Our Future Health

[Frederik33]

Heard about this on the radio the other day and it got my attention.

It sounded a very good idea and if taking part prevents others from getting serious illnesses in the future then I think I would be a willing guinea pig.

Apparently you have to go to a clinic local to you - I'm in Greater Manchester, one of the trial areas and have BP, height, weight recorded, blood tests and genetic screening.

Just interested to know if anyone else is considering volunteering for this

Tia

I have received an invitation letter but haven't yet decided if I should take part. It seems a good idea but they have full access to medical records and I can't decide how I feel about that

I've put my name down but I'm not in one of the initial areas.

I joined the UK Biobank research in 2006, they collected medical and genetic information for research and I underwent various tests physical and blood tests. We were told at the time that, for the purpose of research all information gathered was anonymised. The only proviso was if they found something that could be serious they would inform your GP and this was because ethically if they knew something about you that could be treated, then the information needed to be passed on - any further investigations and treatment would be via the GP. People between 40 and 69 were invited to join this study. These people will now, if still alive, be 57 to 85.

In the interim the only thing that has been asked of us has been to complete some online memory/response speed tests.

This year we have been given the opportunity (asked not demanded) to add to the previous knowledge and conduct further testing. I am going in early November and whereas the previous testing took a couple of hours I have been told I will be there for around 5 hours this time and the testing will include brain, heart, tissue and bone scans. Whilst it isn't intended to benefit us, and we won't receive actual results again, should they find anything important, the GP will be informed and it will be followed up at local level.

This research you have been asked to volunteer for will, I'm sure be conducted just as ethically. It will all be anonymous and just linked to a number. The only information that will be shared non anonymously, is if they find something important that you need to know about. Anything else just wouldn't be ethical.

Thanks @NannyGythaOgg
Very informative

Yes, I've started reading the details on Monday but haven't actually got around to complete my application.
A reminder email came through not long ago tonight.

Definitely want to join, if it helps future generations that would be great.

I don't quite understand one aspect. They say other research programs might be interested in using data and they might contact the participant to ask them to join their specific research. That's because the data will be shared. But if it is kept anonymous, how would they know which participants are the useful ones for other research? No idea.
I understand they keep and share whatever measurements they take and they capture ongoing relevant health related information from the participant's health records.
No idea how it will work in practice and what happens if you move abroad.

The data would hopefully be of some after I die. And I don't have a problem with any data collection related to my health. So I'll go for it.

ourfuturehealth.org.uk

Your information will be stored under an anonymised number. Should future research want further information from someone with your results then they will contact this research via your number and you will be given the opportunity of responding. Your identifying information will not be shared directly with them but will be used to inform you of the opportunity to engage in further research with the new company. It will then be up to you to engage directly.

Coincidently I have recently received communication from Biobank about this research, which includes

"...have seen the announcement earlier this week that a new research project called "Our Future Health" is starting to invite people to participate - much like we did about 15 years ago with UK Biobank.
Our Future Health, which is funded by the Government, charities and pharmaceutical industry, aims to assess the detection, prevention and treatment of disease in the NHS.
We are supportive of this new project, which is complementary to UK Biobank.
It will build on the work of UK Biobank which has successfully demonstrated how to establish large, long-term population studies in the UK and allow researchers around the world to use de-identified information about the participants to make important discoveries about ways to prevent and treat disease.
UK Biobank's success is of course down to you, the half million participants who generously agreed about 15 years ago to make information about yourselves available for health-related research.
Our Future Health does not know that you are already a participant in UK Biobank, so you may receive a letter from the Our Future Health team asking you to join the project.
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)."

which I found interesting.

I was going to say what @NannyGythaOgg said.

Those of us in the UK Biobank study have been told it would be better (scientifically) if we didn't.
It is good to know that I am doing my little bit through the UK Biobank study though, so, if I weren't doing that, and were offered the Future Health one, I would certainly help them out.

Just had this done today and I can honestly say worth making the effort. What they are looking for in your blood samples (two vials are taken from one needle insert) are markers that may indicate risk of heart attack, stroke, diabetes, dementia. They also measure your height, weight and stomach area. It is a one off attendance and they only contact you later if something shows up in the bloods that needs attention. In the meantime you find out your cholesterol levels whether good or bad, whether your sugar levels are good or bad and get given sound advice. Nothing to be worried about. It is a free service and well worth the effort of making the time to do it. I have heart and blood medical issues already and, without saying anything my tester was spot on.

Just signed up but no local clinics available yet for the blood test.

I began the signing up process. The aims of the organisation seem admirable, and this sort of mass research has worked well, for instance the Zoe project. I started the questionnaire with the section "about your household" which begins with questions about my sex change. Which I haven't had. I decided not to bother going any further and tried to withdraw. In order to withdraw I have to ring an 0808 number. Almost as though this were a hard sell, trying to force something on me.
Apart from its admirable aims and government backing this has many of the hallmarks of a scam.

I got the letter a couple of days ago and am booked to visit a mobile clinic in a nearby supermarket car park this afternoon for them to take blood etc

Seems like a worthwhile study and will hopefully help future generations

I received a letter through the post about this and I'm a little unsure. I'm all for research and fully understand without volunteers research would be very limited however the thing that's got me unsure is at the top of the letter it states In partnership with the NHS that does make one wonder about confidentiality and the storage of results I'm far from technically minded however you read and see on the news about companies loosing data and information. The other thing I'm unsure of is locations with today's costs no one can afford to travel for miles even if it's for a good cause. I'm kind of on the fence at the moment and rather unsure as I guess I have a few questions that need to be answered to be one hundred percent sure.

I totally forgot about this. My area wasn't available last time I looked, but it is now so thank you for bumping the post.
I've signed up and have my blood test appointment in 2 weeks.

Has anyone participated in this and been advised to contact their Dr? I got told to see my Dr re v high cholesterol results. However, my practice haven't heard of Our Future Health and don't understand why I need to see a Dr as my tests aren't on their system. Feel like its not really an emergency as I'm otherwise healthy - not sure what I'm supposed to do and there is no follow on from Our Future Health either.

@Nin93 Do they print out your results for you? In your shoes I would contact the surgery and say you've got a high result from elsewhere in the NHS and ask the surgery to do a blood test. Depending on the results they can book you in to see a GP. Interested to know what they class as "very high". My blood test is booked for Friday.

I've signed up, blood test on Saturday
There's a massive history of dementia in my family - nothing else weirdly, no cancer, heart or lung issues and anything I can do to help research then I would

We have both been for this and found it really useful. All of the results are written out for you.

I would like to see everyone do it, as I think the data will be really useful for planning the future as well as analysing the results.

I've signed up to this and had my blood taken and height, weight and BP measured.

I was really surprised that despite eating well and being a healthy weight my cholesterol was higher than it should be.

@Nin93 my practice said they could scan the results and add them to my record.

I managed to bring my cholesterol down from 6.34 to 4.9 in the 3 weeks from the initial test to the GP appointment.

I also lost half a stone as I was more mindful of what I was eating. The nurse did say that my BMI is now on the low side.

They write your results on a pro-forma for you to take away (as well as inputting on their laptop). My cholesterol was 8.5. I think a lot depends on who does your test.

The chap doing mine gave off a vibe that he was very much questioning what life choices he had made to have ended up measuring a middle-aged woman's waist in a windowless room 😂

@Hurrylater that's really useful to know. I'm going to try with dietary changes in the first instance before asking to be retested. I've always had higher cholesterol, even in my 20's, when I was a skinny vegetarian it was 6.

I'd be happy with 6 now tho tbh.

This is really interesting. I also signed up and had my check up had very high cholesterol result from my bloods - despite being a heavy exerciser, healthy mostly veggie diet, never smoked, no family history etc and never had high cholesterol detected in the annual blood tests I have done as part of my workplace health assessment.

I found the set up a bit shonky tbh, but that could just be because mine was done in a pop up prefab in a supermarket car park set up.

I went for my Our Future Health assessment a few weeks ago. Came away with a proforma onto which the Clinician had added my test results. I then sent my results to my GP using the practice online query function. Got a text back eventually asking me to get a fasting blood test done at the practice to re-check cholesterol and to do 7 days of home blood pressure checks. Our Future Health do not automatically send the assessment results to your GP, you need to do this yourself if you want any follow up. My only reservation was that the blood tests at OFH are not fasting blood tests so harder to interpret. Overall I think it's well worthwhile joining up as a health MOT but it's up to you what to do with your results.

You might be interested in the Protect study then @bonfirebash . Well, and anybody else, of course.

It is to help research into Dementia, but great as you can sign up to do bits and bobs in your own time, at your own convenience. You don't need to go anywhere and you don't need to give bloods or anything. Some if it is completing questionnaires, a lot of it is doing brain training type games on your laptop.

Here is the link if anyone is interested. Protect Study