site to provide the best support it can to those people. You want them to find it helpful, and to stay and to help others. Recruiting clinical trials could ironically work in our best interests, and it's easy to ignore any recruitment posts if you aren't interested.

[Whydothis in reply to Subtle_badger]

I have no objections to being invited to join clinical trials - as you say, it is possible to ignore them if not interested.

I get the impression that the programs will be more about giving information - they have titles like "Living with ..." . I am getting a message telling me that I have not enrolled in any yet - but the links are not actually active, so it will be interesting to see. If they prove to be advice, rather than peer discussion, I hope they don't dilute the forum, as I think the main value of this forum is the variety of ideas and opinions.

[Midori]

I have opted out of allowing them to access my medical data. You go to your avatar which brings toy up next to 'Settings' Click it and you will find the place to opt out.

[Whydothis in reply to Midori]

Done it - thank you.

[Ianc2]

Is being a member of this site helping to advance our understanding of medical conditions? I belong to the UK Databank and if I can share my medical details to help develop more effective treatments I will be happy to do so.

I have concerns about the creeping privatisation of the NHS and look with horror on the antics of the politicians in America, but that is a different matter.

However if I can provide any information that just might make a difference I will be happy to do so . As Freddie Mercury said 'who wants to live forever'

[Subtle_badger in reply to Ianc2]

Pharma are not interested in improving health outcomes, they are interested in selling drugs. Sometimes that works in our interest, and sometimes not. They are certainly not interested in treatments that don't involve their drugs, and HealthiVibe would not be interested in treatments that don't involve any of the clients.

UK databank is brilliant. I turned down my invitation to join, but can't remember why. Good on you for signing up. But it's not aligned with drug companies, so not the same at all.

[Midori]

Hi Subtle Badger,

There is a way to prevent Pharma getting access to your information. Go to your avatar at the top of the page and click it. A dropdown list with your settings will appear, In it is a tickbox which you can change so Pharma cannot get your info.

Cheers, Midori

[Subtle_badger in reply to Midori]

Thanks. I already had that set up, and anyway I haven't shared any data here, except part of my postcode and my weight.

But that's good advice to everyone.

My concern is broader, that this site may be subverted by drug company interests. But keeping the site much as it is, or even improving engagement may be in their best interests, so hopefully my fear is unfounded.