**SCAM!!! They are a total scam. I cannot reach them by email or chat. I had 1 consultation in the beginning with their doctor, they said they needed blood test results but now I can't get a hold of anyone either by chat, email or phone. Plus they have already charged me membership fee plus medication cost that I have never received for 2 months.
There was NEVER any mention of a membership fee. SCAM!!
This sounded like a great project, so I signed up. I live in South Shields, and the nearest Boots who do the initial testing is 70 miles away, in Yorkshire! I imagine this will mean the vast majority of people living in the north east won’t get involved, which, considering the average lifespan in this region is lower, seems quite an omission.
I completed the online questionnaire, made a appointment to have a health check (nearest centre 4 miles away) on visit gave blood samples to help others in research. 6 monthls later Still Waiting for the £10 promised for my participation. Maybe I just wasted my time and petrol as the test results are not given to the participants.
I signed up many months ago but only had my appointment/blood test yesterday. I'd been waiting for a clinic venue near me and eventually a (temporary) mobile clinic was set up in a near by town.
This is an interesting point Greg and in many ways I can agree. But, to play devils advocate, if you don’t mind sharing, what is it specifically that in the worst case scenario you are concerned the NHS will do with your data? And if they did it, what harm would it do to you or others?
If they sold it to a company 10 years down the line and that company used the data to better understand it’s market and sell things for example, it doesn’t seem like that really causes that much harm compared to the potential good that comes from the research does it?
Its basically an attack on my autonomy. Its also lies - we're told healthcare is based on consent, and they are doing everything they can to use our data without consent.
How many lives would care.data have saved by now if that was done on a consensual basis rather than being binned because it was all underhand?
And the NHS manipulating the definitions of words such as 'anonymised' to make people believe their data is anonymous when it isn't - by doing all the processing before removing identifiers
**SCAM!!! They are a total scam. I cannot reach them by email or chat. I had 1 consultation in the beginning with their doctor, they said they needed blood test results but now I can't get a hold of anyone either by chat, email or phone. Plus they have already charged me membership fee plus medication cost that I have never received for 2 months.
There was NEVER any mention of a membership fee. SCAM!!
This is not Our Future Health- there’s no fee involved. Can I just check that you have signed up to this not something else? https://www.google.com/url?q=https://ourfuturehealth.org.uk/&sa=U&sqi=2&ved=2ahUKEwjI5tji2N-HAxVmTEEAHbsGOQEQFnoECAgQAQ&usg=AOvVaw0052DBZiMLq7V-rCHYk8Vq
This sounded like a great project, so I signed up. I live in South Shields, and the nearest Boots who do the initial testing is 70 miles away, in Yorkshire! I imagine this will mean the vast majority of people living in the north east won’t get involved, which, considering the average lifespan in this region is lower, seems quite an omission.
I completed the online questionnaire, made a appointment to have a health check (nearest centre 4 miles away) on visit gave blood samples to help others in research. 6 monthls later Still Waiting for the £10 promised for my participation. Maybe I just wasted my time and petrol as the test results are not given to the participants.
I am a Biobank participant, so I think they know all about me anyway
I signed up many months ago but only had my appointment/blood test yesterday. I'd been waiting for a clinic venue near me and eventually a (temporary) mobile clinic was set up in a near by town.
You keep saying privacy concerns are overblown, I keep saying they're not. That's why more use isn't being made of healthcare data.
If people aren't asked for their consent, then its a privacy concern. This project asks for consent, but I still wouldn't trust the NHS with my data.
If people want more use of healthcare data, then they need to deal with the privacy concerns.
This is an interesting point Greg and in many ways I can agree. But, to play devils advocate, if you don’t mind sharing, what is it specifically that in the worst case scenario you are concerned the NHS will do with your data? And if they did it, what harm would it do to you or others?
If they sold it to a company 10 years down the line and that company used the data to better understand it’s market and sell things for example, it doesn’t seem like that really causes that much harm compared to the potential good that comes from the research does it?
Its basically an attack on my autonomy. Its also lies - we're told healthcare is based on consent, and they are doing everything they can to use our data without consent.
How many lives would care.data have saved by now if that was done on a consensual basis rather than being binned because it was all underhand?
And the NHS manipulating the definitions of words such as 'anonymised' to make people believe their data is anonymous when it isn't - by doing all the processing before removing identifiers