'Ourfuturehealth' data/research

Both DH and I have taken part.

I don't understand what you mean by it not being a national thing.

I was going to join and started to fill in the questionnaire, but they asked for so much personal information that I began to worry what would happen if they had a 'data breach', so decided not to continue with it.

I joined.

Yes, they asked a lot of questions, one of which was “Have you ever had Covid?”

“No” I smugly responded.

Guess what I went down with a week or so later?

😷

Those thinking of signing up might like to read this article from MedConfidential before deciding, an organisation that has been striving to protect our health data for many years, whilst certain elements of Government have been keen to give it away, or even release it to insurance companies.

medconfidential.org/2023/our-future-health/

Of even more concern to all of us is the contract that is shortly to be awarded to Palantir, to create a Federated Data Platform to host all the UK's health data, with the right to opt out unconfirmed. Steve Barclay is reportedly hesitating to sign the contract due to concerns being expressed from those attempting to protect the nations privacy with regard to health data.

www.theguardian.com/society/2023/oct/12/everything-you-need-to-know-about-nhs-englands-biggest-ever-it-contract

Of course it is important that truly anonymised data is available for research purposes, so that new treatments can be developed, but it needs to be done securely, and with consent.

Removing your name, part of the address (usually first part of postcode is retained) and date of birth will not prevent you from being identified if you have a particular set of conditions, or even one rare one. There are those such as abuse victims, or those who have had secret abortions, who would be very frightened about the possibility of being identified.

If you would like to stay informed on what is happening with your health data, you can sign up for MedConfidential's newsletter.

I have no axe to grind other than as a health informatician concerned about what is going on. I have a huge respect for Phil Booth and Sam Smith who are fighting for our rights to data protection, relying on donations to do so.

Thanks [B9exchange] - Not very reassuring! Don't fancy their 'profile' at the moment. Very vulnerable to data leakage, and focussed on illness rather than health.

I’m part of the UK Biobank project, which sent out an email saying that In order that the evidence generated in UK Biobank can be tested independently in Our Future Health, it would be scientifically better for people not to take part in both studies (although you may participate in both if you wish).

So no.

Ah, interesting - just received a letter about this today.

Kittylester - I meant not NHS - I gather it is funded by pharma research companies, NHS and a charity - in no particular order.

The BBC item featured Hugh and Fergus happily signing up and heartily endorsing it - did not at all make it clear that it is not a .gov.uk initiative - can't trust the Beeb any more than the Mail these days. Perhaps it was always so and I was less sceptical...

Like Maggiemaybe I am part of the Biobank project. Thanks to a scan they gave me last Easter, my doctor was alerted that I might have osteoporosis. I was sent for a full scan amd I do indeed have it and am now taking alendronic acid.

The UK Biobank data has been accessed by more than 8oo reearch projects and has provided data for 100s of scientific papers. It made a major conribution to the study of COVID, which was one of the reasons both the vaccine and effective treatments were developed so quickly.

sandelf of course Future Health is more focussed on illness and health, so is the UK Biobank. If we were all healthy and well we wouldn't need a Future Health project. When they assess you, if you have high blood pressure, high cholesterol or high blood sugar, it will show up and they are ethically required to tell you and advise you on what you should do. If you have none of these problems they won't be mentioning them to you.

Assuming Future Health works like the UK Biobank. All they will do is collect data from you, never make any approach to you based on your personal information.

Projects like this have absolutely no interest at all in those taking part, as individuals. All they are interested in is data from 1000s, 10,000, and millions of participants and how it can be analysed.

However I very much doubt if they will be 'pushing' you to do anything, merely innforming you. When I had my baseline scan back in 2007, they noted that my blood pressure was raised and that I was a bit overweight and advised me accordingly, but no-one chased me after the survey,

Last year I had a nother baseline survey and I was given a sheet at the end that listed that my blood pressure was raised and that I was a bit overweight, but this time I also had MRI and Dexa scans, and although they said this survey was primary a data survey they did say all scans would be seen by a doctor and anything that needed treatment or could be a source of later problems would be flagged up. Hence my osteoporosis being flagged up.

BioBank have been caught out passing on health data to insurance companies. www.theguardian.com/technology/2023/nov/12/private-uk-health-data-donated-medical-research-shared-insurance-companies

They have also been giving genetic data to China www.theguardian.com/science/2022/aug/20/fears-over-chinas-access-to-genetic-data-of-uk-citizens

The problem with giving confidential health data to private companies is that they will make commercial use of it, selling to the highest bidder. If this doesn't worry you at all, then it is to be hoped that genuine UK researchers can also make use of it and some good come out of it, but if would be so much better if the NHS looked after its own data platforms

I am a Biobank member and I am profoundly indiffeent to the fact that some of the anonymised data has got into hands that might, just might pass into non academic research studies.

B9Exchange It is quite clear that you have not checked the Biobank site nor seen the many references in the media to the important research that the data , I and all the other Biobank members have contributed to.

I suggest you look at this page of the Biobank site - and the 323 pages that follow listing all the research published using Biobank data. You will then understand my continued total willingness to contribute to this research project
www.ukbiobank.ac.uk/enable-your-research/publications

Letter came a few weeks ago and I've signed up.
I'll be having a 'baseline' gathered in a couple of weeks. I know I'm a little overweight, my BP is fine. I'll be interested in the cholesterol results but I'm not expecting any health advice - this is a research project.

B9exchange

BioBank have been caught out passing on health data to insurance companies. www.theguardian.com/technology/2023/nov/12/private-uk-health-data-donated-medical-research-shared-insurance-companies

They have also been giving genetic data to China www.theguardian.com/science/2022/aug/20/fears-over-chinas-access-to-genetic-data-of-uk-citizens

The problem with giving confidential health data to private companies is that they will make commercial use of it, selling to the highest bidder. If this doesn't worry you at all, then it is to be hoped that genuine UK researchers can also make use of it and some good come out of it, but if would be so much better if the NHS looked after its own data platforms

How much would that cost?