Episode 42: The Value Proposition- Disruption Part 1
Episode 42: The Value Proposition- Disruption Part 1
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Fellows of the RACP can claim CPD credits via MyCPD for listening to this episode and reading the resources below.
This podcast and episode 43 revisit the theme of ‘disruption’ from the 2018 RACP Congress. Disruption is what happened to the taxi industry at the hands of Google Maps and Uber. Or to the music industry with the onslaught mp3 files and digital sharing platforms.
Democratizing technology is changing delivery of healthcare too and now permits remote consultations, automated dispensing, or even algorithmic diagnostics. The public also has access to more information, and even today, “Dr Google” is variously described as a tool or a hindrance.
More importantly, consumer expectations are different to what they were twenty years ago. As Professor Des Gorman explains, the health system is a service industry like any other, and those working within it need to have a better understanding of the people who sustain that service. New delivery models are springing up all the time which may offer efficiencies and greater satisfaction in some consumer groups.
Consumer advocate, Jen Morris, tells a story from the UK, where a man was able to bypass red tape around approval of prophylactic HIV therapy simply by setting up a website. She explains how clinicians shouldn’t see the internet as a threat, but as a tool for enhancing consumer engagement. And how health literacy is more about navigating systems than it is about understanding biomedical fundamentals.
Professor Des Gorman FAFOEM (University of Auckland; Executive Chair, Health Workforce New Zealand), Jen Morris
Written and produced by Mic Cavazzini. Recording assistance in Auckland from Richard Smith and the University of Auckland, and in Melbourne from John Tjiha of Paper Radio.
Music under licence from Epidemic Sound (‘Simmering Anxiety’ by Christian Andersen, ‘Into the Bone’ and ‘Frustration in Disguise’ by Jimmy Wahlsteen, ‘The Sky Changes 2’ and ‘Calculate Journey’ by Gunnar Johnsén ); and Free Music Archive (‘To be Decided’ by Mystery Mammal, ‘Highway to the Stars’ by Kai Engel and ‘Waiting’ by David Szesztay). Image under licence from iStock. Executive producer Anne Fredrickson.
Editorial feedback for this episode was provided by RACP Fellows Paul Jauncey, Michael Herd, Mahesh Dhakal, Rhiannon Mellor, Ellen Taylor, Joseph, Lee, Philip Britton, Alan Ngo, Rachel Williams, Phillipa Wormald, Rosalynn Pszczola, Richard Doherty
Citizens, consumers or patients: what’s in a name? [IMJ]
Purchasing better, innovative and integrated health services [IMJ]
Reforming primary healthcare [J PRIM HEALTH CARE]
Looking to tomorrow’s healthcare today: a participatory health perspective [IMJ]
Health Reimagined: A New Participatory Health Paradigm [EY]
Mobile health: an emerging technology with implications for global internal medicine [IMJ]
Wearable Devices as Facilitators, Not Drivers, of Health Behavior Change [JAMA]
Will the Internet of Things Transform Healthcare? [JET Law]
The rise of consumer health wearables: promises and barriers [PLoS medicine]
The HIV-positive man who stopped thousands getting the virus [BBC]
Birth control app reported to Swedish officials after 37 unwanted pregnancies [the Guardian]
Evidence standards framework for digital health technologies [NICE]
The Wireless Future of Medicine [Eric Topol, TED]
Meet e-Patient Dave [TED]
Doctors sound warning over online patient reviews [ABC]
Communicating Medicine through Social Media [PediaCast CME]
MIC CAVAZZINI: You’re listening to Pomegranate Health. A podcast for physicians of the RACP.
DES GORMAN: When I graduated from medicine in 1977, I arrived in Heathrow the following year, and I got a taxi from Heathrow to the hotel, and it was very clear to me what the value proposition was for me in regards to the taxi driver; he knew how to get there. He had the knowledge. In fact, he passed an exam called The Knowledge.
MIC CAVAZZINI: That's Professor Des Gorman of Health Workforce NZ and the University of Auckland, in his presentation to the 2018 RACP Congress.
DES GORMAN: I arrived there two weeks ago. My phone had better road intelligence than he did. I knew where the congestion was, I knew where the road works were, I knew where the road traffic accidents were. What was I paying for? What was the value proposition? The value proposition no longer exists as it did. All he did was drive the taxi. Now, in 10 years time or 5 years time when we go to the autonomous taxi, there won’t be a value proposition for that taxi driver because, frankly, I won’t need him.
MIC CAVAZZINI: The theme of that Congress in May was "Disruption." Disruption is what happened to journalism when all the advertising revenue and content went to social media, or to the music industry with the onslaught mp3 files and digital sharing platforms. Could it happen to healthcare too?
DES GORMAN: When I graduated in 1977, the consultative era of medicine – someone came to me with a complaint, and I used the Knowledge to solve the complaint, to provide an explanation for the complaint, and maybe to provide a way in which the complaint could be managed. The value proposition was explicit. But now, we have Google Maps, and we have participatory health care, and the same question is, what is the value proposition for healthcare providers when we no longer own the intelligence. When the intelligence is immediately available and accessible to every single person that walks in the door.
There’s lots of technology to replace us, so we wouldn’t want to be too complacent. In the context of the time and the cost to employ me, 15 years and about one million dollars added up, what value would doctors add as virtual mechanisms become more comprehensive, more accessible and designed for self-interpretation and self-management. What value will doctors add in the milieu of purpose-trained technicians and as robotics become cheaper and more dextrous.
In fact, you need to ask this question, are there some health professions that are at risk of being disrupted than others. For example, it’s hard to imagine when I’m sick that I won’t want a person to hold my hand, but already I can get a robot to do everything that a retail pharmacist does. So in fact, the question is, where does the medical profession sit in the context of this vulnerability? Let me tell you we’re profoundly more vulnerable than nurses and midwives.
MIC CAVAZZINI: I’m Mic Cavazzini, and over two episodes I’m going to look at some of the forces shaping medical practice today. With Google and wearable devices, consumers have more information than ever at their fingertips- and greater expectations about participating in decision-making.
We’ll hear about some alternative models of health delivery, and about helping patients navigate the choices before them. In the next episode we’ll also hear from some consumers about how they see the existing power structures, and what words like patient and consumer mean to them.
This is a really broad conversation—not a documentary or a manifesto. Some of the details will have to be explored in future episodes. First, let’s go back to Des Gorman, who I interviewed a few months after his provocative seminar.
DES GORMAN: The interesting thing about the RACP session for me was that people came to me afterwards and said how provocative and radical my perspective was. And I found that particularly amusing, because to argue that health is a service industry and we should understand who we serve and what their expectations are, I would have thought is not provocative whatsoever.
So from a value proposition point of view, if I’m to be an information broker as compared to the knower of all things I need a range of different skills- I need to understand their coping strategy, what’s their illness perceptions, what are their sickness beliefs? As a medical academic I thought even further still – and thought, “Well, am I guilty exactly as are the trainers of London taxi drivers of preparing people for an era that no longer exists.”
MIC CAVAZZINI: And how clear is the curriculum of the future to you? In one of your articles you write that desirable healthcare requires a range of health psychology skills which are notably not the core domains of conventional and medical information. Elsewhere, you’ve compared medicine to a service industry, what are the skills required in that context?
DES GORMAN: If we align ourselves with other service industries, the starting point is an intimate knowledge of what people who are going to use that service expect, need and want and are prepared to pay for either directly or indirectly through taxation. But no service industry would survive for long without an explicit knowledge of user requirements and user expectations. And I would suggest to you that most health systems would have no idea what their users require and expect.
What happens now when people come to see me? Well, generally they know more about the health condition than I do. They’re certainly better versed in it in terms of their own experience than I am. And so what’s my value proposition? If you come to see me and you have a particular health problem, one of the first things I have to do is to work out whether your approach to healthcare is to want to know everything possible about it – in other words, you’re a monitor – or your predominant coping strategy is to blunt. In other words, you say, “Hang on, Des, don’t give me all that. Just reassure me you know what’s going on and that it’s going to be okay.”
I need to understand your sickness perception. For example, if every experience you’ve had of someone having breast cancer is that they die within six months, there’s no point in engaging in a conversation with you about breast cancer which does not directly address that sickness belief or that illness perception. So information brokerage requires the ability to determine the sort of coping strategy the person has in front of you, what their sickness beliefs are and what their illness perceptions are.
Those are some very sophisticated communication skills, because if you get it wrong you will cause profound distress, and they’re unlikely to take your advice seriously about which choices available to them might have the greatest utility to them. So the physician of the future has to develop a range of communication abilities and health psychology insights which, historically we’ve never prepared them for.
MIC CAVAZZINI: Another call-to-arms at Congress came from Jen Morris. For almost a decade, she’s been championing the inclusion of community voices on hospital boards, research bodies and other committees. Here she tells the story of Greg Owen, who in 2015 found a way to disrupt the red tape required for approval of HIV prophylactic drugs by the UK health service.
JEN MORRIS: Yeah, so Greg Owen’s a great example of just deciding the problem can’t wait so I’ll do what I can to solve it. Greg was a British man living in the UK at the time of these events, who was a sex worker, who was homeless and a gay man. He was starting to become aware from whispers out in the community that – what we would now call PrEP - preventative treatment to prevent HIV – was being trialed and he wanted to be part of that trial because he was very well aware how risky his situation was, and he wanted to do the responsible thing.
Unfortunately for him, he was not able to make it on that trial and so he didn’t get access to PrEP in its trial stage. And the TGA in the US had approved it, and he wanted to get access to it and was desperately, desperately, desperately trying to get access to it—was unsuccessful in doing so because the NHS was dithering over various questions about getting it in, how they were going to do it and whether it should be done. And he then subsequently was tested and found out that he had HIV and was obviously devastated that this opportunity to prevent it had been missed while the NHS was trying to get their act together.
So he basically decided that he was going to leapfrog all of that bureaucracy and find a way to help people get access to PrEP. He did a lot of research and found that there was a legal way to buy it online from a supplier overseas. Obviously, it wouldn’t be government-funded but it was possible to do it, and you could buy it for a whole lot less than you could if you tried to do it through UK systems.
He setup a website to direct people to where they could access it, called “I want PrEP now”. And he got the tablets tested properly to check it was all legitimate, that they were uncontaminated—it was all above board and they were real—and facilitated access to that drug in that time for thousands and thousands of people in the UK and, for that matter, elsewhere. And in the time period that he was doing that, the incidence of new diagnoses of HIV in the UK dropped by 30 percent- and in a particular sexual health centre in London dropped by 40 percent. We can’t be 100 percent certain, of course, how many factors were involved in that, but it is a striking reduction in that time period.
Subsequently, there have been changes to access to PrEP, but, really, what he did was prevent thousands of people, potentially, from being infected with HIV, now and in the future, by just deciding that he wasn’t going to wait, by using his kitchen table and a laptop, essentially, to direct people to where they needed to go. He made no money out of it, there was none of that, he just felt so passionate about, “We can’t wait and these young people’s lives can’t wait,” that that was what he decided to do.
MIC CAVAZZINI: That’s a really good example of digital disruption. It’s also an elegant example in the sense that there’s no question about the medical benefits of this intervention, but there’s a whole bureaucracy behind that. I sort of want to delve into that a little bit – perhaps, playing devil’s advocate to see which of these barriers can come down.
So the cost of the drug varies hugely from country to country. In the UK and the US, the name brand costs, at least, 1800 dollars Australian per month wholesale. And the drug’s developer had a patent and an IP that excluded local competition from generics in those states. Although, in Canada, you could get the generic drug for about 600 dollars since August 2017. This all sounds very unfair, but there are defensible reasons why IP should be protected. I mean, these companies wouldn’t invest in research at all if they couldn’t make some money off the one in twenty drugs that actually make it to market.
JEN MORRIS: Yes, I do understand, of course, that there needs to be a financial incentive for private organisations to develop products for medical markets – whether they be drugs or devices or anything else – and we know that you could write a thesis about that. But I think what Greg’s generic point might be underneath the complexities of that particular story, I guess, is about time, and there’s a lot of questions about the both the financial and ethical apsects of granting, essentially, compassionate access to those medications in that time. I don’t have a magic answer for that, but I think what is important is that we, as a society, make sure that as much as is possible we’re involving the community in making those decisions. Not just the patients and the consumers, but all of us, in a sense, have a stake in the way the PBS and other systems operate in this country- we all pay for those.
MIC CAVAZZINI: I guess all I’m saying is that there might be explanations for withholding public funding that aren’t sinister or self-serving – even if the company that makes prep is called Gilead. There was a HIV advocacy charity in the UK that actually brought the case to court. And one argument that was raised against public funding of PREP was that it undermined safe-sex messages. In Australia, PREP is discounted by Medicare, but in a local study published in the Lancet it was shown that over four years this had resulted in decreased use of condoms even among men not on the drug. So public health messaging is a tricky problem that you can’t rush into.
JEN MORRIS: Of course, and I think what I was trying to get across with telling Greg’s story in the limited time that I had – wasn’t even necessarily about the wisdom of what he did or didn’t do, or any of those value-based conclusions. But it’s about the point I was making that he wasn’t going to wait for things to go the way he wanted them to. And I think the lesson there and the lesson in the public health challenges that we face with communication is that maybe if there are reasonable and rational reasons for things which, as you say, most of the time there are—you know people go to work trying to do the right thing on a daily basis, of course—it’s about communicating those in a way that’s understandable and helpful and meaningful and engages the people that need to understand why things are being done the way they are. And an accessible information- there are formal documents that are published that outline the reasons and outline the criteria, and that’s laudable and important that that’s done, but we need to ask ourselves, are there helpful alternative forms in which we could communicate that information.
MIC CAVAZZINI: More and more institutions in health care are formalizing consumer participation. Indeed, Australia’s Pharmaceutical Benefit Advisory Committee has two consumers representatives, and regularly seeks submissions on drug applications from patient groups.
The relationship of patients with the health services is changing all the time as technology and information evolve. For example, implanted glucose or heart rate monitors that talk to your mobile phone and to your physician’s. And there are all sorts of 'wearable' devices widely available that remind you how much exercise to do or when you should take a meal.
Some observers promise that these will put more power in the hands of the public- give them more agency over their own health. The idea was popularised by US cardiologist Eric Topol in his book, "the Patient Will See you Now," and the viral lectures that followed. Let's hear from Des Gorman about some strategic applications of tools that benefits users and providers.
DES GORMAN: The story was, there was a particular Aunty who had unstable diabetes and her daughter became concerned because she kept falling over. By the time they sorted out her insulin dose and got her onto more stable footing – literally – it took the thick end of four months, I think there were four visits to the GP, there was one visit to see a specialist. There were, I think, two or three avoidable hospitalisations because of falls, plus the trip to the pharmacy. So to change an insulin regimen to the point of achieving stability took that time and had that many interventions at that cost.
The alternative story is that she has a wearable and when she falls over the wearable sends out a signal and a district health nurse goes out and sees her, downloads the biometrics from her wearable, uploads it into the cloud to a virtual health team which looks at that information. And over the next 45 minutes, the district health nurse pops next door, talks to the neighbour about what local community resources are available for Aunty. And then she looks through Aunty’s cupboards, they chat about how she prepares her food and how she’s going about shopping and so on. And then the virtual health team comes back with a solution to change her insulin regimen. And an email has already gone off to the pharmacy and the new medicine is on its way out so that the district health nurse can walk Aunty and her daughter through that.
Now, the point is instead of four months and goodness knows how many interventions and how many different places and two hospitalizations, the whole thing is solved in one hour. And the question I pose is, of the technology required to make that second story come true, how much of that technology already exists? And the answer is all of it, and it’s existed for a long period of time. So why isn’t that second story the usual story? The answer is we worry about how we regulate people on a virtual health team, and the third thing is some of the established professions, like, medicine, for example, worry that we may not even be in the virtual health team at all, because we may not add value in a world where algorithms might solve most of those problems.
MIC CAVAZZINI: One of the papers you reference is authored, in part, by one of our fellows, Professor Peter Brooks, at the Melbourne School of Population and Global Health along with some accountants from Ernst & Young. And they modelled the potential effect of fitness trackers in prevention of type-2 diabetes, and predicted that it would help cut prevalence of the disease by one or two percent by the year 2030. Whereas, in the absence of these tools, prevalence would increase by eight to twelve percent. There’s another gee-whiz example that you cite by an organization called Kaiser-Permanente in the US.
DES GORMAN: Kaiser-Permanente is a closed health system which has its own insurance company and its own health provider systems and it has 12 million subscribers. It’s based in northern California, it’s one of the half dozen best health systems in the US. And as their 12 million subscribers were getting older and older, they knew they had to strip some operating costs out. The system was simply too expensive.
When they did surveys of its users, members, subscribers, it got a very clear message, and that was, “Most of my health needs are predictable.” So I have a completely predictable health need with a predictable outcome. I’m having to take a day off work, to drive your building, to park in your car park, to pay a parking fee to see your provider for a completely predictable intervention. They said, “This is ridiculous.” Now, in one year, Mic, they went from 110 million GP visits to 52 percent of those being delivered virtually; email, text, phone message, Facebook, Skype and so on. My view is they’ll eventually end up with 80 percent of all primary care being delivered virtually. Now the subtext then is, well, what do you do with all the doctors who were originally providing the care. And the answer is they add value when disease becomes bio-psychosocially complex and unpredictable. And instead of seeing six people for ten minutes, they may see someone for an hour who genuinely needs that expertise on a face-to-face intervention. So, in fact, what Kaiser has done by virtualising what can be virtualised is freed up resource to add value where, in fact, a virtual mechanism is not appropriate.
MIC CAVAZZINI: You’ve written several articles taking issue with the funding model of health. You take particular issue with the centralized funding and the idea that it’s lumbering, expensive. An alternative model would be disability services in NZ - which sound quite like the NDIS in Australia – which give the individual the resources to spend on the needs that they see fit rather than get the stock treatment from some monolithic provider. So are you imagining this kind of flexibility across the whole health service?
DES GORMAN: Look, I think that’s right. I think, first of all, what health systems have tried to do since Adam is fit a single funding model across all possible health interventions, and that doesn’t make sense. For example, if you have a high utility-intervention, such as a cataract procedure for an otherwise independent, older person, then you don’t need to go to sophisticated commissioning—just piece-work it because there’s high inherent value in the process. But the minute you go into mental health issues or lifestyle diseases like diabetes and obesity, then a fee-for-service or a transactional funding is nuts because all you’re going to get are transactions, and what you really want to achieve is high-value outcomes.
Health care now consumes, what, 40% percent of state budgets, and when you have national health systems like the UK and New Zealand it’s about 20 percent of government spend. At what point do you have to say it’s no longer affordable? Well it’s way past that point already. We already know that in terms of OECD countries, more money does not translate into better health outcomes, we already know that, in the same way we know that more doctors doesn’t. Tax-based health systems only work when you have a large number of fit young people paying taxes relative to the elderly who don’t pay taxes and consume healthcare. So we’re already past the tipping point of affordability- it’s how we public systems learn from groups like Kaiser about how we can innovate in a way which actually increases the net value proposition in the investment society makes in health systems.
MIC CAVAZZINI: Professor Gorman articulated more of this thesis in the discussion at Congress, so I’ll slot that in here before returning to the interview.
DES GORMAN: I actually think that catastrophic healthcare—which is why we need hospitals—does involve a very different model of service delivery than the majority of health needs, but you can’t use the logic which underpins catastrophic healthcare and extrapolate it. And I’m not here to defend the US health system, there’s no such thing. When you evaluate healthcare in the US as a system, it always ends up bottom, cos it’s not a system. But there are systems within it beat the pants off any public health system by a million miles; Kaiser, Partners, Intermountain, Virginia Mason beat the Australian system by a million miles. So no, I wouldn’t disagree with you. I think catastrophic care invokes a very different model than the 99 percent of healthcare which occurs outside of intensive care units.
MIC CAVAZZINI: Your idea is that if consumers are voting with their wallets, let’s say, it holds the health system to account on performance and efficiency, you know, “The market never lies.” But in this free-market health economy where you can pick and choose any services you want, is there a risk that some small groups of patients who don’t have the weight of purchasing power behind them, that their needs go unmet, that that service is not provided?
DES GORMAN: What I’m talking about is not constraining them to a range of existing services. If all you’re doing is giving consumers a menu to choose from, that just encourages providers to continue to offer the same sort of services in the same ways.
MIC CAVAZZINI: One of the concerns that I have is that, sure, you could have virtual consultations, you could have apps to remind you to take your meds. You could imagine, inadvertently, this might distance the relationship between the clinician and the patient. That they might – the clinician might spend less time explaining the discharge package to the patient because the app was going to take care of it all. Just in the same way, in the last decade, there was the problem with the physicians talking to their computer screens instead of looking the patient in the eye.
DES GORMAN: Look, I agree. But, as I pointed out before, we can’t have a one size fits all, Mic. If you’re brave enough to be process agnostic and allow local solutions for local needs you end up with workforce solutions which look nothing like conventional health services. For example, in one region of NZ mental health services for the group we’re looking after are provided by middle aged Māori women that we’ve upskilled because we know young Māori with drug and alcohol issues and mental health issues are deeply, deeply respectful of what they call Aunties- so we’ve mobilized the Aunties. It looks nothing like the mental health services across the road which are still providing conventional services in conventional ways, and I may say, getting conventional results.
MIC CAVAZZINI: I’m just nervous – maybe I sound like a wet blanket – but there are already 350,000 mobile apps out there to inspire your fitness, monitor your health, very few of them have been demonstrated to be that useful. The wearables industry which is reportedly worth $50 billion US a year, but are these things creating more noise than they are creating signal? For example, in the UK, the company Babylon Health was warned by regulators because their app, “GP at Hand”, missed symptoms and had a high rate of false positives.
DES GORMAN: That’s a good question, Mic. First of all, technologies come into the marketplace without regulation as compared to drugs which are heavily regulated. So, you’re quite right. Most of them are useless and most of them are very expensive exercises in uselessness. What we’ve allowed the technologists to dictate how things look rather than use saying, “This is the model of care. This is the technology that we need to enable that model of care.” It is the tail wagging the dog. The second thing is though, Babylon exists because of an unmet need. Babylon exists because the sorts of services people want aren’t being provided to them. So the vast bulk of unmet health need in the European Union is not going to be more vulnerable to more doctors and more money. It’s, in fact, the consumers want healthcare that does not look like – or is not delivered in a way that’s conventionally delivered. So the Babylons and other technologies are growing up in a vacuum created by the inability of conventional health providers to understand what consumers want and provide it in a way which meets that need.
The absolute irony of the disruption we’re seeing is the value proposition healthcare providers bring is, increasingly, their ability to communicate. The whole point of shifting the locus of responsibility takes us from a dictatorial role to a communicative role, and those communication skills are going to be a mainstay of how providers value in the future, which if you like, you can see it as a bit of an irony.
MIC CAVAZZINI: For every clever application of participatory tech, there are other less glittering stories. For example, a birth control app is being reported to Swedish regulators after thirty seven users fell pregnant. In response to such cases, the UK’s National Institute for Health Care and Excellence has just published evidence standards for digital health technologies.
But even without these new apps and devices, there’s Doctor Google. One in twenty internet searches are health-related and former AMA president Dr Bill Boyd has warned that there are dangers to this resource as well as benefits. Dr Boyd told me over a phone call that ‘lay referrals’ from friends and family are nothing new, but with the internet, the scale of this phenomenon is much greater. Every day, healthy women come to his gynaecology clinic alarmed by what they’ve read online—asking for tests and investigations to rule out unlikely conditions. For example, one message trending among his patients is that doctors should be testing for CA 125, a serum protein sometimes associated with ovarian cancer. In reality, the assay isn’t sensitive or specific enough to be used as a screening tool, and would do more harm than good in asymptomatic women.
At a national level, Bill Boyd estimates that unnecessary consults and tests evoked in this way are likely costing tens of millions of dollars. But you can’t uninvent Google, Jen Morris thinks that rather than viewing it as an enemy, physicians can harness this tool to educate patients and galvanise self-care strategies.
JEN MORRIS: That’s where it’s important that, I think, the profession comes to accept that this is the situation we’re in, that the internet does exist and that information is out there. And instead of trying to push back on that and basically say, “Please don’t Google things,” - because that sounds more like a dare than a serious request—instead of pushing back and hoping and wishing we could go back to a time when it’s not the case—so a more helpful response to somebody who is coming in – whether the information they’ve got is good, bad, indifferent, we may not even know at that point- it’s a time for practitioners to take the lead on saying, “Okay. There is garbage out there, but there’s plenty of really solidly good resources out there. I need to learn what those are and actually direct people that way.” People will generally will give serious credence to a practitioner saying to them, “This website, source of information, support group is really great.” Because it respects the intelligence of the adult that you’re talking to if you can approach it that way.
MIC CAVAZZINI: I hate picking up on the semantics all the time, but it does kind of influence the way we think about this. Very often you’ll hear the line about “the patient’s right to choose” – and of course, that’s fundamental. That shouldn’t be interpreted as, “the customer is always right.” Just because there are people who want to self-medicate with cannabis, for example, we have to trust that the system is evidence based and, for the moment, the evidence based only justifies it in a few conditions. So I wonder if that level of understanding in health literacy is far away for the general public?
JEN MORRIS: I think there are a couple of points to be made about that. I mean, the first one is that there is a very distinct difference between what I would call health literacy and what I would call health system literacy. They are very different things. Health literacy is based mostly on scientific concepts about biology, chemistry, those kinds of things. Then there is health system literacy, which is understanding where to go for what. When do I call an ambulance? What does an occupational therapist do? Who do I talk to about such and such? How long will I have to wait? What does Medicare cover? What do they not cover? What’s the PBS? That’s a very different set of questions, and the second lot sometimes gets forgotten, I think.
But also, in my experience, there are a lot of health practitioners out there whose health system literacy is actually not maybe as good as it should be. So I’ve had the experience where doctors of mine are shocked that I couldn’t find an appointment with such-and-such a specialist within that time period. They’ve never had to go out and make the 12 phone calls and try and do it. That’s not a criticism, they’re just living a different life than me.
There’s a lot of misunderstanding out there about what it means to navigate the system, and I think that sometimes clashes with the health literacy question, and people will say, for example, the reason that my patient won’t – they will use the word “comply” – with such-and-such treatment –maybe they don’t understand – maybe they didn’t know where to go, what to do, they couldn’t afford it that day. There’s a lot of issues being crossed over, I think. The patient is not always right and the consumer is not always right, in a factual sense, but the practitioner is not always right either. And there’s not sufficient and honest, open, transparent recognition of that fact.
And I think it’s important for us to understand – and everyone to understand – that there is a difference between a patient’s factual knowledge and their knowledge of themselves or the person they’re caring for. One of my colleagues who has done a lot of work in the paediatric space as a consumer, talks a lot about, for example, “the critical language of patients”. So when you have a parent of a child in hospital and they’re saying something is not right, you know, “She’s not normally like this, she’s just a bit floppier than usual.” What that is is what we call the “critical language of the patients” where, actually, their experience with themselves is relevant in that moment. I don’t think we give enough credence to people’s expertise about their own bodies and their own lives and their own experiences. And that’s really important.
MIC CAVAZZINI: You had quite a strong statement about these same problems being solved by the same people with the same preconceptions. Have you felt this kind of resistance that people aren’t prepared to look outside the box to solutions they haven’t come up with in the past?
JEN MORRIS: Yeah, I think two of the common responses that I will see and hear when these issues are being discussed – the first one is that there’s this understanding or belief that only people who, really, are on the ground everyday, who work in the system everyday, can really understand it and, therefore, can really solve it and really get it and know what’s going to work. However, I think it does create a barrier to, I guess, people being able to lift their gaze a little bit from the inculcation that they experience on a daily basis.
And one of the other things I hear and read a lot is that there’s something special about healthcare that makes it incomparable to any other industry or any other place where problems have been successfully solved or, at least, successfully reduced.
And I think it is about understanding that any system is really just made up of small parts and it’s easy for all of us to just throw the difficult things in the “but it’s the system” basket. System factors are a thing, however, on the other side of things, we need to recognize we – and I mean patients as well- we are the system. Individually, we make it up, so one person cannot solve the problems or a problem in the system, but we can do our best to not contribute to it. And if every individual does their best to not contribute to it as often as they can, the multiplying effect of that is really significant.
NARR: Many thanks to Jen Morris and Des Gorman contributing to this episode of Pomegranate Health. The views expressed are their own and may not represent those of the Royal Australasian College of Physicians.
Make sure to download the next episode where we’ll hear from some members of the new RACP Consumer Advisory Group. Go to our website racp.edu.au/podcast to find a list of all the references we’ve talked about today. You can log CPD credits there, and participate in the discussion via the Comments section. The more the merrier, so please leave a review of the podcast at your favourite pod browser, or tell your colleagues to check it out.
I’m Mic Cavazzini. Until next time.