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NHS Satisfaction Survey; NHS & cancer; Headphones volume; P4 Medicine

Diagnosing Cancer - why does the UK still lag behind much of Europe and what is being done about it? The American dream - personalised medicine based on your genes. Plus do headphones damage hearing?

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28 minutes

Programme Transcript - Inside Health

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THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE ³ÉÈË¿ìÊÖ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

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INSIDE HEALTH

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Programme 5.

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TX:Ìý 03.02.15Ìý 2100-2130

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PRESENTER:Ìý MARK PORTER

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PRODUCER:Ìý ERIKA WRIGHT

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Porter

Hello. Coming up in today’s programme:Ìý The future of preventive healthcare and a leading American biologist who believes knowing your genetic make-up is the key to a long and happy life.

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The NHS and cancer. NICE has proposed lowering the threshold for urgent referrals for people with the disease but will that help reduce delays in diagnosis that are often cited as the reason why the UK survival rates lag behind much of Europe?

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And here’s an all too familiar sound:

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Headphone Leakage

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Annoying? Yes. ÌýBut potentially harmful too. ÌýWe examine the science behind French plans to introduce a legal limit on headphone volume amid concerns that a growing number of young people are unwittingly damaging their hearing.

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But first, the NHS and results of the latest survey showing satisfaction with the service remains close to an all-time high, despite the pasting it has had in the media recently. When I entered general practice in the early ‘90s around a third of those surveyed were very or quite satisfied with the service provided by the NHS, today that proportion has nigh on doubled to just under two thirds, albeit down from a peak in 2010.

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Inside Health’s Dr Margaret McCartney is in our Glasgow studio. Margaret, where do these results come from?

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McCartney

The most recent ones, that we’ve heard in the press, are from the British Social Attitudes Survey, this of 2014.Ìý And this is an annual event that’s been going on since 1983 where around 3,000 people in autumn, with addresses selected at random across England, Scotland and Wales, are asked if they would do an hour long interview with a researcher and it’s these results that we’re getting from 2014 which are being reported now.

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Porter

Because you could be forgiven for thinking that these were surveys that were done in hospitals or GPs’ surgeries actually on people who’d been using the NHS, so what you’re saying is many of these people might not have had any contact with the service?

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McCartney

Well actually there’s a really interesting part of the survey when they ask people just that and they asked people who’d had a friend, a relative, a family member who’d been in hospital compared with people who had no moderately close ties with the NHS over the last year what their views on how well the NHS were working.Ìý And you find that people who didn’t have any contact with the NHS tend to be less positive about it compared with people who did have contact, either personally or through a family or friend.

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Porter

It suggests that those people are going by the media representation of the fact the service is struggling, whereas people who actually using it are saying it’s okay?

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McCartney

That seems to be the case but it’s important to note the question that was asked this time was:Ìý All in all how satisfied or dissatisfied would you say you are with the way in which the National Health Service runs nowadays.

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Porter

But the problem with asking a very broad open question like that really is that the answer can be interpreted any way you like.

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McCartney

Yes I think that some people may have answered this question in terms of thinking how their local GP surgery or A&E is run compared with how they think the government is doing with running the whole entire NHS.

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Porter

And one thing for sure Margaret, both camps – those that work in the NHS, and the politicians who oversee it – will use the results as evidence that they are doing a good job.

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One area of the NHS that has come in for regular criticism in recent years is its record on cancer. Our survival rates still lag behind much of Europe for many common cancers, and delay in diagnosis is often cited as one of the reasons why.Ìý So could improving access to rapid referral pathways pick up more cases earlier. The National Institute for Health and Care Excellence thinks so and has recently released draft guidelines proposing just such a move.

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But is simply referring more patients in to the system the answer? What does the evidence tell us?

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Three large international studies have compared UK cancer survival rates in recent years with other countries around the world. Michel Coleman is Professor of Epidemiology and Vital Statistics at the London School of Hygiene and Tropical Medicine.

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Coleman

They tell a very similar story, they’re very consistent in suggesting that for many, but not all, cancers the UK’s survival patterns are or have lagged behind those in many countries with which we are frequently compared, predominantly those in Northern and Western Europe, so France, Germany, Denmark, Finland and so on.Ìý And for most of those countries our survival for most cancers has remained lower, stubbornly lower, than in those countries.Ìý There are exceptions and I think it’s very important to point that out because it’s not ineluctable that survival in the UK is poor, for some cancers it’s good or even better than average, for example Hodgkin’s Disease, for example childhood leukaemia, for example testicular cancer.

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Porter

Looking at cancers that we don’t do so well on, I mean the one that’s often quoted is that of lung and five years survival in Central Europe of 15.4, occurring to Euro Care, and just 9.5 in the UK and Ireland, what factors do we think is behind this gap?

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Coleman

Well early diagnosis, on which there has been so much emphasis, and rightly so, in the last three to five years, is not the only reason.Ìý Yes we do have later stage at diagnosis, that is more advanced cancer diagnosed in many patients than in comparable Western and Northern European countries but even stage four stage our level of survival for some of those cancers is poorer than in comparable countries.Ìý In other words if you’re diagnosed with early stage lung cancer you’re more likely to have shorter survival in the UK than in some of those countries that we’ve been referring to.Ìý And that’s not just early diagnosis, it is well known or should be well known by now, that the proportion of patients who are offered and actually receive surgery of curative intent for lung cancer, by which I mean opening the chest and taking out the part of the lung that appears – well that actually does have a cancer, that varies four fold around England.

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Porter

What about the initiative that’s being mooted to improve diagnosis, to lower the threshold at which the alarm bells if you like are rung that somebody may have cancer?Ìý This is sort of putting a finer mesh on the net, so we send more people in for specialist investigations, something that NICE is looking at at the moment, do you support that?

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Coleman

Yes and no.Ìý First of all it’s been announced that in the Public Accounts Committee that the number of referrals, urgent referrals by GPs, of patients coming to see them for investigation for cancer has increased by just over 50% in the last four years and that per se would seem to be good news, in that more patients are therefore likely to be being diagnosed earlier.Ìý But we have to counterbalance that with the pressure it puts on the health service and the fact that the government’s targets for more than 85% of patients who are diagnosed with cancer being treatment started within 62 days of referral, that target has not been met for over a year.Ìý So on the one hand we’re seeing more patients referred for early diagnosis but fewer patients actually being treated within the stated guideline for early treatment – both are important.

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Porter

The suggestion there is that we’re swamping the services.

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Coleman

Well that certainly is a suggestion that’s been made.

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Porter

Michel Coleman. At the moment NICE has set the threshold for fast track referrals at around a roughly 5% chance of having an underlying cancer, but it’s suggesting that that be lowered to just 3%. A move that will effectively tighten the mesh on the metaphorical net or sieve, which should help pick up more people with cancers earlier. So do GPs think it is going to work? Julia Hippisley-Cox is Professor of Clinical Epidemiology and General Practice at the University of Nottingham, and our own Margaret McCartney is a GP in Glasgow.

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McCartney

What’s really important is that people realise that actually cancer diagnosis is pretty difficult.Ìý I will expect to see one new case of ovarian cancer, as a part-time GP, once every 10 years but every day I’ll be seeing ladies who have quite non-specific symptoms in their tummy or their pelvis who could possibly have ovarian cancer.Ìý So we really are trying to find needles in haystacks very often.Ìý And I think your analogy of a sieve is quite good.Ìý What we’re trying to do in primary care is being an effect sieve, sending people in for further tests when we think that there’s a good chance they have something wrong.Ìý But if we make the gaps in that sieve very big we’ll send many, many people up to hospital who don’t need to go there, who will then lengthen waiting lists, get tests that they don’t need, have investigations they’re not going to benefit from and we might actually do more harm than good overall.

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Porter

Julia, can you explain this concept of thresholds, where they’re set at the moment and where they will be set in the future if these proposals go ahead?

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Hippisley-Cox

Okay, so a positive predictive value, is the technical phrase that’s used, and that for the threshold of say 3%.Ìý And what that would mean is of 100 people three of those would likely to have a diagnosis of a particular cancer that you’re looking at.Ìý And if you put it the other way round 97 people wouldn’t have the cancer.

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Porter

What it means is that when I’m seeing somebody, as a GP, and they come in with a set of bowel symptoms, for instance, that when they get to a certain stage that triggers this 3% I then refer them rapidly into the suspected cancer pathway but actually 97% of them won’t have cancer.

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Hippisley-Cox

That’s right yes.Ìý So I think that it is a low threshold, I think the 2-3% and there’s a basic problem which is how do you actually quantify that risk in the first place.Ìý There generally has been a lack of tools and ability to be able to work out which patients have got that threshold of risk.Ìý But I think the UK is probably leading the way on looking at a risk based assessment of cancer symptoms and get to diagnosis.

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McCartney

And when we look at risk based calculators, take for example women who are in the highest 10% band of risk of having ovarian cancer as judged by their symptoms, so that group of women in that top 10% band only eight of them in a thousand will turn out actually to have a ovarian cancer.Ìý And if we just look at that risk band it will also mean that we miss about a third of women with ovarian cancer.Ìý So using risk based tools can help a bit but they also have problems attached to it.

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Porter

What’s clear Julia is that picking up cancer and picking up cancer early is something of an inexact science.

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Hippisley-Cox

There is some scientific basis to the tools but how they get applied in individual circumstances in clinical practice and how symptoms are interpreted I think there is an art to that to making sure that the right questions are asked and that the right environment is provided to make those assessments.

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Porter

One of the other things that’s being mooted at the moment is that maybe we should open up access directly to patients so they can bypass their GP and order their own special investigations, if they develop worrying symptoms – what do you think of that?

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Hippisley-Cox

I can see there’s an initial attraction on the surface but as soon as you start to think about the implications of that it becomes quite a challenging and possibly alarming scenario because it’s not as simple as saying I want to go for this cancer test, there are a whole different range of tests.Ìý And you have to then bear in mind that once you get the result of the test back, if the test needs any action or further tests to define the diagnosis or further treatment, you’re then going to need to be referred into the system.Ìý And my own view, working as a GP, is I’d much rather be with the patient at the beginning.Ìý But I think there is a middle way with this one, you may have a situation where a GP doesn’t want to refer a patient and the patient still wants to be referred and I think in that circumstance rather than the patient go off on their own and order something off the internet it would be better for the GP and the patient to still progress that referral but to be able to record that it was a patient preference referral, rather than one which the GP had suggested.Ìý And I think over time then you would – if that information is recorded – the system would be able to learn as to whether in fact actually the patient preference itself and that instinct that people often have that something isn’t quite right but they can’t articulate is itself something which needs to be taken account of in a more systematic way.

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Porter

So what you’re saying is that a few years down the line we might be able to look back at those patient initiated referrals and see whether they were good?

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Hippisley-Cox

Yeah.

McCartney

We do know that when GPs refer out with guidelines for a two week wait there is a substantial proportion of patients still do have a cancer diagnosis within that.Ìý In other words it is possible to just have a feeling that something is not right, it might not fit the guidelines for referral but there is a reasonably high chance, not far off, with the chances of referral under guidelines, that that person has got a sinister underlying cause of their symptoms.

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Porter

And that’s because patients and their cancers haven’t read the guidelines.

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Hippisley-Cox

I think there has been research showing that about half of the cancers wouldn’t have met the NICE - old NICE criteria from 2005 - wouldn’t have met the criteria for referral.Ìý So again if there’s a sort of bureaucratic process of saying this person can’t be referred because they haven’t met this tick box set of criteria that overemphasises the importance and the robustness of the guidelines.

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McCartney

I think it’s really important to remember that symptoms don’t tend to be very specific for one particular cancer or disease that needs a particular test.Ìý Very often symptoms can represent lots of different things and that’s where symptom sorting, trying to judge where the source of that symptom might come from, is really important.

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Porter

The one thing that concerns me about patient self-referral is that it’s almost a continuation of this trend that we pursue one type of cancer and then just rule that out, so I see a patient with weight loss and abdominal symptoms, they go and have a cancer of the colon test, that comes back as negative, they get sent back to me but they could still have another cancer and no one’s looking for it.

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McCartney

Absolutely and this is this terrible situation we’ve resulted in where people are referred directly for a test rather than for a specialist opinion.Ìý I really need the specialist in the hospital to help me with people who’ve got complicated symptoms, I think they might need one test or several tests, I don’t know what’s going on, they need to be looked at holistically rather than just sent for one test to exclude one cause of that problem.Ìý And I think that’s creating big problems and big waiting lists in the NHS, where we’re just creating these pathways just to exclude one particular condition rather than looking at the patient’s symptoms and needs as a whole.

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Porter

Margaret McCartney and Professor Julia Hippisley-Cox.

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But picking up cancer late is just one of a number of factors that might responsible for survival rates in the NHS not matching those of many equivalent countries. So what else could be going wrong? Michel Coleman.

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Coleman

I think it’s the organisation of the health service and the funding that goes with it.Ìý Our health service has eaten up a smaller proportion of our gross domestic product than in those of the nations with which frequently compare ourselves, until recently there was a substantial boost in NHS funding when the first NHS cancer plan came in in 2000.Ìý But we have to remember that the health service is a massive ship that’s difficult to turn around, you cannot expect rapid results from even major injections of funding.Ìý And funding isn’t the only issue.Ìý We have fewer beds and fewer doctors per thousand per population, fewer oncologists, fewer MRI machines, the kind of scanner machines that are often used to diagnose cancer, than in comparable countries.Ìý And our access to radiotherapy is both unequal and less than in some other comparable countries.Ìý And so it’s not an issue of the quality of doctors, I’d like to reassure all the clinicians out there, it’s a question of the whole organisation of the health service being improved and more efficient than it has been traditionally.

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Porter
Using your ship analogy, we’re in a convoy, we’re lagging behind the other ships, but are we keeping up with them?

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Coleman

Yes and we’re catching up with some cancers.Ìý The most obvious and heartening example is that of breast cancer in women where our survival was lower, considerably lower, than in the comparative countries I’ve been referring to but it has been catching up steadily over the past 10-15 years.

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Porter

What about access to latest treatments, in terms of expensive drugs for instance, how much of a factor do you think that might be?

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Coleman

Minimal.Ìý The best evidence that I’ve seen suggests that overall the contribution to survival at five years from chemotherapy drugs taken in isolation is about 2-3% out of the 50-60% that is typical.Ìý Please don’t misunderstand me, I don’t mean to say that cancer drugs shouldn’t be prescribed or that they’re useless, neither is true, I think they’re very important but I think what we do need to remember is that the most important components of cancer treatment and therefore long term survival for most of the solid tumours, things like cancer lung, bowel, etc., and with the exception of things like leukaemia, where chemotherapy is much more important, for most of those solid cancers, the solid organ tumours, surgery and radiotherapy are the first and second lines of treatment.Ìý And chemotherapy is very important but not the most important factor in determining the outcome for individual patients.

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Porter

What about the reliability of the data, something you hear mumbled about in the corridors in hospitals is that Britain is very good at collating this sort of data and some of our international colleagues may not be and that might not account for some of the difference.Ìý Does that hold any water?

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Coleman

No.Ìý That’s – that’s a suggestion that was made four or five years ago, a speculation that we have refuted with hard evidence, it’s not that we are better at recording death than say France, Finland, Denmark or Sweden or indeed of linking the fact of death to the previous evidence of a particular person having had a cancer.

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Porter

Professor Michel Coleman. And there is more information on the UK survival rates, as well as a link to the NICE proposals to lower referral thresholds on the Inside Health page of the Radio 4 website.

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Now, back to that annoying sound.

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Clip – Headphone leakage

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Headphones are all the rage, and not just with young people listening to music – people of all ages are increasingly donning them to use their smartphones and tablets to do everything from listen to Radio 4 to watching the latest edition of their favourite soap. But at what cost?

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The French Health Minister, Marisol Touraine, has recently announced that she is planning on introducing a legal limit on headphone volume - as well as on live music at concerts - amid growing concern that people are unwittingly damaging their hearing.Ìý

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Dr Michael Acheroyd is Director of the MRC Institute of Hearing Research in Scotland.

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Acheroyd

Well for many decades now there has been evidence that very loud industrial noises cause permanent hearing damage and many of the famous results of that were collected in the United Kingdom over the last 30 or 40 years and that underpins the health and safety regulations which limits the loudness of sounds that people are exposed to at work.Ìý But that doesn’t apply to people voluntarily going to music concerts.Ìý If any sound is too loud what it does is it damages the inner hair cells of your ear, these are the parts that actually transfer the sound vibrations in the ear to neural impulses that go to your brain and generate the auditory perception.Ìý Once they’re damaged there is no current method of repairing them, hearing aids can compensate for them but they can’t repair them or restore them.Ìý The damage once it’s done, it’s done.

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Porter

At what sort of volumes are we in danger of doing that sort of irreversible damage?

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Acheroyd

Anything over 120-130 decibels, is irreversible certainly but that is like listening to a jet engine take off and standing on the runway.Ìý The health and safety regulations are more about 85-90 decibels.Ìý To give you an example:Ìý a typical household fire alarm is probably about 95 decibels.Ìý So most people will understand how loud one of those is.

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Porter

And how long could you safely listen to that?

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Acheroyd

Well this is one of the interesting things about hearing is that as the volume of the sound goes up the amount of safe time that you can listen to it effectively halves.

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Porter

Dr Michael Acheroyd. And that change in safe listening time is reflected in the current EU safety limit for exposure. At 85 decibels it is up to eight hours a day. But increase that to 100 decibels – as you can easily on most devices – then the safe listening time drops to just 15 minutes.

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But even if an upper limit of 85 decibels was to be enshrined in law, the actual volume produced by a device will vary depending on which of the many types of after-market headphones the user is wearing.

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As acoustic consultant Richard Whitaker discovered while undertaking research at Leeds Metropolitan University.

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Whitaker

When I was doing research at the university we were interested in the level that was leaked from a pair of headphones, in other words you’re sat next to someone on the bus or the train and their headphones seem to be producing a very loud level, whereas other people may not.Ìý But the interesting set of results we got was actually when you use a set level or a set source, which I use 85 decibels of the set source, which is the advisory limit, but the level that was being produced by the headphones would be completely different.

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Porter

What sort of variation did you find?

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Whitaker

The levels produced in the free field, when we were measuring in those terms, was a huge wide variety of results.Ìý And the other interesting point within that is the level that’s being leaked from a pair of headphones doesn’t give an indication to the level that they’re actually listening to, so you may be sat next to someone whose headphones are giving off a very, very loud level and you think oh I’m sure that’s doing some damage, well actually that level that they’re experiencing might not be that loud to themselves, whereas the person sat next to you on the other side, who you can’t hear their headphones at all, they may be playing a level which is extremely high and may be damaging their hearing.

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Porter

Richard Whittaker whose findings suggest Madame Touraine may have her work cut out ensuring all headphones are restricted to a safe volume.

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Now, according to President Obama in his latest State of the Nation speech, we are about to enter a new era in medicine, when the United States is going to lead the way by giving all Americans access to personalised information to help them keep healthier.

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A promise that must have pleased biologist Dr Leroy Hood. He helped pioneer the DNA sequencer used in the Human Genome Project, and is the man behind a radical new model of healthcare – P4 medicine - that might just fit the President’s dream.

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Hood

I think he’s picked up one of the fundamental revolutions that are beginning a current arena of healthcare.Ìý And medicine and disease are incredibly complex and we have for the last 14 years taken what’s called a global systems biology approach to medicine and disease and this has allowed us to disambiguate the enormous complexities they hold.Ìý And what it’s led us to is the realisation that medicine is going to be predictive, preventive, personalised and participatory and each of those four Ps are actually fundamental to this new type of medicine.

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Porter

So practically what’s involved?Ìý If I was to subscribe to your vision – P4 medicine – what would I have to do and what would have to be done to me?

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Hood

Well I think the answer to that is reflected very much in a pilot project that we began about two years ago to contemplate the idea of a longitudinal study of 100,000 well individuals over a period of time.Ìý And what we’ve done, starting in March of this past year, is taken 107 individuals and put them through such a programme where we determine their genome sequence, where we take blood, urine samples every three months and we analyse their genes and their proteins and their metabolites.Ìý We’ve actually analysed the gut microbiome every three months and then we get self-measurements with fit beds that measure activity and quality of sleep, blood pressure, pulse, weight.Ìý And the idea is that we can integrate for each individual all of these types of data together and they give us a listing of actionable possibilities wherein it will improve your wellness and/or avoid disease.Ìý A key part of that are coaches that can actually bring these actionable possibilities to the individuals and explain what they are but even more important put them in the context of what each individual’s hopes for their own health so as to persuade them to initiate these changes.

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Porter

But do we have the data, because there’s a lot of prediction going on here isn’t there, you’re predicting on the basis of someone’s genetic makeup, you’re predicting on their lifestyle perhaps and some other parameters – their weight for instance – at what stage will you be able to produce, do you think, looking at this pilot, some hard outcome data in terms of reduced incidence of disease, mortality, morbidity etc., the sort of things that your peers might well ask if they’re to adopt this?

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Hood

Well, there are really two aspects to it.Ìý I think there are many things short-term where you can show favourable improvements for some of the long term statistics, it obviously is going to take a little bit longer.Ìý But to give you an example:Ìý we’ve identified of the 107 two individuals that have defective genes for hemochromatosis, a defect in blood that elevates iron, and this iron actually attacks your pancreas, your liver and your heart.Ìý We identified those individuals before they transitioned into disease and hence prevented them from becoming chronic carriers of this disease. Obviously we want to move from a hundred individuals to a thousand and ten thousand.

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Porter

If I wanted to subscribe to the programme as it stands at the moment what sort of annual cost would I be looking at?

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Hood

I would guess in the next year, when we get started, we’re probably going to be looking at $3,000 or so per individual.

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Porter

Per annum?

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Hood

Per annum.

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Porter

Well listening to that was Margaret McCartney.Ìý Margaret, I dare hardly ask.

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McCartney

There’s just so much jargon, I hardly know what to do with it Mark.Ìý The one big P that’s missing here is proof, does this actually work?Ìý This sounds to me like a massive big data dump, taking every measurement you possibly can about the human body and then handing it back to people to make of it what they will.Ìý I don’t think this is going to work.Ìý I think it may in many ways be counterintuitive and be bad for us because I think many of the data that we can generate from our own bodies actually doesn’t help us very much to know what to do with it.

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Porter

But allow me to play devil’s advocate here Margaret because we don’t know that it doesn’t work either and I suppose if we don’t have pilots like this we’ll never know.

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McCartney

Well take the example of hemochromatosis, this iron storage disorder, and the UK National Screening Committee has looked at all the evidence and concluded that screening for it in the general population is a bad idea.Ìý And yet this is what’s being recommended by this kind of strategy.Ìý And my really big concern is that we don’t look at the big picture and what is the big picture – smoking is bad for us, exercising is good for us, keeping trim is good for us, having a Mediterranean diet, having a job.Ìý I think if we don’t take a properly holistic view about where we’re going with public health we’re going to go down a blind alley, wasting a huge amount of time and effort in the process.Ìý And also the health inequalities are the staggering problem that we have just now in the UK and we’re still not doing enough about will remain standing.

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Porter

Margaret McCartney, who isn’t enamoured with Dr Hood’s vision of the future.Ìý As always you’ll find more information on our website.

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Coming up next week: morale – NHS satisfaction may be high, but morale among many NHS staff is low, and that has knock on effects for those who depend on the service. Patients. I will be learning more about a new initiative to tackle the problem. And could the nation’s appetite for sugary drinks mean children are reaching puberty earlier? Join me next week to find out.

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ENDS

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  • Tue 3 Feb 2015 21:00

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