So I'm very pleased to introduce Chris and his perspective from the institute,
really focussing on the patient experience of integrated care and how that can inform the models of service delivery.
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.
He is the chief executive of Oxford Health NHS Foundation Trust.
So some of you may work there or know about the trust if you if you're from Oxford.
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.
And I think when we're thinking about integrated care and the political agenda is going to be really crucial.
So welcome.
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.
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.
I'm going to be talking about a very similar subject, but going to take it in a slightly different direction.
So I got to I think this is all very, very timely and very relevant.
Now, I remember one of the very first conference presentations I ever did was on older people's experiences in emergency departments.
I remember the chairman being very amused myself, quite young at the time, was talking about all the people's care.
I don't think anyone would be amused anymore, though,
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.
Likewise, integrated care is something that everyone's talking about.
Likewise, the funding crisis facing health and social care in all of these issues fit tightly together in the context of an ageing population.
I guess what my perspective is a bit different is that I'm very focussed on persons and to care.
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.
And I guess what I want to take you through is that sort of perspective and hopefully leave you with an idea about
the role of the person receiving care as part of that care delivery team as part of that multidisciplinary team.
I'll tell you a bit about where I'm from. I'm from the picture.
And I should mention that Stuart Balfour, chairman of the Competing Interests and we are a charity based in Oxford,
we have a vision of the highest quality health and social care for all,
always in the way we try to go about promoting the idea of persons and to carers freephone we do policy influence.
We try to work with professionals to provide the best tools and evidence,
and we try to empower people to put patients Services's and carers at the centre of care services.
I'm old to Eleanor. I'll tell you quickly what I'm going to talk about.
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.
Then I'm going to try and come up with a definition of integrated care that we can work with,
because I think the term integrated care is used so widely, so extensively and so fortunately within the policy debate at the moment.
But it's often quite difficult to pin down what people mean by it.
I think there's often a lot of variance in what our meaning is imbued in it and what we should take from it.
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.
I don't want to look at how older people experience this and construct it and what their views are of integration and coordination.
And then I hope you want to put it all together.
But by looking at some actual examples of people's experiences of care and looking at what we can learn from those.
So what do we imagine the user experience?
Hopefully a lot of you have heard a bit about personal experience already engaged with the idea of patient experience.
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.
That's a sign of how far it's come up, the agenda and how quickly.
Um, but, you know, I think we take patient experience to be a measure of person centred care.
Person centredness is a quality of care that puts people at the heart of the services they receive,
involves and makes them an active participant rather than a passive user.
Um, and we need to measure the patient experience of care to know how good it is and to be able to improve it.
I think that improvement perspective is essential to everything that the patient experience movement tries to do.
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
to the point where we forget what it's like to be a patient or a recipient of care.
And the idea that seeing from the other perspective is important is on the rise.
Um, this is not to be built into policy language in the UK.
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.
This isn't the first time this language appears in policy documents,
but it's one of the clearest and most sensual expressions to it in the evolving policy debate.
And that's further embedded in 2008 and 2009 by Lord D'Arcy's next stage review,
which is intended to look at how the NHS would organise and deliver a quality service into the future.
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.
So we have those two common threads.
I think one is a sort of moral duty around a person centred around patient experience, seeing through the patient's eyes,
putting them at the centre of services, making them an active participant or giving them the opportunity to be at any rate.
And the other is more practical one about service improvement. And we use patient experience to learn how to do better.
And you'll know I talk exclusively about patient experience to try and avoid the word satisfaction,
although I think when people think about getting feedback from patients and service users,
satisfaction is often the first place to go to, and it's often the kind of thing that is assumed to be measured.
In fact, the literature is quite, quite clear and those are quite good consensus.
That satisfaction is a very poor way of measuring the quality of care.
To measure someone's satisfaction is take a very narrow view of a subjective experience, and it is very, very subjective.
We know that it's very hard to take action on satisfaction as well as if someone is satisfied or they are not.
All that implies is that their expectations of care have or have not been met.
You don't know from someone's dissatisfaction what you did wrong or what you could do better next time.
And instead, what we do with experience is we try to ask people to report on specific elements of their care.
We ask them if they had trust and confidence and clinicians. We ask them if doctors listen.
We ask them if they had enough time as part of their consultation and so on by asking these questions instead.
What we try to elicit is a sense of where things went wrong if they did, and hopefully as more learning in that period.
Now, there's been a lot of research over the years about the importance of this,
and we found that not only is good user experience important in its own right,
but there is a very strong link between user experience and some other indicators of quality,
such as clinical effectiveness, safety and medical adherence.
And that relationship is now enshrined in NHS policy as part of the definition of health care service quality.
And this, again, is going back to Lord.
Does his work in 2008, does it defined health care quality as having free related and equally important components patient experience,
patient safety and clinical effectiveness? Now to provide an effective health service and to be able to improve?
We need good measures of all of those,
and we can start to think about how different kinds of measure provide evidence of these different elements of quality.
So for safety, we can look at things like mortality rates, incident reporting, never events for clinical effectiveness.
We can look at clinical audits, readmission rates, outcome measures and so on.
And then for the new field of patient experience, we need to look to the patient and get their view.
That can either be for routine mechanisms like looking at compliments and complaints that are received,
looking at online commentary, or can be through specialised collections of patient experience, sometimes called Prem's.
And I don't particularly like myself.
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.
I think there have been a lot of different attempts to define integrated care and they each bring different kinds of meaning to.
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.
So we could define integrated care as a coherent, coordinated set of services plan, delivered and managed across a range of organisations.
We could finance health and social care working together. And both of those seems to me to be very structural definitions,
very much about the way organisations interact or about the way care is planned as a kind of structural and organisational level.
Um, there's some rather more cynical views of what integrated care means and current policy context as well.
So I've seen someone describe it as a stealthy way of transferring money out of the NHS.
I think they were joking, but I'm quoting them on it anyway, or simply is a very slippery phrase I should elaborate on.
That was a stealthy way of transferring money out of the NHS. This is a reference.
The Better Care Fund, which is the brilliantly named replacement of the Integrated Care Transformation Fund,
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,
which is seen by some as vital to integration and seen by others as a kind of cash crop away from the NHS.
I'm not going to argue about which, um, but all of these definitions are very different and in fact there are lots more.
I mean, I've cherry picked, but there are at least 175 different operational definitions of integrated care.
And that's the challenge. If we want to make it a reality, we need to know what the actual definition is.
I do think a lot of the definitions have this in common that they focus on.
Gaps between services are very negatively expressed in there about what happens when things go wrong,
about the gaps in between not expressed very well in this document document from the Department of Health in 2012.
Too often people experience gaps in service provision failures and communication and poor transitions in care.
So it's about the negatives. It's about where things have gone wrong. It's about how services have let people down.
I don't think that's how patients see it.
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,
not about services and where they go wrong, but about what people want out of a car service, what health care means.
And this is really important in the context of active ageing.
If we're going to have a holistic view of what it means to age well and have a good quality of life,
we need to look at how services don't force people to comply with them, but fit their lives.
Now, one quote here to illustrate this.
The ideal of seamless, well coordinated care has been elusive,
partly because of this top down approach of preventing service orientated, partly because of a lack of patient centric focus.
And I think the first really clear expression of the person centred view is from Lloyd.
And in 2005, who critically describe integrated care, is imposing the patient's perspective as the organising principle of service delivery.
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.
It also fits really well with what users tell you they want about the integration of services.
Know the Cancer Campaign Group in 2012 did some research comprising focus groups and interviews with people with cancer,
including a lot of older people. I looked at some of the things that they said about care coordination,
what they took this term to mean all sorts about integrate care and unsurprisingly,
people say integrated care, never heard of it doesn't mean anything to me.
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.
They want coordination of care. They want coordination between professionals so that, you know,
there's a consistency about how they're looked after and about the information that follows them.
They want a one stop shop. They want accessibility from one point to another, and they want collaboration.
They want everyone to know everything about the patient throughout their journey.
And that's, again, really important. That recognition that this is about the individual is a journey which can be very different.
We've talked a bit about co morbidities and the complexities that it brings.
I think as you start looking at individual patient patient journeys because of that almost infinite range of complexity,
population sizes tend towards one. That's a challenge.
Similarly, this is a word cloud from some work done by the King's Fund.
I'm looking at how people define integrated care, and this includes professionals and patients and representative groups.
But the words that come out, I think a lot more positive, the words that jump out to me or seamless coordination,
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.
It's more about keeping everything flowing smoothly.
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,
published by National Voices and commissioned by Cross Government Consortium.
That's a cross national consortium, including NHS England, the local government association and so on.
And that defines integrated care as person centred, coordinated care.
And that's the definition I like to work with.
I think it's a good definition because I see it as capturing the key issues for people who use services.
I think it's a good. Because I say it's been irreducibly complex as well.
I don't think good integrated care in these terms is person centred care that is additionally well coordinated.
I think it's something that brings those two together. You can coordinate care without taking that personal perspective or you can really,
really focus on the person without providing the continuity, coherence and structure that they want.
So these packages are really well for me. And I'll come back to some of the related work on that.
What does this mean for all the people and how am I doing for time? Right.
Um, I think I'm fortunate that Dr. Higson talked a lot about the relevance of integrated care for older people.
So I can largely take it as read at this point.
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.
And policy makers are united in the view that it's particularly important because older people are greater users of services,
more likely to have multiple conditions, more likely to use a range of services.
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.
And if we're going to deliver as person centred, coordinated care,
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,
because I don't think this is just the entire organisational problem.
Um, so further work by National Voices and others tried to expand the narrative to look specifically at older people.
How does this idea of person centred coordinated care?
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?
And what there's a lot of consistency about both in this work,
my own work and the work by others is that people want independence, you know, they want safe independence.
They want to be left alone to get on with it.
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.
And they also want to be involved in decision making. They don't want decisions made for them or about them.
They want to be part of the process. They want to be guiding the process for as long as they can.
And they want interaction, social contact, really important part of quality age,
and I think is not feeling that isolation that can so often happen for people.
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,
and the feeling that they can be left alone, they don't have the peer interaction that they might otherwise have,
but they still want to be part of their community. Um, this is summed up in a set of statements.
I'm not going to read through them all because that would take a very long time.
But these try to give a use of voice or personal voice to what it means to have person centred,
coordinated care for older people, some of the ones that highlight or being recognised for what I can do,
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,
and having services work together to support me, to live the life I want to live to the best of my ability.
So I think if you ask him, what do older people want in care coordination, it fits very well into this model of activation,
fits very well into the idea of person centred, coordinated care with the patient is the organising principle.
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.
I want to talk a bit about how we measure now what that means specifically for all the people.
I don't think there's a lot of different ways of getting feedback,
and I could talk all day about the kind of range of approaches that are being used and that could be used.
But I'm going to focus particularly on surveys.
Um, surveys are probably the most important example of quantitative data collected about user experience of care.
And in the NHS, we're fortunate to have one of the world's largest patient services, the survey programmes.
We coordinate a lot of that, the Picker Institute. So I should mention that I may be slightly biased in my view about this.
This is the best thing since sliced bread. Um, but we conduct surveys of people's experiences in acute hospital settings in
community mental health and primary care through specialist conditions and so on.
And these range of national surveys provide evidence about people's experiences interacting with different kinds of providers.
Um, they have a lot of common features. Typically, we are talking about Postal Service with very.
Samples to contextualise that we currently have live a national survey of hospital in patients that
is going out to somewhere in the region of one hundred seventy five thousand people this year.
We've got something like 80 or 90000 responses.
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.
We can look at people's experiences, Addenbrooke's or UCLA or Imperial or wherever.
We can also start to break it down by age group, which will be important in the second.
And these results are really embedded into the way services are assessed and regulated.
So Siekierski make extensive use of performance, assessment and regulation, and they're also available quite openly for secondary analysis.
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
freely accessible and it's kind of raw format throughout all of the surveys that we do.
We like to look at the demographic trends and the underlying differences in populations to try and
find out what drives good experience and what factors are associated with better or worse care.
Consistently, we find that people over 65 report higher, a higher satisfaction, better experiences and better care in a range of settings.
No Sepultura in our surveys and internationally it's very widely observed.
And in fact, in England we also find that older people report better experiences of just about all public services.
So simply not. Why is that?
The common assumption is that it's about lower expectations, that older people are thankful for what they get, aren't demanding of more,
or sometimes there's a generational idea that they're the oldest people in society have lived
through harder times and therefore that they're just happy to be getting any care at all.
Newer work suggests that's probably not true,
and intuitively it doesn't fit with the kind of personal experiences one encounters from older people anyway.
So new research has found that older people actually have higher expectations of care or higher realistic expectations.
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.
So does that constitute a gratitude by so I don't think it does.
Does it constitute genuine differences in the quality of care? I think it might be difficult and also the other confounding factors.
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.
There will be a lot of confounding factors such as ethnicity, wealth, health status and so on, and all of those good influences.
But this overall pattern is clear and consistent.
And to illustrate it in the context of the National Community Mental Health Survey, this is data from a survey we conducted last year.
This is based on 13000 responses. And this shows how, as your age increases, your mean score for an overall rating, question changes.
Now, this is a simple nauts ratings. People had an 11 point scale right there, Carol, is very, very crude measure.
It's not the kind that would normally recommend, but it's a good introduction to the topic.
And what you can see quite clearly is that in the younger age groups, the survey starts at age 18,
up to say about 50 or 40 or 50 people report quite a poor experience.
Again, average in school, just over six. By the time you've got up to 65, 70, it's getting much higher.
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,
because we're dealing with smaller numbers of respondents were dealing with a smaller population and community mental health.
Um, that trend persists when you look at more specific questions about particular areas of experience that are
related to the things that older people tell us they want most about health and social care services.
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.
So greater than 80. You can see a very similar trend.
And all of them are the text is probably too small and too tilted to read.
So I'll point out the top left one is I do get seen enough.
You need to have enough contact with the mental health service on about or you give me enough time to the.
Gus, law needs and treatment in the bottom corner here,
this one is about being involved in deciding what treatments or therapies you use and receive
and the final one in the bottom right is about being supported to take part in local activities.
So very directly,
this address is that priority around social interaction and community engagement very directly addresses that question about involvement in decisions,
very directly addresses that question about getting the right services at the right time.
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.
You get a bit older, but it was a clear pattern. In fact, we have 33 evaluative questions on that survey.
Out of them, people over 65 give significantly more positive responses than their younger peers on 27 items.
There are only two items where all the people report less positive experiences.
And those are these ones about agreeing what kind of care you will receive and about
knowing who to contact if you have a crisis out about what can we take from this?
Superficially, the suggestion is that older people have a fantastic experience of the report better care than younger people.
They are therefore more happy with the services they receive.
Um, I think actually it's a lot more complicated that I think in all of these, with the big scope for improvement,
big gaps away from the top of these charts we looking at people are reporting a better experience,
but still reporting an experience that could be significantly better.
Um, we also need to be careful about, I think, inherent response characteristics and traits.
And that is the thing that we can't adequately account for unless to what extent do the way
people choose to respond to questions about how they receive can influence the outcomes?
And one possibility that I think it's really important to be mindful of as a provider of care, therefore,
is that some people from certain demographic groups are more likely to acquiesce to questions about the candidacy.
And that could be both in the context of the survey, but also in context of face to face provision.
So when you're providing care, be conscious that some people might say yes and might report.
But the experience is what they want for reasons other than the quality of care is actually meeting their expectations.
And I think that's a really important thing that actually all audiences, um, so I'll wrap up slightly over time.
And what I hope I've got across is that I think user experience is one component of health care
quality and a really good way of measuring the person centred is that that kind of individualised,
personalised element of care is not the only measure of care quality.
And it would be it would be foolish for me to argue that we could stop measuring patient safety or
clinical effectiveness or service expenditure or other indicators of health care quality and efficiency.
I think we need to match them all and look at them holistically.
Um, I think this fits very tightly to the development of integrated care in the ageing population,
because what we hear consistently from older people and about older people is
that this is a group who care coordination in the sense of person centred,
coordinated care is really particularly important. And we have to do it right to do that.
We have challenges. We're going to need to find better ways of looking at how people are handed
off between services and how people experience things in their own pathways.
A limitation to the kind of service I've described is that they are quite provider centric.
And in the future,
challenge to those services is to look more at the patient journey and follow the individuals better and those various bits of work.
And the way to start doing that, I hope that I mean,
in the features that will have better data about how people receive coordination between arranged services,
and I hope that information will be useful for improving the quality of care. And I leave you there.
Thank you. Thank you very much.
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.
Do you take any measures to try and increase the response rates you get from
vulnerable older people that just might see with depression or with dementia?
You might not want to play that, but yeah, that's a good question.
So across all sectors, what we tend to find is older people are more likely to respond.
In general, I'm not. The older you get up to a point, the more the greater your propensity to respond is.
Again, that drops off once you get into the very old age groups, around 80.
The mechanisms we use in national service to try and address this is to encourage people to provide proxy responses or to assist.
So if people are unable to complete a survey on their own, they're invited to complete it with a friend or family member.
And let's go through the questions of them and be supportive.
Now, that is probably an imperfect word to me, because it means we lose the directness of the experience.
And, you know, we're relying on assistance from getting someone's own viewpoint of the problem.
And it does have problems of how you interpret the data,
because we also find out what properties are used and reports of the quality of care are much poorer,
even after you take into account all other demographic factors.
That could even mean that people who respond for someone else are more critical about that care.
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
they care has been poor for some reason or the ones who are using a proxy.
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.
That's why I would say it's not the best place to get user experience information in general.
Is that the point of care? And for all the people who engage with all the psychology,
I think I'm trying to find out through those encounters what the experience is like is the best way to do it.
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.
And if you have any sort of general career questions, then that will be a seminar one.
So that's on the ground floor and the Alafia will all be.
So if you have any questions about the.