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So I'm very pleased to introduce Chris and his perspective from the institute,

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really focussing on the patient experience of integrated care and how that can inform the models of service delivery.

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And I'm really looking forward to your tour because I first heard about the picture in the sheet when Stuart Bell talked about that.

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He is the chief executive of Oxford Health NHS Foundation Trust.

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So some of you may work there or know about the trust if you if you're from Oxford.

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And he really thinks this is very important and this is something that is coming more and more into the work we do in Oxford Health.

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And I think when we're thinking about integrated care and the political agenda is going to be really crucial.

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So welcome.

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So first, so thank you all for being here this morning and thank you to the organisers for the opportunity to talk about this as introduced.

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I think it's very fitting that my talk follows on from Dr. Hicks and the discussion of the policy agenda and of the role of integrated care.

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I'm going to be talking about a very similar subject, but going to take it in a slightly different direction.

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So I got to I think this is all very, very timely and very relevant.

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Now, I remember one of the very first conference presentations I ever did was on older people's experiences in emergency departments.

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I remember the chairman being very amused myself, quite young at the time, was talking about all the people's care.

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I don't think anyone would be amused anymore, though,

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because I think older people's care is so essential to everyone as moved so far up the agenda for the NHS and social care.

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Likewise, integrated care is something that everyone's talking about.

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Likewise, the funding crisis facing health and social care in all of these issues fit tightly together in the context of an ageing population.

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I guess what my perspective is a bit different is that I'm very focussed on persons and to care.

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I'm very focussed in the role of patients, service users and people in shaping the care that they receive and being involved in it.

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And I guess what I want to take you through is that sort of perspective and hopefully leave you with an idea about

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the role of the person receiving care as part of that care delivery team as part of that multidisciplinary team.

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I'll tell you a bit about where I'm from. I'm from the picture.

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And I should mention that Stuart Balfour, chairman of the Competing Interests and we are a charity based in Oxford,

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we have a vision of the highest quality health and social care for all,

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always in the way we try to go about promoting the idea of persons and to carers freephone we do policy influence.

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We try to work with professionals to provide the best tools and evidence,

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and we try to empower people to put patients Services's and carers at the centre of care services.

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I'm old to Eleanor. I'll tell you quickly what I'm going to talk about.

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I'm first going to talk about how we why we measure people's experiences of care, going to fit that into the context of personal care in general.

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Then I'm going to try and come up with a definition of integrated care that we can work with,

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because I think the term integrated care is used so widely, so extensively and so fortunately within the policy debate at the moment.

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But it's often quite difficult to pin down what people mean by it.

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I think there's often a lot of variance in what our meaning is imbued in it and what we should take from it.

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So I want to unpack that a bit, particularly in the context of a person's sense of perspective and in the context of all the person's care.

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I don't want to look at how older people experience this and construct it and what their views are of integration and coordination.

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And then I hope you want to put it all together.

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But by looking at some actual examples of people's experiences of care and looking at what we can learn from those.

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So what do we imagine the user experience?

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Hopefully a lot of you have heard a bit about personal experience already engaged with the idea of patient experience.

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I can tell you, if I was talking to people from a similar background 10 years ago, I wouldn't be able to say that.

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That's a sign of how far it's come up, the agenda and how quickly.

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Um, but, you know, I think we take patient experience to be a measure of person centred care.

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Person centredness is a quality of care that puts people at the heart of the services they receive,

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involves and makes them an active participant rather than a passive user.

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Um, and we need to measure the patient experience of care to know how good it is and to be able to improve it.

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I think that improvement perspective is essential to everything that the patient experience movement tries to do.

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Um, we do it to see through the patient's eyes. It's very easy to take a professional perspective and take a sort of clinical detachment

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to the point where we forget what it's like to be a patient or a recipient of care.

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And the idea that seeing from the other perspective is important is on the rise.

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Um, this is not to be built into policy language in the UK.

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Well, for the last 15 years or so, so the NHS plan in 2001 is very clear about putting patients at the heart of health care.

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This isn't the first time this language appears in policy documents,

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but it's one of the clearest and most sensual expressions to it in the evolving policy debate.

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And that's further embedded in 2008 and 2009 by Lord D'Arcy's next stage review,

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which is intended to look at how the NHS would organise and deliver a quality service into the future.

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Lord, does he argue that patient experience would come to be seen as the most powerful lever for choice and quality and also for service improvement.

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So we have those two common threads.

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I think one is a sort of moral duty around a person centred around patient experience, seeing through the patient's eyes,

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putting them at the centre of services, making them an active participant or giving them the opportunity to be at any rate.

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And the other is more practical one about service improvement. And we use patient experience to learn how to do better.

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And you'll know I talk exclusively about patient experience to try and avoid the word satisfaction,

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although I think when people think about getting feedback from patients and service users,

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satisfaction is often the first place to go to, and it's often the kind of thing that is assumed to be measured.

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In fact, the literature is quite, quite clear and those are quite good consensus.

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That satisfaction is a very poor way of measuring the quality of care.

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To measure someone's satisfaction is take a very narrow view of a subjective experience, and it is very, very subjective.

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We know that it's very hard to take action on satisfaction as well as if someone is satisfied or they are not.

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All that implies is that their expectations of care have or have not been met.

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You don't know from someone's dissatisfaction what you did wrong or what you could do better next time.

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And instead, what we do with experience is we try to ask people to report on specific elements of their care.

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We ask them if they had trust and confidence and clinicians. We ask them if doctors listen.

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We ask them if they had enough time as part of their consultation and so on by asking these questions instead.

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What we try to elicit is a sense of where things went wrong if they did, and hopefully as more learning in that period.

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Now, there's been a lot of research over the years about the importance of this,

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and we found that not only is good user experience important in its own right,

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but there is a very strong link between user experience and some other indicators of quality,

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such as clinical effectiveness, safety and medical adherence.

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And that relationship is now enshrined in NHS policy as part of the definition of health care service quality.

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And this, again, is going back to Lord.

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Does his work in 2008, does it defined health care quality as having free related and equally important components patient experience,

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patient safety and clinical effectiveness? Now to provide an effective health service and to be able to improve?

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We need good measures of all of those,

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and we can start to think about how different kinds of measure provide evidence of these different elements of quality.

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So for safety, we can look at things like mortality rates, incident reporting, never events for clinical effectiveness.

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We can look at clinical audits, readmission rates, outcome measures and so on.

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And then for the new field of patient experience, we need to look to the patient and get their view.

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That can either be for routine mechanisms like looking at compliments and complaints that are received,

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looking at online commentary, or can be through specialised collections of patient experience, sometimes called Prem's.

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And I don't particularly like myself.

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And now I want to move on and talk a bit about what we mean by integrated can look at the definition of that term.

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I think there have been a lot of different attempts to define integrated care and they each bring different kinds of meaning to.

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I've just got a few of them on screen and we can see the different ways that they structure the relationship between users and services.

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So we could define integrated care as a coherent, coordinated set of services plan, delivered and managed across a range of organisations.

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We could finance health and social care working together. And both of those seems to me to be very structural definitions,

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very much about the way organisations interact or about the way care is planned as a kind of structural and organisational level.

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Um, there's some rather more cynical views of what integrated care means and current policy context as well.

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So I've seen someone describe it as a stealthy way of transferring money out of the NHS.

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I think they were joking, but I'm quoting them on it anyway, or simply is a very slippery phrase I should elaborate on.

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That was a stealthy way of transferring money out of the NHS. This is a reference.

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The Better Care Fund, which is the brilliantly named replacement of the Integrated Care Transformation Fund,

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this is the move of around three percent of the NHS budget out of the NHS ring-fence into a shared pool of health and social care,

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which is seen by some as vital to integration and seen by others as a kind of cash crop away from the NHS.

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I'm not going to argue about which, um, but all of these definitions are very different and in fact there are lots more.

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I mean, I've cherry picked, but there are at least 175 different operational definitions of integrated care.

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And that's the challenge. If we want to make it a reality, we need to know what the actual definition is.

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I do think a lot of the definitions have this in common that they focus on.

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Gaps between services are very negatively expressed in there about what happens when things go wrong,

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about the gaps in between not expressed very well in this document document from the Department of Health in 2012.

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Too often people experience gaps in service provision failures and communication and poor transitions in care.

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So it's about the negatives. It's about where things have gone wrong. It's about how services have let people down.

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I don't think that's how patients see it.

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I think if we want to take a person centred view of integrated care instead, we need to approach it from an altogether different direction,

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not about services and where they go wrong, but about what people want out of a car service, what health care means.

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And this is really important in the context of active ageing.

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If we're going to have a holistic view of what it means to age well and have a good quality of life,

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we need to look at how services don't force people to comply with them, but fit their lives.

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Now, one quote here to illustrate this.

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The ideal of seamless, well coordinated care has been elusive,

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partly because of this top down approach of preventing service orientated, partly because of a lack of patient centric focus.

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And I think the first really clear expression of the person centred view is from Lloyd.

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And in 2005, who critically describe integrated care, is imposing the patient's perspective as the organising principle of service delivery.

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And I really like that. And I think it's really important. It gives us a way of saying care coordination that we might not otherwise have.

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It also fits really well with what users tell you they want about the integration of services.

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Know the Cancer Campaign Group in 2012 did some research comprising focus groups and interviews with people with cancer,

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including a lot of older people. I looked at some of the things that they said about care coordination,

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what they took this term to mean all sorts about integrate care and unsurprisingly,

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people say integrated care, never heard of it doesn't mean anything to me.

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But when they get into a discussion about what it is and what it involves and what it could mean for them, people are quite clear.

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They want coordination of care. They want coordination between professionals so that, you know,

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there's a consistency about how they're looked after and about the information that follows them.

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They want a one stop shop. They want accessibility from one point to another, and they want collaboration.

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They want everyone to know everything about the patient throughout their journey.

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And that's, again, really important. That recognition that this is about the individual is a journey which can be very different.

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We've talked a bit about co morbidities and the complexities that it brings.

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I think as you start looking at individual patient patient journeys because of that almost infinite range of complexity,

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population sizes tend towards one. That's a challenge.

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Similarly, this is a word cloud from some work done by the King's Fund.

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I'm looking at how people define integrated care, and this includes professionals and patients and representative groups.

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But the words that come out, I think a lot more positive, the words that jump out to me or seamless coordination,

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sharing and so on, so that they're much more about getting it right and it's much more positive way of looking at it.

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It's more about keeping everything flowing smoothly.

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And I think that's a nice way to view it, because this is now encapsulated in a consensus document called Nazife for Integrated Care,

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published by National Voices and commissioned by Cross Government Consortium.

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That's a cross national consortium, including NHS England, the local government association and so on.

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And that defines integrated care as person centred, coordinated care.

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And that's the definition I like to work with.

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I think it's a good definition because I see it as capturing the key issues for people who use services.

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I think it's a good. Because I say it's been irreducibly complex as well.

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I don't think good integrated care in these terms is person centred care that is additionally well coordinated.

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I think it's something that brings those two together. You can coordinate care without taking that personal perspective or you can really,

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really focus on the person without providing the continuity, coherence and structure that they want.

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So these packages are really well for me. And I'll come back to some of the related work on that.

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What does this mean for all the people and how am I doing for time? Right.

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Um, I think I'm fortunate that Dr. Higson talked a lot about the relevance of integrated care for older people.

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So I can largely take it as read at this point.

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And when you agree that it's a matter of consensus, all the people do tell you that coordination of care is particularly important for them.

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And policy makers are united in the view that it's particularly important because older people are greater users of services,

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more likely to have multiple conditions, more likely to use a range of services.

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And all of those factors mean that if we're going to deliver integrated care, the place we really want to get it right is for older people.

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And if we're going to deliver as person centred, coordinated care,

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that means we need to understand what all the people want and work out how we're going to do that both within services and between them,

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because I don't think this is just the entire organisational problem.

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Um, so further work by National Voices and others tried to expand the narrative to look specifically at older people.

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How does this idea of person centred coordinated care?

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And very once you get into older age and how does it fit into an idea of active ageing and what people tell you that they want?

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And what there's a lot of consistency about both in this work,

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my own work and the work by others is that people want independence, you know, they want safe independence.

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They want to be left alone to get on with it.

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They want to be looked after and cared for, but they want to be respected and be autonomous as far as they possibly can to that.

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And they also want to be involved in decision making. They don't want decisions made for them or about them.

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They want to be part of the process. They want to be guiding the process for as long as they can.

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And they want interaction, social contact, really important part of quality age,

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and I think is not feeling that isolation that can so often happen for people.

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And the ways in which people describe this is in terms of as we get into older age, losing peers through disease and death and so on,

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and the feeling that they can be left alone, they don't have the peer interaction that they might otherwise have,

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but they still want to be part of their community. Um, this is summed up in a set of statements.

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I'm not going to read through them all because that would take a very long time.

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But these try to give a use of voice or personal voice to what it means to have person centred,

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coordinated care for older people, some of the ones that highlight or being recognised for what I can do,

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rather than having assumptions made about what I can't do, being supported to be independent, being able to make my own decisions if I want to,

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and having services work together to support me, to live the life I want to live to the best of my ability.

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So I think if you ask him, what do older people want in care coordination, it fits very well into this model of activation,

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fits very well into the idea of person centred, coordinated care with the patient is the organising principle.

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Now, I said at the very start that if we believe in person centred approach, we need to measure it to be able to improve quality.

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I want to talk a bit about how we measure now what that means specifically for all the people.

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I don't think there's a lot of different ways of getting feedback,

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and I could talk all day about the kind of range of approaches that are being used and that could be used.

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But I'm going to focus particularly on surveys.

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Um, surveys are probably the most important example of quantitative data collected about user experience of care.

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And in the NHS, we're fortunate to have one of the world's largest patient services, the survey programmes.

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We coordinate a lot of that, the Picker Institute. So I should mention that I may be slightly biased in my view about this.

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This is the best thing since sliced bread. Um, but we conduct surveys of people's experiences in acute hospital settings in

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community mental health and primary care through specialist conditions and so on.

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And these range of national surveys provide evidence about people's experiences interacting with different kinds of providers.

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Um, they have a lot of common features. Typically, we are talking about Postal Service with very.

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Samples to contextualise that we currently have live a national survey of hospital in patients that

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is going out to somewhere in the region of one hundred seventy five thousand people this year.

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We've got something like 80 or 90000 responses.

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And what that means is the data that we get back is representative a level so we can look at people's experiences at the jail.

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We can look at people's experiences, Addenbrooke's or UCLA or Imperial or wherever.

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We can also start to break it down by age group, which will be important in the second.

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And these results are really embedded into the way services are assessed and regulated.

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So Siekierski make extensive use of performance, assessment and regulation, and they're also available quite openly for secondary analysis.

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So if anyone is interested in conducting their own research, the data from the patient survey programmes is available via the UK data service and is

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freely accessible and it's kind of raw format throughout all of the surveys that we do.

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We like to look at the demographic trends and the underlying differences in populations to try and

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find out what drives good experience and what factors are associated with better or worse care.

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Consistently, we find that people over 65 report higher, a higher satisfaction, better experiences and better care in a range of settings.

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No Sepultura in our surveys and internationally it's very widely observed.

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And in fact, in England we also find that older people report better experiences of just about all public services.

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So simply not. Why is that?

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The common assumption is that it's about lower expectations, that older people are thankful for what they get, aren't demanding of more,

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or sometimes there's a generational idea that they're the oldest people in society have lived

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through harder times and therefore that they're just happy to be getting any care at all.

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Newer work suggests that's probably not true,

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and intuitively it doesn't fit with the kind of personal experiences one encounters from older people anyway.

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So new research has found that older people actually have higher expectations of care or higher realistic expectations.

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When you ask them to think about what they actually expect to receive versus what's plausible, but are more likely to report that those are met.

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So does that constitute a gratitude by so I don't think it does.

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Does it constitute genuine differences in the quality of care? I think it might be difficult and also the other confounding factors.

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So when you're looking at cross-sectional data from surveys or similar sources, you have to take into account the fact that there will be clustering.

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There will be a lot of confounding factors such as ethnicity, wealth, health status and so on, and all of those good influences.

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But this overall pattern is clear and consistent.

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And to illustrate it in the context of the National Community Mental Health Survey, this is data from a survey we conducted last year.

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This is based on 13000 responses. And this shows how, as your age increases, your mean score for an overall rating, question changes.

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Now, this is a simple nauts ratings. People had an 11 point scale right there, Carol, is very, very crude measure.

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It's not the kind that would normally recommend, but it's a good introduction to the topic.

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And what you can see quite clearly is that in the younger age groups, the survey starts at age 18,

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up to say about 50 or 40 or 50 people report quite a poor experience.

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Again, average in school, just over six. By the time you've got up to 65, 70, it's getting much higher.

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The fairly steady upward trend, um, that drops off a little bit once you hit 80 and then the data becomes a lot less reliable beyond that,

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because we're dealing with smaller numbers of respondents were dealing with a smaller population and community mental health.

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Um, that trend persists when you look at more specific questions about particular areas of experience that are

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related to the things that older people tell us they want most about health and social care services.

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So in each of these charts, we have aged broken into five categories, 16 to 35, 36 to 50, 51 to 65 and 80 plus.

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So greater than 80. You can see a very similar trend.

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And all of them are the text is probably too small and too tilted to read.

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So I'll point out the top left one is I do get seen enough.

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You need to have enough contact with the mental health service on about or you give me enough time to the.

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Gus, law needs and treatment in the bottom corner here,

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this one is about being involved in deciding what treatments or therapies you use and receive

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and the final one in the bottom right is about being supported to take part in local activities.

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So very directly,

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this address is that priority around social interaction and community engagement very directly addresses that question about involvement in decisions,

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very directly addresses that question about getting the right services at the right time.

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And what we do consistently say is if you're over the age of 65, you're likely to report a more positive experience that job offers.

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You get a bit older, but it was a clear pattern. In fact, we have 33 evaluative questions on that survey.

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Out of them, people over 65 give significantly more positive responses than their younger peers on 27 items.

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There are only two items where all the people report less positive experiences.

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And those are these ones about agreeing what kind of care you will receive and about

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knowing who to contact if you have a crisis out about what can we take from this?

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Superficially, the suggestion is that older people have a fantastic experience of the report better care than younger people.

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They are therefore more happy with the services they receive.

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Um, I think actually it's a lot more complicated that I think in all of these, with the big scope for improvement,

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big gaps away from the top of these charts we looking at people are reporting a better experience,

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but still reporting an experience that could be significantly better.

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Um, we also need to be careful about, I think, inherent response characteristics and traits.

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And that is the thing that we can't adequately account for unless to what extent do the way

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people choose to respond to questions about how they receive can influence the outcomes?

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And one possibility that I think it's really important to be mindful of as a provider of care, therefore,

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is that some people from certain demographic groups are more likely to acquiesce to questions about the candidacy.

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And that could be both in the context of the survey, but also in context of face to face provision.

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So when you're providing care, be conscious that some people might say yes and might report.

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But the experience is what they want for reasons other than the quality of care is actually meeting their expectations.

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And I think that's a really important thing that actually all audiences, um, so I'll wrap up slightly over time.

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And what I hope I've got across is that I think user experience is one component of health care

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quality and a really good way of measuring the person centred is that that kind of individualised,

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personalised element of care is not the only measure of care quality.

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And it would be it would be foolish for me to argue that we could stop measuring patient safety or

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clinical effectiveness or service expenditure or other indicators of health care quality and efficiency.

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I think we need to match them all and look at them holistically.

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Um, I think this fits very tightly to the development of integrated care in the ageing population,

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because what we hear consistently from older people and about older people is

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that this is a group who care coordination in the sense of person centred,

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coordinated care is really particularly important. And we have to do it right to do that.

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We have challenges. We're going to need to find better ways of looking at how people are handed

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off between services and how people experience things in their own pathways.

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A limitation to the kind of service I've described is that they are quite provider centric.

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And in the future,

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challenge to those services is to look more at the patient journey and follow the individuals better and those various bits of work.

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And the way to start doing that, I hope that I mean,

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in the features that will have better data about how people receive coordination between arranged services,

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and I hope that information will be useful for improving the quality of care. And I leave you there.

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Thank you. Thank you very much.

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That's great. I know we're looking over any any questions because I had what and I was just curious about the VA survey of hospitals nationally.

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Do you take any measures to try and increase the response rates you get from

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vulnerable older people that just might see with depression or with dementia?

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You might not want to play that, but yeah, that's a good question.

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So across all sectors, what we tend to find is older people are more likely to respond.

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In general, I'm not. The older you get up to a point, the more the greater your propensity to respond is.

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Again, that drops off once you get into the very old age groups, around 80.

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The mechanisms we use in national service to try and address this is to encourage people to provide proxy responses or to assist.

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So if people are unable to complete a survey on their own, they're invited to complete it with a friend or family member.

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And let's go through the questions of them and be supportive.

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Now, that is probably an imperfect word to me, because it means we lose the directness of the experience.

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And, you know, we're relying on assistance from getting someone's own viewpoint of the problem.

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And it does have problems of how you interpret the data,

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because we also find out what properties are used and reports of the quality of care are much poorer,

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even after you take into account all other demographic factors.

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That could even mean that people who respond for someone else are more critical about that care.

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Or it could mean that there's an unmeasured component. A lot of people who need a proxy because they are in worse health or because

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they care has been poor for some reason or the ones who are using a proxy.

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What we don't have is any evidence from diets where you get people to complete a proxy and prefer to see what was a different topic first.

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That's why I would say it's not the best place to get user experience information in general.

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Is that the point of care? And for all the people who engage with all the psychology,

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I think I'm trying to find out through those encounters what the experience is like is the best way to do it.

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Thank you very much. Thank you. Thanks. That's great. So now, you know, coffee time that until 11 o'clock we'll come back here to 11.

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And if you have any sort of general career questions, then that will be a seminar one.

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So that's on the ground floor and the Alafia will all be.

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So if you have any questions about the.