Oral evidence: National Health Screening, HC 244Wednesday 25 June 2014

Oral evidence, 25 June 2014.

Witnesses

Dr Anne Mackie, Director of Programmes, UK National Screening Committee, Dr Kevin Dunbar, Director, National Chlamydia Screening Programme, Jamie Waterall, NHS Health Check National Lead, Public Health England, and Dr Sharon Hillier, Deputy Director of Screening Division, Public Health Wales, gave evidence.

Chair

Good morning. I welcome you to the session this morning. It would be helpful if you started off by introducing yourselves.

Dr Mackie

My name is Dr Anne Mackie. I am the director of the UK National Screening Committee.

Dr Dunbar

I am Dr Kevin Dunbar. I am the director of the National Chlamydia Screening Programme.

Dr Hillier

I am Dr Sharon Hillier. I am deputy director of Screening Division, Public Health Wales.

Jamie Waterall

Good morning. I am Jamie Waterall. I am the national lead for the NHS Health Check programme at Public Health England.

Chair

May I start by asking you, Dr Mackie, to clarify whether the members of the UK National Screening Programme are independent or are employed by Public Health England?

Dr Mackie

The members are independent of Public Health England. Shall I expand on that?

Chair

Yes, please.

Dr Mackie

Public Health England hosts me and my team, and the purpose of my team is to bring together the best international evidence and expert opinion, following consultation and a synthesis of the peer review literature, to the committee and to present it. The committee is the one that makes a recommendation to the four UK Governments. The committee is chaired by a CMO on behalf of the other three; in this instance it is David Walker, who is deputy to Sally Davies, the English CMO. The remainder of the members are experts, lay people, consumer representation, user reps, health economists, ethicists and researchers.

Chair

It is not on the Government Office for Science list of science advisory committees. Is there a reason for that?

Dr Mackie

I do not know about the list, but we looked at this not long ago when talking about the NHS constitution. The advice was that we were a standing ministerial advisory committee in terms of governance.

Chair

Let me go a little further. There is a code of practice that the Government Office for Science has adopted for scientific advisory committees. Do you work within that code of practice?

Dr Mackie

We work within the code of practice relating to public bodies, for consultation, the getting of expert witnesses—

Chair

But not within the GO-Science code of practice.

Dr Mackie

I do not know that, no.

Chair

There is no logical explanation for that.

Dr Mackie

I would have to come back to you. I would need to talk to the Department to understand which code of practice we work within.

Chair

Okay. Can we move straight on to Stephen Metcalfe?

Stephen Metcalfe

I want to examine the evidence base on which decisions are made. You spoke in a previous answer about taking evidence from the UK and abroad. How do you check that the quality of the evidence that you take from abroad is the same as the quality of evidence that you might use in the UK.

Dr Mackie

The evidence that we use is brought together by a variety of external organisations. Some of that is done in a systematic reviewing way, and some in a literature synthesis way. The reviewers are expert at saying what the quality of the evidence is. We therefore only bring together good quality, peer-reviewed evidence. However, in quite a lot of the cases where we are asked to consider screening programmes, people say that Italy do it, or the Americans do it, or “They do it in the south of France. Why aren’t we doing it here?” We have therefore tried to find out as much as we can about that. It is often grey literature, by which I mean that it is not published. We would take that into account.

Stephen Metcalfe

Did you say grey literature?

Dr Mackie

Yes; that is the word for not peer-reviewed literature.

Stephen Metcalfe

Where it is grey, how do you decide? Do you then conduct your own inquiries? You gave an example of another country using it, but based on grey evidence. How would you decide whether there was any value in what it was doing?

Dr Mackie

We try to look only at the peer-reviewed literature, so the literature synthesis brings together what is done. If the Americans have done some work on group B strep screening, for instance, we would look at that. We would have wished that to be in the peer-reviewed literature, and we would only take that into account when we came to a conclusion about what is the evidence base for making a recommendation to Ministers. The Minister, or the public, will often want to know why they do it in America and not here, or why they do it in Italy and not here. Quite often, the answer will be that they do not, or it is not like that here, but where the evidence is published—say, the Italians have published some information on sudden cardiac death—the peer reviewers here have said, “Well, we don’t think that is of very high quality,” and have gone through why that is the case. Quite often in the case of the American examples, the arrangements are so different from those that pertain here that it is difficult for us to say, “Let’s move that lock, stock and barrel.”

Stephen Metcalfe

Where another country is conducting a programme that we do not, even if you don’t think very much of the evidence that has been published on sudden cardiac death in Italy, would that be enough to get you to conduct your own inquiry and seek evidence here in the UK? It must cost them money, so there must be a reason why they are doing it, even if the evidence is relatively poor by our standards. Would that instigate a possible inquiry into a programme?

Dr Mackie

We would look to ask why they were doing it and to understand, but very often the answers are cultural rather than scientific.

Stephen Metcalfe

Thank you. If I can, I would like to move on to the NHS Health Check programme, which I believe was implemented without conclusive evidence of its effectiveness. Is that a fair charge?

Jamie Waterall

When the policy was introduced, strong economic modelling was undertaken by the Department of Health to look at the impact. However, it is fair to say that, with regard to the evidence of the impact of the programme that is being introduced and rolled out currently, we do not currently have it for the entirety of the programme. It is important, first, to recognise, if we look at the evidence in terms of what we are trying to achieve, that there is strong evidence that we know behavioural and physiological risk factors are leading to people dying prematurely, and developing long-term conditions. The global burden of disease study, which was published last year, makes a strong case that the concept of risk factors—smoking, obesity, lack of physical activity, alcohol, cholesterol or blood pressure—are common causes of long-term conditions and mortality. We know that there is strong evidence that we have to do something. In terms of how we manage those individual risk factors, there is strong evidence of individual management of the risk factors, and we have clear NICE guidance for those. For example, there is clear evidence in the NICE recommendation that people should have their blood pressure checked every five years, and then how those individuals should be managed, along with advice and guidance from NICE on physical activity, smoking and the variety of risk factors that we have in the health check programme. There is strong evidence that there is a problem. There is strong evidence for the individual risk factors, and how they are managed. Where the debate comes, and where there is controversy, is over the totality of the evidence. If you put these into a total programme, and try to manage them at the population level, what is the impact? Public Health England published a report back in July last year, which we included in our written evidence. It was called “Our approach to the evidence.” In it, we set out firmly and clearly that we feel there is need for action, and that we must be addressing these risk factors. We know that there is strong evidence for individual risk factor management, but what we need to glean and gain is better evidence around treating them as a collective. We have done a few things. One is that we have established an expert clinical and scientific advisory panel to the programme, which has both external and internal academics and clinicians. They are now overseeing the content of the programme and also ensuring that we get that focus on research and evaluation of the programme across England. We made a commitment recently that we will publish a research and evaluation strategy for the programme, and we held a symposium only a month ago where we brought 100 academics and a variety of colleagues together. By the autumn, we will be publishing a document to focus on how we can bring stronger scientific rigour and evidence to the programme. It is also important to note that two national evaluations are currently under way commissioned by the Department of Health. Some of the early findings that we are getting from the English programme are reassuring. Stoke-on-Trent colleagues published results on their programme recently. It showed a significant impact on reduction of cardiovascular risk on the individuals that they were interacting with, and some publications came out of Queen Mary University, which had been doing an evaluation. One of the criticisms has been that the uptake will only be high in the affluent communities—the “worried well.” Again, the evidence coming from Queen Mary University is that there is equitable uptake in the deprived communities, and high uptake in the BME communities. However, it is important that we continue to monitor the outcomes and get a greater sense of what the programme is achieving.

Graham Stringer

The independent review of the National Screening Committee says that you bring your judgment to bear on policy recommendations. If you just bring your judgment to bear, how do you stop it being subjective and leading to inconsistencies?

Dr Mackie

We start with a review of the peer-reviewed literature, as I said, and we put it out to consultation. Each time we do a piece of work, we put it out to consultation. Sometimes we do it directly with stakeholders; we might work with the national clinical director for cardiovascular disease, for instance, or the dementia tsar, as he was known, to make sure that what we write is sensible, and we then put that out for three months’ consultation. Often, we have a lot of correspondence and responses to those consultations. We then bring that lot back together and come to a decision, and we try hard to make sure that those decisions are consistent. If you look at the criteria that we use, some of those are about acceptability to the public and to professionals, and, in the end, the committee needs to bring judgment to bear in order to decide whether to implement these screening programmes.

Graham Stringer

I suppose this is asking a similar question in a different way. The independent review also says that you do not rigidly score and combine the criteria. If you are not using a scoring process, what is the purpose? Again, you are back to subjective assessments, are you not?

Dr Mackie

Inevitably, some bits of it will be so, and that is why we need to involve as many people as possible. So the recent decision on screening women under 25 had several hundred responses. But the core of the evidence relates to whether we are likely to do more good than harm at reasonable cost, and the majority of that can be done by the synthesis of the peer-review literature.

Graham Stringer

In 1998, in your committee’s first annual report, there was a recommended format for systematic reviews that outlined the evidential requirements. Is it the case that that guidance is no longer available? If that is the case, why is it no longer available?

Dr Mackie

Well, 1998 is an awfully long time ago, and things move on. We have done quite a bit of work in relation to the current NSC review, but ever since I started, in around 2006, we have been looking at how we can best bring evidence together to help guide the service. Over that period, there has been international consensus on systematic reviewing, on evidence synthesis, on rapid reviewing and on updating. The Americans and Canadians, for instance, have a lot of experience in doing this, so these things move on. NICE has been invented, too, and it does a lot of reviewing of evidence in literature. We should not stand still but should use best current practice to review and synthesise knowledge.

Graham Stringer

I am sure that that is the case. It is a long time—16 years ago—but there was a case then for making publicly available a format for systematic review. You can improve on that and get better at it. Why have you not just improved that process and made publicly available what the new system of scoring is?

Dr Mackie

You are right that we do not score. Therefore, we would not be publishing a report about scoring. We have a methods process in development, and we describe fairly carefully how we go about our process, about deciding to do a review and identifying stakeholders, and we do some scoping about the question. We then take a view on in how much detail we need to do the piece of work. Those things are clear and open to public inspection. A review was done recently by Warwick University, comparing how the UK NSC goes about its business, in terms of gathering evidence and making recommendations. We bear favourable comparison with the other groups that do it, with other countries looking to us regularly for the evidence reviews that we use, and quoting them in the literature, as well as coming to us to ask about how we go about delivering or setting standards for individual programmes. We have good reason to think that we are doing it well, but we also need to keep going and make sure that we continue to improve how we do it.

Jim Dowd

I want to look at measuring outcomes. Obviously, the purpose of screening programmes is to benefit somebody identifiable at some stage. What processes are in place to capture the published data on whether a programme is reducing morbidity and mortality?

Dr Mackie

They vary hugely across the screening programmes. The cancer screening programmes have got very good ways of doing that. They publish details about the processes within the programmes; how many people are invited, and what proportion of the people invited come; how accurate the tests are; how many people screen positive, and how many have a disease; and then how many people are treated. They publish regularly on the outcomes of those. Some of the non-cancer screening programmes are newer, and the monitoring is much more difficult and new, but we are able to say with some confidence that we find a thousand or so babies with metabolic conditions and other conditions on the blood spot. The evidence suggests that we are saving lives, and brains and limbs, doing that. We know through work with the Institute of Child Health that we have the lowest rate of maternal to HIV transmission in the world, and we published on that recently. We do our very best to make sure that we publish regularly. We produce an annual report on how the screening programmes are delivering, and that contains as much outcome data as we can possibly lay our hands on.

Jim Dowd

Have you ever come across a programme that clearly was not performing?

Dr Mackie

Yes, actually. We are currently—

Jim Dowd

What action did you suggest in the light of it?

Dr Mackie

It was slightly before my time, but the screening of young children for dental disease was looked at, and the evidence seemed to suggest that the money would be better spent helping children from deprived and poorer backgrounds to use fluoride toothpaste and to brush their teeth better. The decision to stop the whole systematic population screening programme was made, and the resources should have been put into primary dental prevention. We are currently talking about screening pregnant women for rubella susceptibility—German measles susceptibility. It seems that it is probably the worst time to be finding out that someone is susceptible to German measles, since you cannot do anything about it then. We are therefore in conversation with our PHE colleagues in the vaccine department to see whether, between us, we can organise to bolster the prevention of German measles by MMR before women become pregnant, so that we do not continue to do it in pregnancy, which does not seem to be a particularly effective way of going about it.

Jim Dowd

In order to save one life with breast cancer screening, we have seen evidence that the number that you have to test varies by a factor of two and a half. I have seen a figure as low as 84 and a figure as high as 200. How do you deal with such uncertainty, such anomalies, and how do you explain that to the wider population?

Dr Mackie

How we deal with it is that we do our very best to try and get an answer, but, inevitably, with the technology that we have, we all think that it is benign. The development of ultrasound and MMR are all good, but they find lots more things than they originally did, so the advent of smaller breast cancers and ductile carcinoma in situ has happened, and we are less clear about how that develops. Because we cannot do a randomised control trial and say, “Let’s leave these women and see what happens, and let’s treat these,” we have to make assumptions. Therefore, we need to make assumptions about how many women we are helping and harming. There is lots of discussion in the literature about how you go about doing that for the best, but inevitably you end up with one end of the world saying, “We get this much benefit,” and another saying, “We get that much benefit.” We need to be open about that and say, “Our best estimate is 1,300 lives that we save,” and we try very hard to make the best brains help us in coming to those conclusions, but we have to be honest and say that it might be a bit more or a bit less. We need to make sure that we let the public know that, so we try hard to take any opportunity to put a message out about screening. We try to grab that opportunity so that people can see it is not completely accurate.

Jim Dowd

The main reason for that uncertainty is in fact the absence of the randomised control trial, because you cannot deny people treatment simply to benefit your evidence.

Dr Mackie

Exactly. We do not understand fully how DCIS develops, and we therefore cannot say reliably to that lady, “You’re okay; let it be,” and to another lady, “You really need it treating.” Prostate cancer is very similar.

Jim Dowd

I turn to you, Dr Dunbar. I was astonished when I read the briefing papers at the number of Chlamydia tests that are carried out every year. My initial instinct on seeing such a huge database was that you must be able to make some fairly accurate and precise assertions, but your website says: “Opportunistic screening” for Chlamydia “will probably have resulted in reductions in prevalence…” How come you don’t know for sure?

Dr Dunbar

First, it is hard to measure prevalence. Prevalence is a specific epidemiological term; it means the number of people currently infected, and we can only know that when we test them. To determine the total population prevalence, we would have to test everybody in our target age group. As you can imagine, it is hard to test large groups that would give us a sufficient sample. When we do attempt to gather survey data on prevalence, we find that only a small number of people apply, so we have been unable to make that kind of monitoring programme work. We are in the process of evaluating and validating seroepidemiological studies. Seroepidemiology is evaluating markers in the blood of prior infection, and we hope to use this to review serology samples from patients who have not come forward for any particular reason, to find out what the prevalence of Chlamydia antibodies is within the population.

Jim Dowd

You say that you test only a proportion of your target group, but your target group is not everybody who is sexually active; it is those who indulge in risky behaviour, is it not?

Dr Dunbar

No; it is all sexually active people between the ages of 15 and 24.

Jim Dowd

It is the total population.

Dr Dunbar

The total sexually active population, but you can find that quite a lot of people will not have started having sex until later in their teens and even early 20s.

Dr Mackie

May I answer your first question about the code of practice?

Chair

We have been looking it up as well.

Dr Mackie

Shall I see if you say what we say? It is not classed as a scientific advisory committee or a public body, so it is not statutory and not subject to the recent Cabinet Office review of scientific committees and public bodies. It is not required to comply with the code of practice for scientific advisory committees, but there is an agreement between the four countries that sets out a set of process and procedural rules and governance. As part of the UK NSC, a code of practice is being developed that draws on CoPSAC.

Chair

Presumably, when you say “draws on,” it will be tested by asking the opinion of the Government chief scientist or the chief medical officer on whether it fits.

Dr Mackie

Absolutely. The review has been stimulated to some extent by David Walker’s arrival as the new chair, taking over from Harry, and he has said that we are slightly overdue our three-yearly update of how we go about our business and whether we are doing it properly. The recommendations will clearly go to all four Governments to make sure that they are happy.

Graham Stringer

I go back to Dr Dunbar, and his inability to get the prevalence of Chlamydia in the population. I realise that there may be a complicated statistical answer, but why can’t you just sample an adjusted population to get the prevalence?

Dr Dunbar

You are exactly right. There is a complicated statistical answer to that.

Graham Stringer

Will you tell us?

Dr Dunbar

Essentially, in order to sample a sufficient amount of the population to get down to the confidence intervals required to give you the accuracy to measure the change that we are looking for, you have to sample phenomenally large numbers of people, and they have to respond in an unbiased way. For example, if you send invites to people in the mail, and ask whether they would like to submit a sample for a national survey, for anything, there is always a degree of bias in the response. If you were asked about heart disease in a survey and you had had heart disease, you might be more inclined to respond because you have had personal experience and it is something that is of interest to you, and if you had not you might not be. Getting those sampling surveys is challenging. We have attempted to do them, but we have simply not been able to get people to respond in the numbers that are required to give us the accuracy to measure the differences in prevalence that we would like to see.

Stephen Mosley

I want to ask about the difference in screening programmes between the four nations within the UK. I shall start with Dr Hillier. We have some evidence from the Save Babies Through Screening Foundation, and Children Living with Inherited Metabolic Diseases—CLIMB. They have noted how the test for MCADD was introduced in England in 2009 but it was not introduced in Wales until 2012. We have also seen evidence on cervical cancer screening that, in England, the changes were made in 2003-04, but they were not updated in Wales until 2012. Why was Wales behind the curve?

Dr Hillier

In terms of process and the decision making policy in Wales, that is made by the Welsh Government. The Welsh Government established a Wales screening committee to advise the Minister for Health and Social Care. There is a good process in that the committee receives recommendations from the UK NSC, and two members from Wales sit on the UK NSC. The director of the screening division, Dr Rosemary Fox, and Dr Heather Payne, from the Welsh Government, have seats on the UK NSC. Wales has a good structure on the policy side. The Wales screening committee receives the recommendation, and it is looking at the programme as a whole. Generally, the issues about the screening programme are about the criteria of 19, where you have to establish a programme on that pathway. You have to ensure that you have adequate staff, and facilities for testing, diagnosis, treatment and programme management. Unless you have that in place, you are potentially going to cause more harm. That is probably the bit in Wales where we have had issues, in terms of MCADD. In terms of newborn bloodspot screening in Wales, this was not a nationally managed programme; it was not managed under the governance of anyone in Wales. It happened, and it happened as well as it possibly could in Wales, but no one had the overall governance of it. The Welsh Government asked us to look at that, so we established a project, and there were three bits to that project. One was to establish a safe and sustainable newborn bloodspot screening programme. Another was to establish policies and standards, and to introduce the screening tests that were recommended by the UK NSC, of which one was for MCADD. The third one was to review Duchenne muscular dystrophy screening, because that has happened in Wales but it was not a UK NSC recommendation. That was started as a pilot 20 years ago, and it kind of happened. We established a project, and we brought that into a programme rather than a test. As part of that programme, we established MCADD screening; we implemented that in 2012. We had to have a governance structure in before we could implement that test. With the change in age range in cervical screening, that was a significant policy change for us, and that was something that we wanted the UK NSC to consider. Once it had considered it, it reviewed the evidence, undertook a public consultation and made a recommendation. That recommendation then went to our screening committee, and we implemented that change. That was in terms of policy being discussed at that level.

Stephen Mosley

Would Public Health Wales implement, amend or withdraw programmes at a moment, without it first having a recommendation from the national screening committee?

Dr Hillier

No.

Stephen Mosley

How does that work elsewhere? In England, the change to cervical cancer testing was nine years ahead of Wales; with MCADD, it was three or four years. Why is England so far ahead?

Dr Hillier

In terms of the other countries, I think we were the last to introduce MCADD in Wales in terms of the other countries. As I said, it was the practical bits of information given in that whole programme approach. I could not answer why England was ahead.

Dr Mackie

On governance relating to the cancer screening programme in England, I did not say at the beginning but I have two jobs. One is to help the NSC consider really high-quality evidence and make a judgment on it, but the other is to oversee the non-cancer screening programmes in England. The cancer screening programmes in England are overseen by a different set of structures, and they have got together some expert advisory committees that have been looking at and continue to look at how they can best improve the programmes. The English committee looked at changing the starting age of cervix screening to 25 quite a long time ago, based on evidence relating to the English population. The Welsh officers of the committee asked us if we, in the UK NSC, would look to see whether that was something that should be applied across the piece. We undertook that in 2011-12.

Stephen Mosley

There is no automatic trigger. If one of the nations changes its policy, there is no automatic trigger to UK NSC.

Dr Mackie

We have sorted that out. Now, any big change in one of the existing cancer screening programmes or in other programmes—the Sickle programme wants to change itself quite significantly, as does the Down’s programme—we would look to bring to the UK NSC. The cervix at 25 was an example of that. Flexi-sigmoidoscopy as part of the bowel screening programme was brought to the NSC, and that is a UK recommendation. Now, we are also looking regularly at updating existing cancer screening programmes.

Chair

Are there examples of screening programmes starting in one of the other three countries, ahead of England?

Dr Mackie

Not that I am aware of. People will set off doing screening for all sorts of good reasons, but I am not aware that there are whole-nation or even big screening programmes in the other UK countries that we do not do across the piece.

Stephen Metcalfe

I want to go back to an area that we covered with the previous panel, which was on the current research and the new technologies that are emerging, and how they are going to be adopted. How well equipped do you think the NSC is to adapt to changing technology, when it comes to including it in its future work programme?

Dr Mackie

Pretty well, I think. Each of our existing screening programmes—this is pretty much about existing screening programmes—has a large advisory committee. They are full of clinicians, often patients or people with relatives who have the conditions, and some public health people. They have a whole range of roles, but one in particular is horizon scanning. They will say, “What about non-invasive prenatal diagnosis for Down’s? Free foetal DNA from the baby circulates in the maternal circulation, and somebody has invented a clever machine to measure it. Can we get on and do that?” Either we do evaluative work within the NSC, funded and sponsored by the NSC, or we ask outfits like the health technology assessment agency or the MRC to undertake pieces of research for us. We have lots of good examples of that. The breast screening programme is currently running the largest randomised control trial in the world on whether we should screen women slightly younger and slightly older. We are sponsors and supporters of research work going on at University College London, looking at whether we should implement non-invasive tests for the Down’s programme, on the basis of changing newborn screening technology and the tandem mass spectrometer. We have said that we should implement these for new bloodspot tests.

Stephen Metcalfe

Where there are gaps in the evidence base, you are funding some of it yourself to see whether you can fill the gaps.

Dr Mackie

I do not have a research fund, but I have some evaluation money and I can get people to do the literature synthesis. If we need new primary research, that would need to be done by research bodies. For instance, there is a proposal in at the moment to see whether we should do a trial of screening for a severe combined immune deficiency—babies in bubbles—and that is currently with the MRC and the HTA.

Stephen Metcalfe

Specifically where genomic information offers the potential for changes to screening programmes, how are you adapting to that?

Dr Mackie

Non-invasive prenatal diagnosis is a perfect example. Clearly there are claims being made for this in the literature. The far east has adopted this in one way or another. It is being used in the private sector. Can we, as quickly as possible, work out whether, with good faith, we can offer that to all 750,000 pregnant women in the UK and say, “This is better than, or as good as, the thing that we currently offer”?

Stephen Metcalfe

What do you do in terms of evaluating the social and ethical impact that a programme like that might have?

Dr Mackie

We take that into account when we do the piece of work within the NSC, tucked away in things like whether it is acceptable and whether we do more harm than good; some of those issues are taken into account. In the case of things like pre-conception genetic carrier screening, something where it is completely new, we might go out to another organisation. In that particular case, we asked the Human Genetics Commission if it would have a look. Much as we might ask, “Would you do us a cost-economic model of prostate screening?”, we have people who are expert in that. We would do a specific piece of work—and we have done a specific piece of work.

Stephen Metcalfe

If your committee is accused of not being fit for purpose to adapt to the changes, you do not recognise that criticism.

Dr Mackie

I do not think that we are not fit for purpose.

Stephen Metcalfe

I meant in terms of the future.

Dr Mackie

We can always do these things better, and part of the current UK NSC consultation is to say explicitly, “Is there something new in the genomics world that would make us look at these things in a different and new way?”, and is there an argument for having an external body with ongoing experience of the special things about screening which means that we could put ethical, legal and social questions to them with some confidence that they would represent a range of views? That is actively being considered right now.

Stephen Mosley

There was some mention of cost-effectiveness in those last answers. I ask the panel what methods your organisations use to evaluate whether a screening programme offers value for money.

Dr Mackie

The UK NSC uses the Treasury Green Book process when it looks at cost-effectiveness. We try to examine the benefits to the individual, but also at costs and benefits wider than that. We often have to rely on information such as the QALY, or NHS cost, because that is what is in the peer-reviewed literature. If we commission a piece of work, and prostate cancer is a good example, we would ask them to do as broad a piece of work as possible.

Dr Hillier

In terms of the screening programmes, again the UK NSC by that process gives us information on the cost-effectiveness and implementation of screening programmes. Again, it is that balance of benefit versus harm at reasonable cost. In terms of Public Health Wales, we are configured a little differently from Public Health England, in that Public Health Wales governs and manages the screening programmes. For the cancer programmes it is to the point of diagnosis; that whole pathway is within our governance. In terms of benchmarking, we are looking to see what our delivery looks like compared with other countries, but that is a little difficult because it is not comparing the same issues. Again, we get a lot of attention, from both the Welsh Government and our board, to ensure that we are delivering the programmes as effectively as possible. We found recently that, because we govern and manage the whole screening programme, we have reconfigured it slightly so that we are actually managing it by dovetailing into each other’s programmes, and our admin staff provide functions for different programmes. On how we deliver value for money, we are quite comfortable.

Dr Dunbar

As Anne said, we use the NHS costs for cost-effective analysis by using QALYs, the standard for cost-effectiveness analysis. In terms of the actual value of programming, because the Chlamydia screening is delivered by local authorities, we provide guidance to local authorities to ensure that they are targeting their resources in the most efficient way possible. We are currently undertaking an evaluation of the costs and the cost-effectiveness of the programme as well, to review and update the data, as the last bit of work on that is several years out of date.

Jamie Waterall

Prior to the introduction of the health check programme, the Department of Health undertook an economic impact assessment. Based on the fact that it had not been done before—it was based on modelling—it concluded that the health check programme would be cost-effective, potentially saving £3.6 billion a year at full rollout. Again, using the QALY model, it demonstrated that the programme would be very cost-effective. Because of what Public Health England said, based on the fact that it was modelled data because it had not been done before, we are going to refresh that modelling now that we have results coming out from local programmes to re-evaluate the cost-effectiveness.

Stephen Mosley

NICE indicates that health intervention should cost less than about £20,000 to £30,000 per quality adjusted life year to be considered cost-effective. Should screening programmes be subject to the same threshold?

Dr Mackie

The really interesting thing about screening programmes is how long and complex they are. They start with an offer to the public and, therefore, they are part of public health programmes. They then move into the NHS, and you might say that they should be judged by NHS cost-effectiveness thresholds, such as those of NICE. There is then the piece in the middle; screening programmes are incredibly reliant on accurate tests, so NICE also has a set of diagnostic cost-effectiveness criteria. We are currently working with a DH piece of work on how we should go about doing a cost-effectiveness piece, but if we are suggesting a screening programme we need to be able to say that we think it is possible to be done at reasonable cost. The latest one, which is the bloodspot screening programme extension—a piece of work done by Sheffield health economics—showed that it would be cost saving. You do not get many of those.

Dr Hillier

The new model of bloodspot screening is a good example, in terms of the programme acting at day 5 and getting that sample. You are identifying cases of MCADD and congenital hypothyroidism, for which the treatment is thyroxin, so it is a very small cost in terms of the treatment, and you are saving that whole lifetime of morbidity for that child. Although they are relatively rare, the benefit for that child from the point of birth onwards is quite considerable.

Dr Dunbar

In short, yes, it should be bound by the cost-effectiveness returns, but the challenge is how to measure that over lifetimes of benefits.

Jamie Waterall

I agree. QALYs were looked at in terms of the health check programme, and they all worked out at about £3,000 per QALY, coming well under the NICE threshold.

Chair

Several of our witnesses have questioned the quality, accuracy and currency of some of the literature that is available advising people about screening. Where does the buck stop with the literature?

Dr Mackie

The buck stops with the national screening programmes, for non-cancer and cancer screening programmes. We need to be sure that we are giving people the right information. The way we go about that is that both the cancer and the non-cancer programmes use the advisory groups that I have talked about. There is a huge amount of engagement with lay experts—so users and patients are on those groups—and certainly in the case of the recent breast cancer leaflets, focus groups include people beyond those who are affected directly by breast cancer. We need to be on our toes and keep responding to comments, and make sure that the information is as good as it can be, recognising some of the uncertainties that we have discussed.

Chair

How do you do that? One of our witnesses said that she was not sure whether information leaflets were regularly evaluated to see that they were effective in enabling people to make an informed choice about participating in a screening programme. How do you evaluate the content of the leaflets, and with what kind of frequency?

Dr Mackie

At the moment, almost all of the leaflets are being updated in one way or another. “Screening tests for you and your baby” is just about to come out in its brand new colours. The breast screening programme leaflet has just come out. In the last six months or so, the aortic aneurism screening programme has issued a decision aid. We look to the responses online to some extent, but also to the advisory committees, to make sure that they are current.

Chair

Finally, in the context of information given to people in private settings, do you have any oversight of that? Is there any different practice in Wales, for example?

Dr Mackie

We certainly do not have oversight of that. There have been quite a lot of discussions about whether the information given is sufficiently balanced in the private sector.

Chair

Would you support there being a regulatory function governing that?

Dr Mackie

I do not know whether regulation is the right answer. It is morally right, if anybody is being offered a test or a product, that they understand the pros and cons, and we go to huge lengths within the screening programmes to do that, however difficult it is. The private sector, or anybody offering tests or screening programmes, should do the same, but how we effect that is a matter for others.

Chair

Is that consistent across the panel?

Dr Hillier

In terms of leaflet production in Wales, we produce our own leaflets on the screening programmes. The breast screening leaflet is changing soon in line with work being done in England on informed choice, so we are consistent with that. In terms of information in the leaflet, we have a virtual reading panel. Our screen engagement team has established a reading panel, which is very diverse. We use that to feed it all the information that goes to the public, to get some feedback.

Chair

Do you engage with the private sector at all?

Dr Hillier

No, not in the private sector. We do not have any links in—certainly not on their information.

Chair

There seem to be missing bits right across the piece.

Dr Hillier

Yes.

Chair

Thank you very much for your time this morning. It has been very helpful. Oral evidence: National Health Screening, HC 244 29