The Our Future Health project

[ycbm]

Posted here for maximum coverage.

I've just done this and it was easy, one lot of blood, one pinprick test, height, waist, weight and blood pressure. They need 5 million volunteers and it's a hugely worthwhile project.

Taking part

Help everyone live longer and healthier lives and learn new information about your own health

ourfuturehealth.org.uk

 

[littlehicole]

There is something like this in the Netherlands as well, since 2006. I joined over 15 years ago.
A very worthwhile project indeed!

https://www.lifelines-biobank.com/researchers/about-lifelines

 

[Skib]

We were summoned. Over 80

 

[blodwyn1]

I have done this as well it was very useful to get a cholesterol reading when I couldn't get an appt at my GP! A massive project that the NHS seemed oblivious of.

 

[ycbm]

I have done this as well it was very useful to get a cholesterol reading when I couldn't get an appt at my GP! A massive project that the NHS seemed oblivious of.

It's got NHS branding all over the temporary clinics they are driving round the country, but it isn't linked back to your doctor. I was very happy to get my cholesterol reading too.
.

 

[ycbm]

We were summoned. Over 80

It's entirely voluntary, though, have they contacted every 80+ year old? I got a mailshot, no idea why, but having done the physical testing today I got an email asking me to tell my friends about it so I've told the forum

 

[SilverLinings]

It's entirely voluntary, though, have they contacted every 80+ year old? I got a mailshot, no idea why, but having done the physical testing today I got an email asking me to tell my friends about it so I've told the forum

Awww, I've got a friend

Not that it's all about me you understand

I'd heard about the project when it first started but then forgot about it, I will check out the info on the website, thank you for the link.

 

[AmyMay]

Following as a reminder

 

[SEL]

I did it about 6 months ago.

I have a low heart rate but it was particularly low that day and they recommended I raise it with my GP. I did and his feedback was their results are unreliable, don't worry!!

My Fitbit confirmed they were correct.

 

[teapot]

This looks interesting!

 

[LadyGascoyne]

I have done this as well it was very useful to get a cholesterol reading when I couldn't get an appt at my GP! A massive project that the NHS seemed oblivious of.

The NHS is very aware of it. It is a study run in partnership with the NHS, with full Health Research Authority approvals to run in the NHS, and it’s linked into NHS Digitrials https://ourfuturehealth.org.uk/privacy/our-partnership-with-nhs/

It is a research study though, so the results are for research only rather than clinical use.

 

[SilverLinings]

Having looked at the consent form I'm not sure I'm comfortable with the idea of my medical data (including that obtained from medical notes) being shared with other unnamed companies and charities both within the UK and overseas. Especially as the NHS has recently experienced hacking of medical notes and the patient information (complete with names) resulting from that is currently being sold on the dark web.

I'm also not sure how I feel about the fact that as they carry out genetic testing on the blood samples but don't report the findings to the participant someone out there may know that I have a very high chance of e.g. dying from breast cancer or developing alzheimers but I wouldn't know.

I am all for medical research and have taken part in several drug trials and disease research programmes, and one will follow me to end of life, but this is such a vague gathering of data. The vast majority of patients didn't opt out of the NHS decision to share data with other agencies and businesses (I think it was 12-18 months ago that it was introduced) anyway, so other than the blood test this seems like doubling up, and I'm struggling to understand why.

I'm not being a conspiracy theorist, I just want to know the whys and wherefores before I do something.

 

[criso]

Having looked at the consent form I'm not sure I'm comfortable with the idea of my medical data (including that obtained from medical notes) being shared with other unnamed companies and charities both within the UK and overseas. Especially as the NHS has recently experienced hacking of medical notes and the patient information (complete with names) resulting from that is currently being sold on the dark web.

Good luck with finding that, the NHS seem to 'lose' me and my notes and don't seem able to share information within the NHS. The one prescription I found on my NHS app was something I'd never been prescribed but not the things I had.

I got paid to do it for training purposes, to train the staff to take blood and blood pressure etc.

However I'm not sure of the point as they aren't prepared for follow up questions, just say speak to your GP. That will be the GP I've not managed an appointment with for 15 years . When the GP did do their own routine blood tests, they sent a one line automatic text with the results with no possibility to talk to anyone.

There's no point in doing tests if there isn't the infrastructure in place to deal with the results.

 

[LadyGascoyne]

Having looked at the consent form I'm not sure I'm comfortable with the idea of my medical data (including that obtained from medical notes) being shared with other unnamed companies and charities both within the UK and overseas. Especially as the NHS has recently experienced hacking of medical notes and the patient information (complete with names) resulting from that is currently being sold on the dark web.

I'm also not sure how I feel about the fact that as they carry out genetic testing on the blood samples but don't report the findings to the participant someone out there may know that I have a very high chance of e.g. dying from breast cancer or developing alzheimers but I wouldn't know.

I am all for medical research and have taken part in several drug trials and disease research programmes, and one will follow me to end of life, but this is such a vague gathering of data. The vast majority of patients didn't opt out of the NHS decision to share data with other agencies and businesses (I think it was 12-18 months ago that it was introduced) anyway, so other than the blood test this seems like doubling up, and I'm struggling to understand why.

I'm not being a conspiracy theorist, I just want to know the whys and wherefores before I do something.

I don’t work for Our Future Health but I know them well, and one of their trustees was on our board too.

The data is not shared out but rather it is held in a secure data environment and researchers have to log in to see it. The researchers have to submit an application to Our Future Health’s access board:

The Access Board

Our Access Board oversees access to Our Future Health data and samples. Board members include experts, members of the public and participants.

ourfuturehealth.org.uk

And then the applications are assessed to ensure they meet the organisation’s research governance requirements, the approvals that they have received by from research ethics committees and confidentially groups, and aligns to the patient consent form.

The data environment only allows access to de-identified data. You can see how that is set up here https://ourfuturehealth.org.uk/protecting-your-data/how-we-make-data-available-for-research/

And the approved projects are all published on the Health Data Research UK Gateway so you can see the approved studies here https://web.www.healthdatagateway.org/collection/8228652477708278/?collectionEdited=true

It seems to be a very robust system to balance maintaining security and privacy and allowing valuable medical research to be able to access the data. Nothing is without risk but I’m more in favour of data which is being collected for research being used properly and not sitting in a tin, without being able to be put to good work than I am having perfectly secure data which no one ever sees but never generates any medical innovation or improvement for patients.

Personal opinion though, and I appreciate it’s a sensitive issue.

 

[Skib]

If they findsomething serious they do contact GP and tell you too

 

[Skib]

If they findsomething serious they do contact GP and tell you too

 

[thefarsideofthefield]

Both Mr F and I signed up to this when it very first started .
It's worth doing for the health questionnaire alone . My favourite multiple choice question was

Have you had an amputation below the knee
1 ) YES
2 ) NO
3 ) DON' T KNOW

 

[criso]

If they findsomething serious they do contact GP and tell you too

The ones that did mine don't but it was for research. However I think the sheet they give you is the standard one.

I've dug it out and it explicitly says they do not share the information with your GP.

It says in the blood pressure section if your readings are high, then have a pharmacy or GP check within a week and if very high 2 days. In the cholesterol section tells you to inform your GP if over a certain amount. Abnormal heart readings contact GP or 111.

However not really helpful if you can't get to your GP.

 

[Kunoichi73]

I volunteered for this last summer. I've done a number of clinical trials over the last few years and the ethics and security for gathering and sharing information like this are pretty strict.

 

[SilverLinings]

I don’t work for Our Future Health but I know them well, and one of their trustees was on our board too.

The data is not shared out but rather it is held in a secure data environment and researchers have to log in to see it. The researchers have to submit an application to Our Future Health’s access board:

The Access Board

Our Access Board oversees access to Our Future Health data and samples. Board members include experts, members of the public and participants.

ourfuturehealth.org.uk

And then the applications are assessed to ensure they meet the organisation’s research governance requirements, the approvals that they have received by from research ethics committees and confidentially groups, and aligns to the patient consent form.

The data environment only allows access to de-identified data. You can see how that is set up here https://ourfuturehealth.org.uk/protecting-your-data/how-we-make-data-available-for-research/

And the approved projects are all published on the Health Data Research UK Gateway so you can see the approved studies here https://web.www.healthdatagateway.org/collection/8228652477708278/?collectionEdited=true

It seems to be a very robust system to balance maintaining security and privacy and allowing valuable medical research to be able to access the data. Nothing is without risk but I’m more in favour of data which is being collected for research being used properly and not sitting in a tin, without being able to be put to good work than I am having perfectly secure data which no one ever sees but never generates any medical innovation or improvement for patients.

Personal opinion though, and I appreciate it’s a sensitive issue.

I unfortunately have seen from the inside of the NHS how poor some areas of data security are, so however good OFH are as a company I would still be concerned about the data security. I also don't like the vagueness of who the data could be shared with; in theory there may be research studies that I do not agree with morally/ethically and I won't know that my data is being shared with them.

Another thing that I'm not thrilled by is that when you look at joining the project it says you will receive a £10 shopping voucher. If that has been given to all of the 1,665,657 participants so far then it has cost £16,656,570 that I would much rather have been spent on front line NHS services. Research is vital, but at the moment patients are dying because they can't access care, such as the woman in NI who was killed by her mentally ill husband, he had phoned his GP 570 times about the voices in his head before acting on them but all of his calls went unanswered:

Gary Baird: Man who killed wife with hammer rang his GP 570 times

Gary Alexander Baird killed his wife Susan Baird with a hammer at their home in Belfast in 2020.

www.bbc.co.uk

Sorry @ycbm for being negative on your thread, I think the research project is a great idea, it just raised a few questions for me (and I am aware that I can be pedantic).

 

[criso]

Another thing that I'm not thrilled by is that when you look at joining the project it says you will receive a £10 shopping voucher.

I got £50 into my PayPal account for taking part at an earlier stage but that's not unusual. I also got £30 just for a zoom discussion on cancer testing

 

[ycbm]

Another thing that I'm not thrilled by is that when you look at joining the project it says you will receive a £10 shopping voucher.

You have to claim it and you are also offered the option to donate it to the project. I did neither.
.

 

[ycbm]

The discussion about spending money on services now or on research is a thorny one. If you spend money on research that would have kept 10 people alive today if spent on their care, but in future it stops 100 people every year from ever getting the disease, where should the money be spent?

Not my decision to make, fortunately.

 

[dreamcometrue]

I joined this when it first started. They picked up that I had high blood pressure and told me to see my gp and tell them about it. Couldn’t get an appointment with my gp to investigate it for a couple of years because they just weren’t giving them out. They had been taken over by Modality. I finally got some medication a few months ago.

 

[LadyGascoyne]

NHS funding and UK Research and Innovation Funding are also very different sources. Even in government, research generally sits under Science and the NHS is Health.

Companies like ours, and Our Future Health also derive income from the industry research we perform so the research we do is paid for through those commercial research partnerships.

Conducting research like this allows means new knowledge is generated which informs how health issues are understood and treated downstream, but the remit of a research project on population health isn’t going to be to deliver care to current participants or change their care in any way. It is observational, not interventional research, and part of that is watching how the care pathways are working - or not working - for patients.


If you take part, that’s an important thing to understand. It’s not about our health today, it’s about the health of future generations and future patients.

 

[SEL]

Lady G has already covered the different funding sources, but from a data security perspective they will be far tougher than the NHS!

I had type 1 diabetes diagnosed out of the blue in my 40s so have signed up for every trial that would have me, even if those results will never actually help me as an individual. My blood is sat in a number of databases now and if genetic screening finds an oddity that means they can diagnose / cure earlier than that would be amazing. I don't need to know it's my blood that helped.

My low heart rate is nothing compared to my younger brother. He's practically dead. He runs marathons for fun and his GP always said it's the running that resulted in the low heart rate. He's now told them I also have a low heart rate and I barely run for a bus - so something genetic there.

 

[AthenesOwl]

This looks great, thank you for sharing @ycbm These kind of “big data” projects can be so valuable.