'Beyond Bricks and Mortar - Building Quality Clinical Cancer Services' Symposium 2011

Models of Care & Regional Cancer Services - Dr Stephen Vaughan

Up to Radiation Oncology

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Director, Grampians Integrated Cancer Service

Introduction by Norman Swan:

Now to get a bit more experience from models of care at regional cancer centres, Stephen Vaughan has kindly agreed to present to us. Stephen is a haematologist/oncologist. He works in a variety of locations throughout Australia, and at the moment is part time Director of the Grampians Integrated Cancer Services. Please welcome Stephen.

Dr Stephen Vaughan:

Thank you for the opportunity of talking. I have had to change my old presentation to stop awkward questions from Mr Swan at the end. Can we have the first slide please? I don’t think that’s it for me. Do I do this? What happened?

I am a medical oncologist in the company of the sworn enemy, mostly the radiation oncologists, and I will talk a bit about that relationship, because, if you are going to have integrated cancer services, they are the two key specialities, and there are a range of reasons why they sometimes have difficulty working together. I’m struggling with the technology. I will just talk a little bit about my experience, and how it’s informed my views.

The principles I take to looking at health care intervention in particular, organisational change, the published literature and its limitations, some issues about regions, modalities of treatment, what I call the centre effect, models of care, legacy issues and just to finish, to tell you that context is everything. Clinically, I have mostly worked as a medical oncologist and haematologist for the last 12 years as a locum, and I have probably worked in about 20 practices or centres over Australia, New South Wales, Victoria, mostly regional. I have sat on several health care boards. I decided about 10 years ago that doctors were the problem in the health care system, and I’d better get out and try something else. And you never know, if you’ve been in an industry all your life, whether you’re the problem or the solution. Having come back from Water for about 10 years, chairing water authorities, I’m still not sure.

I’ve had a lot to do with regulators, both accounting type ones, financial, health and environmental, Federal and State governments. I’ve done lots of medico-legal work, both single cases and class actions, and my current job is to try and bring all of that experience to try and make cancer services work better.

This is just a couple of what I call principle slides. In case you haven’t noticed, the country to which we look to, the two counties, the US and the UK, have run out of money. Mr Swan says we’re not going to run out of money. We are going to run out of money, and in all the presentations at conferences like this, we’ve got to start talking about money. How much things cost. Quality is not some absolute costless quantity. It costs money, and we’ve got to decide which of the things we do that are cost effective. So, in looking at health services, we’ve got to talk about three things, volume, cost and quality, and all those things inter-relate. If you spend a lot of money on quality, it costs more and your volume drops. If you have got a service area that you have to service, you have to make approximations.
The quality argument is carried out as though it is some absolute dimension which we couldn’t change, and we keep aspiring to it. In the safety literature, they have a thing called ALARP, which is “as low as reasonably possible”. When need to start thinking about quality in a relative context because it is almost certain that in five to ten years’ time, there will be no growth in health, probably for another five or ten years, in terms of resources. And, if we don’t impose the cost restrictions on our business and tell the people who provide the money what works well and what doesn’t, it will be done for us.

Perspectives, the clinical perspective, what is best for the patient?; the operational perspective, how does it service work?; and the exponential perspective, that is what the patient things of the service. And we’ve had presentations touching on all those issues. Health is complex. It is a complex system. Most medical people come from an environment where the gold standard for evidence is the double blind, cross over clinical trial, where you have got one variable, and you come to a clear conclusion. Organisation change, or interventions in organisation will never have a clean answer.

So, looking for clean evidence is never going to happen, and that is what we need to understand, because they are complex systems, for all the reasons that you are familiar. The people that work in complex systems have multiple dependencies, to government, professional colleges, to colleagues, the patients they are looking after, and interventions in one have consequences for everything else. So, if we think we are going to get evidence for organisational change, we are never going to get clear evidence.

Firstly, we start out with a totally different context where we all work. There is an existing system, the legacy issues, the resource issues. Somehow, you have to assess the success of organisational change on global metrics. Probably feeling good about it is not enough. There has to be something, but there are not going to be clean answers as to how you set up a cancer centre in Tamworth, is the same way you set one up in Geelong or somewhere else. The importance of legacy and context is critical.

In my experience, metropolitan, regional and rural, if you live in Western Australia, rural means 2,000 kilometres. In Victoria, no single patient is more than an hour and a half from a chemotherapy centre. So, you come from lots of different States, these words mean very different things in each State. In some sense, Victoria hasn’t got any remote centres. What is the remotest town in Victoria for health care? Apollo Bay, because the road is windy. Health is not the only issue. If you’re trying to get two towns to work together, say in the Latrobe Valley, Moreland, there are lots of things that goes on between regional cities.

There is competition for education, funding, roads, and when you think you can ride and talk about "Let’s have a rational discussion about health", these regional cities bring lots of other issues to them. It is much easier if there is a dominant town in a region, as opposed to lots of small towns. Distance, we talked before about what words metropolitan, rural and regional mean in different States, and we have all these sorts of relationship terms for the relationship between the regional centre and the metro centre. A very common one was hub and spoke. Most regional centres felt they’d been spoked. MRU’s, contracts, in some States, and this is this big variation in New South Wales, Tasmania. The public service mostly tells the hospitals what to do. In Victoria, they do what they like, hospitals mostly, and that’s a long tradition.

Informed networks. You refer somebody to another hospital mostly because you went through medical school with somebody you know, or your wives play tennis together. That’s now it works. Informal networks are really important. Probably the best word out of all those relationship type issues, if you assume that a regional cancer centre doesn’t do everything, it must have a relationship to some bigger centre, we really need to get serious about defining the relationships. These are things that might not have necessarily be seen in a medical talk, and this is the introduction as to why radiation oncologists and medical oncologists are different. Radiotherapy is high capex, 30 to 40 million dollars for a centre. Medical oncology is low capex, high recurrent expenditure, or opex. Radiation therapists are largely used to functioning in an organisational context, 40, 50, 100 people. Most medical oncologists have difficulty managing their secretary. Remuneration differs. A lot of the medical – whether you are in the public or private sector, it differs.

For those of you have recently been involved in trying to decide whether some smaller Australian cities should have a radiotherapy unit, you know the symbolic value of a radiotherapy unit, and the process by which a community thinks if we don’t have a radiotherapy unit, we don’t have a cancer service. Now, I know medical oncology is much more important, and we just slide in and provide the service without any fanfare, because it’s very low capex, but – I will anticipate your question, the drugs do cost quite a lot.

And, organisations, what organisations do people come from? The surgeons of course, almost all the VMO’s, and trying to get them to function as organisation man, has a lot of difficulties. It is very important in your training as a Registrar, where you train, what sort of context. What is a centre? A centre is not a building, a centre is a group of people who work together. I’ve been involved in several places where radiotherapy and medical oncology were put together. They had separate tea rooms, separate floors, separate entrances. It wasn’t a centre. It was just the co-location of two existing services. A centre has go to mean something, other than a bright, shiny building, and you need integration of both the clinical level, between treatment modalities and preferably you would need integration, which the research services. so they end up asking the right questions, there should be joint management, there should be some integration of the clinical processes, and I just make the observation that although physical visibility is important to say that’s the cancer centre, that really means nothing functionally, unless you do all of the things that people have touched on today.

The point I would make, if you invest a lot in a cancer centre, they are comfortable places to work, because they have got everything. I have a view that the more you invest in cancer services, the less you will invest in outreach services, and if you look at most cancer policies around the country, around the world even, we have this policy, and we do in Victoria, about providing services as close to home as possible, and building massive, shiny centres really runs the risk of saying “Well, the patients have got to come to us and we provide the service to them”. So, the centre effect is not entirely positive.

This is just a diagram to try and explain how to deal with doctors. Now, that little acronym in the previous slide was DEPE, “Dollars, Ego, Empire and Parking”. Parking should be first - that's not right. When you’re trying to deal with doctors, the single strongest affiliation, and this is one of those horrible generalisations, it may be less true of radiation oncologists than some of my surgical and medical – the primary affiliation of most specialist doctors is to their craft group. If you want something done, you go to the craft group. Most of them are successful in this State, say in cardiac thoracic surgery. The cardio thoracic surgeons set it all up themselves 15 years ago. The renal physicians set up systems for monitoring dialysis, transplant and in stage renal disease, 25 years ago. And, it was all done through craft groups with minimum or limited organisational input, or Health Department input.
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Many doctors, that is their primary loyalty, and that is either in the private or public sector. The public sector and private sector, the thickness of the lines represent the strength of the affiliation, and I am going to touch later on, a bit about public and private medicine, and how it affects your objective in trying to create a cancer centre in a town. The idea of a centre is that medicine mostly these days, specialist medicine in cancer, is sequential. You see your GP, your surgeon, your radiation oncologist, your medical oncologist. They may or may not have a meeting to talk about it, and then you come to some joint treatment plan.

The process that you might – at that sequential end, you might plan in a centre to have some synchronically based care, where you go in and the doctors are all there, and the patients rotate. Or the doctors are the ones that will come. Like, in a lot of American centres, you go to a clinic where all the doctors are. It is a single visit for the patient, and then all the doctors are on the site.

I will just make the observation that that sort of stuff is poisonously expensive. So, you have got to decide where you are. We all agree probably, there are limitations in sequential care, but as you go across that spectrum, the costs increase dramatically. And, at some level, there will be a break even point where the initial investment in cost leads to some identifiable quality outcome and you can say that it’s worthwhile.

Hospitals differ in the way they are run, and if you are going to have a centre in a hospital, some centres are relatively autonomous. Some centres, the chief executive of the hospital thinks he owns them and wants to know what the colour of the drapes are in the waiting room. Hospital structures differ enormously. Basically, to be successful as a centre within a hospital, if that is where it is, a centre has to operate in at least a network stage.

Now, model of care. What does it mean? It’s the clinical – it is the how you deliver care. You could start there with some principles, patient centres, equal access, co-ordinated and quality. And then we could talk about enablers of model of care, governance funding, IT, work force, research and training. I have spent a quarter of my life, in the last ten years, dinking around with health IT. I am a very disappointed person. And look, I don’t want to spend the whole session talking about my disappointment about health IT, but when those people at that national organisation start talking about a personally controlled medical record, they are certifiably delusional. None of you here, are there?

Legacy issues. You rarely have the opportunity of plonking a new centre in a green fill site where there are no services. There is always some person who has been saving lives there for several years. And, it is a person – it might be existing resources, it might be an existing model of care, it might be you are putting a private resource into a public sector environment, or a private. So, legacy issues are always the difficult things, and they are the things that sort of make all our plans.

Now, this complicated slide, which you are only meant to read the coloured bit down the – there is a woman named Trisha Greenlaw, who visits Australia regularly. She is a health theorist, organisational change person. She has written a very dense book, and when I say dense, difficult, but it is worth reading carefully. And one of the great advantages of what she writes, it is mercifully free of management jargon. It just tells you what to do. Get people to talk to each other. She talks like that, and her presentations are excellent. This is one of three slides talking about the sorts of things you have to do to get care co-ordinated, and establishing boundary roles is really important. Typically, if you have got a Radiotherapy and a Medical Oncology Department, you have to have boundary roles. It is probably not the best thing to make, that the director of both of them to start. Boundary roles need to be through the system. It might be people further down the line.

You need to develop shared guidelines and protocols like radiotherapy, chemotherapy protocols. They need to be developed and different stuff like that. You need to have IT systems that are joint. And, if you look at more recently, MOSAIQ an area out of Elekta and Varian recently had the opportunity to look. That has to be the future of oncology IT, not specifically oncology products like CHARM or others. You really need to start with as much joint IT as you can.

And developing networks and supporting. Now, this is a series of slides, but I have to have one slide on IT. I have spent a lot of time talking to vendors. They have the solution, then they ask you what the problem is. Health is complicated, but they all think we’re self-serving when we say that, and to some extent, we are. Health is more than evidence based medicine and clinical practice guidelines. There is some group of people think that evidence ...on a good day, in practice, I do, 25% of the decisions I make, are evidence based. The rest of the time, I am exercising professional judgment, mostly extrapolating the evidence well beyond what it is, and I don’t think that is every going to get much better. There is lots of evidence what you do with cancer patients when you first see them, but when they relapse the second, third, fourth, fifth, sixth time, and there are now drugs where patients with breast cancer might go for ten or 15 years with lymphoma, there ain’t no evidence at the third relapse, so what do you rely on? What we’ve always relied on.

So, this concept that evidence based medicine is going to be something magical is pie – it is very useful up front, but it becomes less useful as things go on. I will just keep on. I have a particular interest in business processes. Mostly in medicine, we talk about data bases and everybody has got their own data base and data set. Really, what we should be thinking about is what is the process by which we care for patients, and what stage of that process do we want data from somewhere else and what stage to we generate data. So, business process or clinical process is the primary thing we should be thinking about.

That is another one of Greenlaw’s slides of the three, and that is about using evidence. And, just remember evidence is not just what you read in the medical and scientific literature, it is evidence about your own performance, audit. You know, you have treated so many patients with such and such, you have such toxicity, etcetera, etcetera. That evidence is probably more impactful upon what you do, rather than what has been published in the literature. And, that is the final thing. And this – to touch on an earlier presentation, we have only just skimmed the surface of consumer engagement. Consumer is a very bad word. It has commercial over tones and it has passive over tones. In our group, we always use the word “advocate”. We never use the word “consumer”. And since we have just changed the name, we get much better engagement, and we get people who are more active, and more opinionated about what should happen. And that is just using a different word, but the ultimate driver of a system should not be what us professionals think, it should be what an informed advocate thinks.

And we might argue about that, but professionally driven systems – and we have just got to set up systems where we get people to advocate and we give them the basic mechanics of the decision, but the value judgments about what is important, that has to be an advocate driven thing, not a professional driven thing. And if you ask patients the sorts of things they want, speaking to them not so much, but listening to them, and I guess Chris’ point earlier on about taping conversations I think, is a good idea, but I have always had the view it is not really important what you say, it is what is understood. In medico-legal stuff, often the case is the doctor said something, the patient said he didn’t. He probably did, but it wasn’t understood.

So, talking to patients, what is understood is important, not what you said. And that is something that we need to have special questions at the end of consultations. I personally get patients to explain back to me what the situation is, and three quarters of the time, they get it badly wrong. And then we go through it again. It is an iterative process.

Public and private. Nobody talks about this much, it is a mess. A real mess, and the dual funding of our system, which they are sort of moving towards fixing in some way, but it corrodes everything. And the trouble is, nobody really knows what it means anymore. I don’t think very pure private practice and very pure public practice don’t exist anymore, so we have got all sorts of hybrids. Is it the facility ownership? Is it how you pay doctors? A lot of people think that. I do public practice when I am paid fee for service. What is that? Who knows. Having worked in lots of places all over Australia, I have seen every single combination. Who pays is important, if the patient pays, Medicare, health fund, government, State, who? It doesn’t matter who pays really. Out of episode care. You see a patient, who is responsible for that patient’s care for the thing you are seeing about, for 24/7 for the next year? In the public sector it is the organisation, and in the private sector it is usually the practitioner. That is quite a big difference, and patients usually think that is important.

Patients' expectations. They have different expectations of the public and private system. The biggest problem in health is patients’ expectations are not high enough. Lousy service, they expect it. They don’t complain. We need to do a lot of work on something like a patients’ charter. What is reasonable to expect? Because mostly patients’ expectations are too low. When we meet those expectations, we think it is okay.

Which is better, public or private? The Productivity Commission did a massive report last year. Bottom line, the data is lousy, you can’t tell. Each person takes out of those complex reports without clear conclusions, their own conclusions. There is a little bit in there about the private sector might be a bit better, and there is a little bit in there about the public sector might be better. So, people take from it. Our data globally, we do little studies of you know, 100 patients. Our data about the global performance of the system is non-existent. And when you try and answer a question like that, there is no answer. Most people how have strong views have never worked in the other system.

The argument is largely counter productive, there is negatively mutually reinforcing stereotypes. There are attributions about individual motivation. The observation: you can never know why people do things. They are unknowable. You can’t modify them, and I only really care about performance. Who knows what people think or why they do it. In my view, the systemic risk to the private sector is over servicing and the systemic risk to the public sector is low productivity. That means the way the systems are structured, they are the risks. Whether they occur in a system depends what risk mitigation you have in place to control them, and I think they are the systematic risks and you probably look for some compound thing. The systems differ. The public sector is riddled with perverse incentives, like trying to fund outreach and other things.

Last line, I like this line, and I have just recently seen it. This bit here, this is some measure of system performance. These two horizontal axes are some measure of health performance, some measure of your resources maybe. And this is the typography, and it is a matter of valleys and hills. Wherever you’re trying to change health care reform, you are going to go up to some peak, good performance. But sometimes you have to go through a valley. I just reflected how much of my medical life has been spent in the valleys versus the peaks, and I would like to think I spent a fair amount in the foot hills. I don’t think I have been at the peak very often, but that is what you are aiming for, some peak on some performance issue.

But the point here is about organisational change, difficult to measure, multiple variables, and if you really make big organisational change, almost certainly, in the short term, there is some decrement in performance, and you have got to have people leading organisational change with vision to see where it’s going and get you through that awkward bit. Thank you.
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Norman Swan:

We will still take questions, we're running a little bit late, but there is a lot of wisdom there in Stephen’s presentation. So, come to the microphones and we will go through things fairly quickly, if you have comments or questions to ask. My question is, in terms of solutions and moving forward, a lot of barriers were stated there, but in terms of – Tony and Kate talked about the importance of principles and getting people to agree to it, and you alluded to that as well. The principles that you stated are ones which people can sign up to very easily, and some people say that if you can sign up to principles really easily, they’re not worth anything. They have got to be actually tough minded, constraining, box people in, so they know what the expectations are, the real boundaries in many ways that people are talking about. What is your position on that, because you quoted principles that look easy to agree to?

Dr Stephen Vaughan:

It's like the motherhood principle. I think the issue is when you are trying to get people to change, you have got to think that everybody loses. People mostly resist change because they think they are losing something, and it may well be in the short term. In particular, you're trying to put an IT system in and the doctors says “Well, that’s going to take longer than the consultation, I’m not going to do it”.

So, what you have got to do is what I call surface losses, when you want organisational change. Yes, it will take you longer, but three, six, 12 months later, you will get some return, or in the short term, you might be able to get a return. So trying to pretend that organisational change is painless and there are not losses, people just don’t believe it, and they are right. So, I think – my view is if you are going to do organisational change, you have got to do what I call surface losses. Tell people“Yes, it is going to be harder, and you are going to have to do something else, but you will either get a better outcome, or at some future time, it will be faster”. And IT is a very good example of that. I think that is one of the things that you do.

The second thing is that in health in particular, say in cancer, you have got to deal with a VMO surgeon, who you have got very limited control over in terms of their incentives or their rewards. VMO or sessional medical oncologist, and maybe a staff radiotherapist. All those people are very different in how they have control, and also their colleges are quite different. You take the College of Obstetrics and Gynaecology, it is run on Stalinist lines. They all do what they are told, and their quality is terrific. And that is a tradition, whereas with physicians, it is much more relaxed and they don’t insist on a great deal. So the colleges have cultures, and when you are dealing with individuals, you have got to know where they come from.

One of the things I always like to do is, I try and align what the organisation wants with the CME of their college. So, if the college says you must do a quality assurance project, well you try to make that part of their work. So they are the sorts of things.

Norman Swan:

Thank you very much Stephen, fascinating.
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