Surprising letters from the NHS

[trophywench]

Two this week.

First was from the retinopathy service. After consistently receiving 'background changes/background retinopathy' since they started taking photos whenever that was - apparently I now have no detectable changes attributable to diabetes. That was a surprise considering the first time anyone noticed I had a tiny blood clot at the back of my left eye well away from my sight, was my optician in the early/middle 1990s, before retinal screening and all photos I've ever actually seen since then, have still showed it. I always wondered at the time whether it was a leave over from being socked in the face randomly by something or another as a kid - who knows.

Then yesterday - an invitation to take part in a clinical trial - the Galleri trial. 4 of us in my family - 3 died of or with, cancer. One left, me, who hasn't succumbed to it, so far. No idea whether that has led to this invitation or not - although I did enquire of the same GP surgery about 20 years ago whether I should have DNA tests - they enquired on my behalf and apparently not. So - it's interesting anyway. Blood test duly booked in about a fortnight - but not expecting to hear anything cos of course you wouldn't know if they've even tested you cos you're just as likely to be in the control group as not, or even if they do test, if they find nowt that needs attention, you still wouldn't hear.

 

[Proud to be erratic]

Two this week.

First was from the retinopathy service. After consistently receiving 'background changes/background retinopathy' since they started taking photos whenever that was - apparently I now have no detectable changes attributable to diabetes. That was a surprise considering the first time anyone noticed I had a tiny blood clot at the back of my left eye well away from my sight, was my optician in the early/middle 1990s, before retinal screening and all photos I've ever actually seen since then, have still showed it. I always wondered at the time whether it was a leave over from being socked in the face randomly by something or another as a kid - who knows.

Then yesterday - an invitation to take part in a clinical trial - the Galleri trial. 4 of us in my family - 3 died of or with, cancer. One left, me, who hasn't succumbed to it, so far. No idea whether that has led to this invitation or not - although I did enquire of the same GP surgery about 20 years ago whether I should have DNA tests - they enquired on my behalf and apparently not. So - it's interesting anyway. Blood test duly booked in about a fortnight - but not expecting to hear anything cos of course you wouldn't know if they've even tested you cos you're just as likely to be in the control group as not, or even if they do test, if they find nowt that needs attention, you still wouldn't hear.

Interesting, seems to be a big trial with potentially many participants across many Trusts. This 'big' component would normally throw up all sorts of difficulties: Trusts being 'precious' about sharing their information; accruing costs and scarce resources; what will a Trust get out of this? Plus a number of other obstacles.

Until Covid, trials were generally using small populations, frequently funded by commercial organisations (usually pharmaceutical companies, who had no intention of sharing anything with competitors) and would disappear without trace if the results weren't commercially beneficial.

I attended a talk, mid lockdown, at the Royal Institute of Anaethetists, where an NHS Dr presented an insight paper on how Covid had allowed his team to gain traction for conducting a truly national trial, across all UK Trusts into Covid treatments. Covid had allowed a door to be opened; the trial needed a (relatively) huge number of participants; the specific data could be obtained at extremely small cost from using existing data such as certain info from blood tests; and shared at extremely little inconvenience to Trusts by best use of IT and well thought through computer generated interrogation. So least interruption or burden on busy Trusts. Most significantly done by the NHS for the NHS without commercial (pharmaceutical) involvement. His talk included a reference to the Oxford team who made the Covid vaccination breakthrough, pointing out there was a terrific capability within UK's medical boffins, working for scientific research at large yet able to give back to UK without commercial competitive handcuffs.

Perhaps the Galleri Trial is an example of this.

 

[AndBreathe]

Two this week.

First was from the retinopathy service. After consistently receiving 'background changes/background retinopathy' since they started taking photos whenever that was - apparently I now have no detectable changes attributable to diabetes. That was a surprise considering the first time anyone noticed I had a tiny blood clot at the back of my left eye well away from my sight, was my optician in the early/middle 1990s, before retinal screening and all photos I've ever actually seen since then, have still showed it. I always wondered at the time whether it was a leave over from being socked in the face randomly by something or another as a kid - who knows.

Then yesterday - an invitation to take part in a clinical trial - the Galleri trial. 4 of us in my family - 3 died of or with, cancer. One left, me, who hasn't succumbed to it, so far. No idea whether that has led to this invitation or not - although I did enquire of the same GP surgery about 20 years ago whether I should have DNA tests - they enquired on my behalf and apparently not. So - it's interesting anyway. Blood test duly booked in about a fortnight - but not expecting to hear anything cos of course you wouldn't know if they've even tested you cos you're just as likely to be in the control group as not, or even if they do test, if they find nowt that needs attention, you still wouldn't hear.

Your blood would almost certainly be tested, even if you are in the control group. Any anomalies would be noted by the trials team.

If you are generally interested in being part of big data, it could be worthwhile adding your couple of ccs (of blood) to the UK BioBank.

 

[trophywench]

Your blood would almost certainly be tested, even if you are in the control group. Any anomalies would be noted by the trials team.

Info leaflet says 'sample will be kept and may be tested in the future' - so who knows at this stage - indeed if anyone ever finds out later! They're testing the test, not actually the participants IYSWIM.

 

[Deleted member 21371]

Your blood would almost certainly be tested, even if you are in the control group. Any anomalies would be noted by the trials team.

If you are generally interested in being part of big data, it could be worthwhile adding your couple of ccs (of blood) to the UK BioBank.

This explains it.

Who received a Galleri® test

Find out more about who will a get a Galleri® test and which results will be shared in the NHS-Galleri trial

www.nhs-galleri.org

 

[AndBreathe]

Info leaflet says 'sample will be kept and may be tested in the future' - so who knows at this stage - indeed if anyone ever finds out later! They're testing the test, not actually the participants IYSWIM.

This explains it.

Who received a Galleri® test

Find out more about who will a get a Galleri® test and which results will be shared in the NHS-Galleri trial

www.nhs-galleri.org

Thank you both.

I'm surprised the control population are not having their bloods examined. I would have thought it could better inform, generally.

Hey ho. Every day's a school day.

 

[Deleted member 21371]

Thank you both.

I'm surprised the control population are not having their bloods examined. I would have thought it could better inform, generally.

Hey ho. Every day's a school day.

It's testing the test.
If the control group modify their behaviour, it changes the results.
It the test group get false positives, or false negatives,there would be nothing to compare to.

 

[AndBreathe]

It's testing the test.
If the control group modify their behaviour, it changes the results.
It the test group get false positives, or false negatives,there would be nothing to compare to.

The control group, not receiving any results would not have anything on which to modify anything.

I am part of the biobank and other research databases, having given additional blood when I took part in a research study about a year ago. I have zero expectation of any feedback from the blood, but if it can contribute to improving lives in the future, that's fine by me.

 

[Deleted member 21371]

The control group, not receiving any results would not have anything on which to modify anything.

I am part of the biobank and other research databases, having given additional blood when I took part in a research study about a year ago. I have zero expectation of any feedback from the blood, but if it can contribute to improving lives in the future, that's fine by me.

Exactly.
You've got it.

 

[trophywench]

Presumably someone asks you if a whatever sample of yours can be added - I've never so far ever been asked - we'll see if I'm asked this time.

 

[AndBreathe]

Presumably someone asks you if a whatever sample of yours can be added - I've never so far ever been asked - we'll see if I'm asked this time.

Yes, it's a full, separate consent process.

I don't necessarily think all hospitals/research units are part of the biobank and one part of our trust is "in" and the other not. Most odd.

Frankly, research carried out in the past has helped me survive thus far. I feel strongly about doing "my bit", passively or otherwise for the future.

 

[trophywench]

No Type 1s would be alive had it not been for a tiddly bit of research done a century ago and I'm all in favour of giving back - just never been asked to do it. There doesn't seem to be any way of simply volunteering. Odd really considering it's a teaching hospital here in Coventry, ie Warwick Uni Med School.

 

[IrvineHimself]

There doesn't seem to be any way of simply volunteering.

As it is, in order to correct for bias, statisticians have to make assumptions about the group who were randomly invited but declined to take part, If you could just volunteer, without being randomly chosen, it would bias the sample to the point it would no longer be random. This would make any results worthless.

 

[trophywench]

As it is, in order to correct for bias, statisticians have to make assumptions about the group who were randomly invited but declined to take part, If you could just volunteer, without being randomly chosen, it would bias the sample to the point it would no longer be random. This would make any results worthless.

Sounds bats, that - but certainly makes sense.

 

[IrvineHimself]

Sounds bats, that - but certainly makes sense.

If you think that's bats, how about this. After the carnage of the 1st world war, during the 2nd world war the military invited the scientist to come up with ways of making rational decisions. This lead to the birth of operational research. One of the first things the boffins told the military was to get rid of all the guns in their heavy bombers, [except the tail gun]. Of course, the RAF went nuts, and ridiculed the boffins suggestion.

The truth of the matter was that:

1. Statistically, despite claims by non-tail gunners to the contrary, you can prove that the only gun ever to hit anything was the tail gun.
2. With all the guns, (nose, belly, roof, 2 side guns and tail gun = 6 + the gunners), the bombers flew about 50 or so metres lower and 4 or 5 kph slower than the German night fighters.
3. If they got rid of everything but the tail gun, the bombers could fly about 50 or so metres higher and about 4 or 5 kph faster than the German night fighter.

It took them well into the 1950s to convince the RAF and USAF that all those guns just made it easier for the fighters to shoot down the bombers. Since the late fifties though, heavy bombers only have a tail gun or back firing missiles.

Rational decision making based on things like operational research or its successors, is a really powerful tool. Unfortunately, it is often opaque and counter intuitive to those without an appropriate background. With the advent of AI, where how the AI arrived at a decision is opaque even to those who programmed it, the situation is even worse.

 

[trophywench]

Had my first sample taken on Monday last week - and to my surprise they used a butterfly to do it - never ever in 50 years has anyone before used one on me. And I had a bruise (which I also never have) so I have to say I'm not in favour!

 

[grovesy]

I had my bloods done this morning and realised my GP have been doing this for a while it is part a container blood draw system.
As an aside I got asked asked for the first time do I take B12, and also had feet tickling, sonically had pluses checked, and the inspection of skin on feet and between toes.