Agreed.
The data collection is the product and the rest around it is just the gift-wrapping which could well mislead people on informed consent
I definitely have memories of there being issues with IAPT not sharing their data to researchers who weren't likely to produce research that was 'friendly' to their cause.
The DHSC is not the NHS - and I think that we need to work on unbundling and underlining this distinction.
The DWP isn't the health service either
1. Who is getting therefore an individual's non-anonymised data? So I agree thoroughly with
@Maat below underlining this issue.
And it is almost an even bigger informed consent issue if the app uses some of the very good Bateman-Horne material like the cards or tips for preparing for a crash type thing. A clinic that operates very differently and is genuinely curious and will take at face-value anything someone writes and be curious about understanding it,
But then instead what people's data when they fill it in will be going to is instead a UK BACME clinic that is utterly the opposite: rather than invalidating focusing on thinking pwme deserve no autonomy or rights and targeting them with weaponisation of mental health powers they are neither due by the illness, their expertise nor their training/license.
So it becomes a switch-and-bait on consent.
And who has powers it seems to write letters demolishing someone's life forever - to GP, employer and other organisations. I
And who knows if said data is being accessed by the organisations directly as part of this anyway?
2. Who is getting the aggregated data?
And if it doesn't fit in with their agenda will it be disappeared, as been common?
Will it be cherry-picked despite the fact we have a condition that is all about patterns over days, weeks, months. The only research bps and BACME have produced has been full of these dodgy flaws so we have to assume this issue
Is there any other medical condition where people are banned from seeing a GP
or any other medical doctor of any kind - whatever other illness they have - and then required to fill in personal data on their own body daily to the DWP and government department of health which focuses only on behavioural stuff: pwme are ill because they won't run marathons and don't get up at 7am including the weekends? replace ME with any other serious health condition and you'd hope someone would bat an eyelid but this dystopia seems to have been sold as what we deserve - and has nothing to do with good intentions or us having good outcomes healthwise.
3. Is it even secure?
Given how devastating potentially having a list of those labelled with ME/CFS even can be for an individual regarding their employment or access to services. This isn't about 'just' security-level for another illness where there is some list of people who have it then getting out. I do think that this is indeed definitely where the comparison with AIDs/HIV in the 80s/90s is absolutely accurate - people trying to play it down as if its a little bit of stigma and boo-woo 'getting upset about mentioning mental health' just shows how abusive the system and society is to us, that they won't even acknowledge what they've created as a nasty non-life, you can't exist as a person or have your truth, for us to be caged in.
4. Is there coercion forcing people to sign up to this despite all of the human rights issues above?
Given what I have heard about some clinics then I expect so. People will be further labelled as non-compliant and threatened with more devastation of their life, career and reputation falsely - along probably with threats of ... let's call it what it is: incarceration and removal of freedom and autonomy potentially for the rest of your life with no proper legal trial, but instead a system focusing on war of attrition and false accusations that noone can disprove.
Basically people will very quickly be told how limited their rights are and how vulnerable they are once they've been bucketed into that diagnosis. And given option 1. of play the game/pretend you are well or risk option 2 which is brutal.
That's what ME/CFS 'treatment' and the 'behavioural psychology' behind it has been and seems to want to continue to be in the UK.
The coercion of 1. seems to me now be being used to not only force people into providing the most intimate, daily data about themselves - which no criminal would have imposed on them - and that data itself can now be used untransparently to make it more impossible to evade option 2.
I'm not sure that those running this app have any idea of the brutality of the regime that has been suffocating pwme for all these years - the sheer extent of what they are getting involved in. It may come to those with long covid over time but hasn't been as prevalent/dominant and so they really need to think about what they are getting into bed on. And yes it matters that these are people terrified that what has been done to them over and over to make them more disabled will be repeated at harm yet again because they have been made that bit more vulnerable by that regime. Even though I appreciate them taking on board the feedback of what are the better materials etc themselves for what people might read on the app, it is a completely different bunch that is having the data passed onto them and they aren't in control of that.
and that the weasle-words from the same people say their intention is the exact same thing with more impenetrable branding. Why would they, because unlike some of the scandals we are seeing coming through, even if there weren't issues with those who might expose it being put off for various reasons, these people are so ill and boxed in and perhaps are stuck eg in hospital situations or other types of 'case' of various types where they are not permitted to even talk about it.
So, even if you are in a group where you actually can, if telling your story comes with massive risk, but is the only way of survival 'if something changed long term' but the chances of anyone doing anything with it that is good and changes think are so small and come with huge health costs from the energy and the labels you have been given errantly make your testimony weakened for no reason..
