Week 1: Sir Muir Gray
Watch the first part of Sir Muir Gray’s keynote speech from last year’s stakeholder conference. Full of anecdotes and wisdom, the video covers his:
- experiences with setting up systems in cervical screening
- introduction of breast screening
- screening in childhood
- organisation of screening services
- prostate cancer risk management programme
My name is Muir Gray and I’m a consultant in public health. At the moment I’m working in Oxford University Hospitals Trust, working for a hospital, but I was formerly the first director of the National Screening Committee and at that time I was also the director of public health in the Oxford region. So that’s been my life, as a consultant in public health.
You may remember a newspaper called the News of the World that always had very racy stuff in it. I’ve been in the News of the World twice, the first time for screening. I won’t tell you about the second.
I was sitting at home one Saturday afternoon when the PR (public relations) chap at the regional health authority phoned through and said “Muir, you’re going to be phoned by every Sunday newspaper and I want you up at the car park at the Churchill Hospital.” A woman had died a couple years ago from cervical cancer and you're responsible for the programme.
I said “I’ve only been responsible for a month. But he said “you’re responsible for the programme so we better get up and get the interviews – the phone calls will be coming in”. And sure enough they came in.
So I went up to the Churchill Hospital and I said I better have a look at the lab. I hadn’t been to see it really. So I went to see it and I asked to see the records and this is a long time ago, of course, before computers were everywhere. They had a big drum with cards and inside they had lollipop sticks stuck for positives so they could see the positives. They said it worked fine for them and you know they’d been running it for about 50 years. But this woman had died because her records had been lost. That was it, that was the story, whether that was actually the case I don’t know and we will never know.
So - I did an interview but when I was doing the interview I was thinking “I could be back here next week, this could happen anywhere. There's no system here, there’s nothing, it's just a whole lot of activity”. So I decided I would do something about it and I was actually given the chance to walk away from it or be fired from it, you know get rid of Dr Gray and someone else was going to take this on but I felt my reputation was on the line so I said I'd like to do something.
I went to the Department of Health and told them about the problem and they said “well, we're preparing a circular on this and we'll show you the draft circular”. So they pushed this bit of paper across and I read half of it and then I pushed it back and they said “what you think?”. I said “well I counted 15 should’s and then I gave up” and they said “do you want musts?” I said “no, I want how to’s” and they said the Department of Health doesn't do “how to’s” so I said “well some of us will have to do how to”.
So we convened a meeting, a few friends and I, got a little grant from Nuffield and convened a meeting of women's organisations, researchers regional health authorities, the departments of health from Wales, Northern Ireland, Scotland, England. And we said “well, what are we going to do? What is the aim of the cervical screening programme or its objectives?” Don’t worry too much about computing and the invitation system but we have to decide first of all what are we trying to achieve? How can we make a system?
Now systems thinking I’d been interested in for a long time. There have been two main sources of systems thinking that influenced me. First was by a man called Ludwig von Bertalanffy. Two fs in Bertalanffy remember. And he was a biologist from Vienna in the 1930s, a member of the Vienna circle, very famous circle of scientists and philosophers and he also was a biologist who wrote and developed this concept of general system theory. And here's an example of a system - an ant colony. Ants, bees, these are complex organisations - they act as single entities even though there's hundreds or thousands of different individuals involved. So that was one source of thinking about systems.
The other source of inspiration was industry, in particular the industry of Germany and Japan and of those 2 much more was written about Japanese industry in particular about Toyota. Here is the classic book on Toyota called the “Toyota Production System” by Taiichi Ohno, who really drove their obsession with quality and their obsession with waste.
So I thought we should develop cervical screening as a system. What is the aim of the cervical screening programme? What are its objectives? What criteria would we use to measure progress towards those objectives? What standards would you have to let you know how well you were doing? Simple stuff, simple stuff. But it wasn't really being done before. So with a number of friends we set about it we just called it the NHS Cervical Screening Programme. We bought PageMaker, a type of desktop publishing software and I got some clever young people to do a newsletter. Edwina Curry, remember Edwina Curry? She was the minister, she signed “welcome to the NHS Cervical Screening Programme”. This wasn't done inside the Department of Health, I did it from Oxfordshire Area Health Authority. So it was an NHS initiative with academics involved.
Breast cancer screening
Then along came breast cancer screening. Now I wasn't involved in the decision to introduce breast cancer screening but they said to me well, would your team take this on? And breast cancer screening, of course, was in some ways easier to do. There was nothing happening at the moment and when I was asked once by the Health Committee in the House of Commons what’s the main difference between the breast and the cervical programmes, I said that the breast cancer screening programme was like knitting a cardigan, not that I’ve ever knitted a cardigan, but knitting a cardigan at terrific speed and of course we had to get 14, one for each region, 14 breast cancer screening programmes up and running within 10 months for the general election. Whereas the cervical screening I had to unravel the cardigan, write the pattern, knit it and carry on wearing it at the same time. That was the degree of complexity. We weren’t allowed to stop cervical screening for 3 months and rejig the computers and rejig the labs.
So breast cancer screening was in some ways relatively simple. We also had a separate budget and we had a remit to reduce the number of breast cancer assessment centres which were about 300 when we started and it seemed sensible to us to have just a hundred. So we had to go and see hospitals and say “well, the centre’s going to be there and not there or there”, which no one particularly enjoyed but the women said “yes, that’s the right thing to do” and then people said they'll have to travel further and women said "don’t worry about that, you tell us where quality is and we'll go to it". And then someone said but what about the bus fares? And then women said "don’t worry about that – that’s a matter of social equity. We’ll sort out the bus fare. Poor women shouldn’t be restricted by lack of bus fares”. So that was breast and cervix.
Antenatal and childhood screening
Then along came antenatal screening and we were asked to take responsibility for that. At about this time the National screening Committee was getting going and it was always chaired by one of the chief medical officers of the 4 home nations. So the national screening committee was the overarching body keeping an eye on all of this as it developed. And screening in pregnancy was quite a big issue because when we got involved it was all sorts of things happening. People had developed new ultrasound machines and therefore they’d found things called soft tissue markers and women were being called back and referred for amniocentesis. No-one had a clue what these soft tissue markers were, just that the new machines had come in.
Of course pregnancy’s a healthy time, that made it more difficult and a woman said to me “listen, every time I go to an antenatal clinic then they tell me about some handicap or disease I’ve never heard about and it's spoiling it”. So it’s very delicate to balance it.
Screening in childhood, we inherited a mess of every different school health service doing things like screening for flat feet… but there were some things like screening for deafness in the neonate that we knew from randomized controlled trials was really effective.
Research and screening
Then we became the bridge between research and action. So as the research started coming out about abdominal aortic aneurysm or about colorectal cancer then the question is how do we put it into practice? And this has got many lessons for us today because you have to think about the benefits you find in a research study, sometimes called the efficacy of a particular intervention, may be different from the effectiveness - how will it work in Coketown, you know that old Dickens Coketown, how would it work in Coketown on a wet Thursday afternoon, week after week after week?
You see in colorectal cancer, for example, the chap who did all the research has spent his whole professional career studying colorectal cancer screening. He had a team, he had MRC (Medical Research Council) funding. So simply taking what he'd done and expecting it to be done everywhere in England was unrealistic so we ran pilots, we started to get people where we could try it out. And of course the people who volunteer to become pilots, they were above the mean in terms of competence and keenness but at least you are moving away from the excellence of the research that had shown the efficacy to think about effectiveness and cost-effectiveness in the ordinary service setting. Because a week after week we have to think about this.
And there was an interesting issue came up of course that someone asked us, “well where is screening difficult?” and I said “it’s difficult in years 1, 2 and 3 when you're getting started and it's also difficult in years 8, 9 and 10 when you’re getting bored”. You know, screening's a pretty boring thing so what we had to do was to build research into screening and also to have standards so people will see how were they getting on in comparison with standards. We expected everyone, just like Toyota, to get better every year against the standards and then we reset the standards. As someone said you are moving the goalposts every year and I said “yes we are”. That's one of the principles of Japanese quality assurance – if standards aren't being reset every year it is proof they're not being used.
Prostate cancer risk management programme
So what we’re seeing then was a major approach to the organisation of services. New programmes came in, I mentioned colorectal, abdominal aortic aneurysm and probably the most difficult thing we dealt with was prostate cancer screening. There was a very strong move to introduce prostate cancer screening and the basis of this was the fact that people who had screening lived longer but of course – and this is something I had to explain on radio without the ability to move my hands – that this is lead-time bias. So if you survive 3 years with cancer and if we introduce a test that finds it 3 years earlier it looks as though you're surviving 6 years but all you're doing is living 3 years longer knowing you've got prostate cancer.
It’s called lead-time bias. But we had to deal with the newspapers about that and with men’s groups who felt very strongly that it wasn't right for women to be getting breast cancer screening, cervical screening and men not to get prostate cancer screening. Some of the arguments were very good. One men's organisation said “well the randomised trials you're doing are just not big enough to produce the evidence” but my job and our job at the National Steering Committee was to advise ministers. Now in a democracy values trump evidence, so the secretary of state is entitled to say “look, men say you experts are just fiddling about with research and it is their right to know their PSA (prostate-specific anitigen) and they would be less anxious if they knew it so we're going to introduce prostate cancer screening”. That’s the right of the politician to do that. As an official, you have to respect that right and I would have resigned as it happens. I didn’t have to resign but you have to be clear in public health what a resignation issue is.
So we did eventually introduce something called the prostate cancer risk management programme and that allowed men to have PSA test but only if they had taking a decision support program on the internet to really, really understand what the downside is and now I’m pleased to say this year a huge randomised trial’s been published – a 10-year followup in the New England Journal of Medicine – showing that people who have localised prostate cancer that's detected by screening don’t live any longer if they have surgery or radiotherapy than if they have watchful waiting and they certainly have a lot less side effects.
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