Ep43: What’s in a Name? - Disruption Part 2

Ep43: What’s in a Name? -  Disruption Part 2
Date:
18 December 2018
Category:

Fellows of the RACP can claim CPD credits via MyCPD for listening to this episode and reading the resources below.

This is the second of two podcasts about "disruption" in healthcare. We hear from members of the RACP Consumer Advisory Group about the way they see the power balance in health service delivery and how to increase participation.

Consumer advocate Jen Morris discusses autonomy, and all the subtle aspects of informed consent. Another factor which can give the public a greater sense of agency in their care is access to health data.

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 that terms like patient and consumer might be relevant to different points in person’s journey through it.

Guests

Professor Des Gorman FAFOEM (University of Auckland; Executive Chair, Workforce New Zealand), Jen Morris
RACP Consumer Advisory Group members Hamza Vayani, Debra Letica, Ezekiel Robson

Credits

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, ‘Organic Textures 2’ by Johannes Bornlöf, ‘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

Literature
Citizens, consumers or patients: what’s in a name? [IMJ]
Looking to tomorrow’s healthcare today: a participatory health perspective [IMJ]

Other podcasts
Communicating Medicine through Social Media [PediaCast CME]
Words [IM Reasoning]
Meet e-Patient Dave [TED]
Doctors sound warning over online patient reviews [ABC]

Transcript

MIC CAVAZZINI:          You’re listening to Pomegranate Health. A podcast for physicians of the RACP. Before we start, I want to invite you to join the podcast editorial group for 2019. The role of the group is to provide feedback during the planning and editing of every episode. It’s fun, it’s all done by email, and it’s worth a few CPD credits for Fellows of the College. There will also be room on the group for a couple of other health professionals. There are expression of interest forms at the website racp.edu.au/podcast which you can return by the end of January.

We’ll also be seeking input from the RACP Consumer Advisory Group, which you’re about to hear from. The group was set up recently to increase the patient-centred focus of medical education, professional standards and advocacy.

This is the theme of today’s story. In the last episode we talked about what value proposition healthcare providers offer to an ever-more informed and empowered public. Go back and listen to that for some examples of how deal with the pros and cons of the information age. Today we’ll explore concepts like autonomy and data access, and some of the semantic baggage in the words patient and consumer.

HAMZA VAYANI:         So I’m Hamza Vayani, member of the RACP Consumer Advisory Group from the Gold Coast in Queensland.

DEBRA LETICA:            I’m Deborah Letica from Perth, Western Australia. I’m involved in a lot of safety and quality committees. I came into the role after becoming a carer for my brother.

EZEKIEL ROBSON:        I’m Ezekiel Robson. I live in Auckland. I bring a long history of consumer health and disability advocacy.

MIC CAVAZZINI: So, starting very very broadly, what do the words ‘patient’ and ‘consumer’ mean to you?

HAMZA VAYANI:         I think there’s a distinction. I think a patient means you’re a recipient of care and that you may not necessarily be an active participant in the care that you receive.

DEBRA LETICA:            I think it becomes a personal choice. Some patients want to be seen as a patient. I mean, even the term being admitted to hospital and being discharged from hospital doesn’t sit well with me; it means I’m giving up control of my life to you and that’s not how I would like it to be. You know, if I need to go into hospital, I would rather the term, “check in” and “check out,” because that gives me personal control. I think using the word consumer is much more respectful to the person sitting in front of you because it’s more empowering for them, it actually puts a little bit of responsibility for being a partner in their own care. It sorts of sets up that collaboration.

HAMZA VAYANI:         I think a consumer, whilst it’s about active participation in that process in terms of your receipt of care as I’ve described, you know a consumerist construct that puts a materialist value on health. So I’m not sure I’ve got the language worked out around patient, consumer, or whether there’s another term. But I’d like to think we don’t commoditise health, we think of health as something everyone has a right to.

EZEKIEL ROBSON:        Well, first and foremost, I just see them as labels. They bring with them all these assumptions that people have, but with all labels we just have to understand what the assumptions are that come with those labels. People should be given the opportunity to claim and own whatever terminology they want to use and indicate when they’re less comfortable with some language.                  

MIC CAVAZZINI:          Do you feel there’s a power imbalance in your relationship with doctors or the healthcare system, generally?

EZEKIEL ROBSON:        Yeah, it’s easy to feel powerless when you’re a passive recipient of a service that you have no control over.

DEBRA LETICA:            Absolutely, yes. Absolutely, yes. I think when I started out on this journey of being a consumer carer rep, I was not all that confident to challenge that perspective. You know, you’re told to do – “Do this, do that.” Rather than me being able to ask questions.

HAMZA VAYANI:         I think it varies- it ebbs and flows. I think when you’re well and when you’re informed and when you’re really engaged, you, arguably, have a fair amount of choice. At least, you would believe you have a fair amount of choice because you actually have time and ability to really think things through. But when the unexpected happens, it’s really about how responsive the system is at the time. And inherently, in the more complex cases or where there’s a limited availability of specialists, there is a power imbalance.

MIC CAVAZZINI:          Do you have faith? Do you have trust in the system and the individuals that…. ?

HAMZA VAYANI:         We’re very lucky in Australia, I guess, to have a universal healthcare system that kicks in. But I think there’s a couple of variables in the mix. It very much depends whether an event happens. So if you’re caught up in a rural, remote regional area where the specialists may not be on tap then you’re very much at the mercy of – in terms of trust – around how quickly the local service can respond and/or transfer you to a major centre.

EZEKIEL ROBSON:        Trust and confidence take a long time to build, but can be lost in an instant. And I’ve had this experience, I guess. I mean, my particular area of interest is for people with disabilities and their ability to access healthcare on an equal basis with all others. So when you ask me, “Do I have faith in the system?” Do I have faith in the system to be inclusive and accessible for everybody. Well, I’d have to say no. Not through any ill intent, but just because there’s not enough awareness of what access means for everybody. Some people it will mean physical access to a building, some people it will mean different modes of communication, different formats of information. Some people it will mean involving family and whanau in conversations that are normally had just between patient and doctor.

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JEN MORRIS:   So this was about 8 years ago now when I was in my early 20s and I had consented to do a gynaecological procedure. 

MIC CAVAZZINI:          That’s Jen Morris, who champions the inclusion of community voices on hospital boards, research bodies and other committees. Here she talks about the traumatic episode that set her on this advocacy path.

JEN MORRIS:   And I was aware at that time that certain surgeons when they were doing that procedure, would tack on a second procedure as part of that. I was also aware that I didn’t want that second part of the procedure to be done. It wasn’t medically necessarily in my case, there was nothing to be gained. And it was well understood to be one of the lowest value interventions that can be done in Australia—it had come up in a study to that effect. So when I went and spoke to my surgeon I had very explicitly said and stated repeatedly that I was consenting to part A of the procedure and not part B, and that was a very very strong feeling of mine.  And he agreed, said “Yep, I’ve heard you, that’s fine. We’ll go ahead and do it that way.”

When I woke up from that procedure I expected a certain set of incisions and a certain set of symptoms, and that was all there. But I was also bleeding in a way that demonstrated to me that something had happened that I hadn’t consented to. When the surgeon came to see me I said, “Why am I experiencing this, have you done that other procedure?” And he very explicitly denied having ever done that and just said that it was normal what was happening to me and had nothing to do with that extra procedure. I was quite convinced that that was not true, so I only found out the truth when I did an FOI to that hospital for my medical records—or a medical records request.

I went to the Health Complaints Commissioner first because it was always my belief that he wasn’t necessarily, in any way, a danger to the public or anything like that. And what was at the core of my complaint was not about the medicine that was applied to me and how appropriate or effective the treatment was, it was about the consent and it was about that respect for bodily autonomy- that was at the core of the complaint that I had made.

Yet, I think what happened was the medical board looked at it with the wrong lens and sort of said, “Well, the medicine here was fine, so it is fine.” And the eventual response I got was, “Well, it’s his habit to do that second part of the surgery, it’s what he prefers, therefore, by seeing him you accepted that.”

MIC CAVAZZINI:          Do you feel like that’s individual practitioners or is it systematic as seemed to be the case with the way the authorities deal with it.

JEN MORRIS:   There will always be differences between individual practitioners, so I’m sure there are many that do a very good job of that and understand all the elements that matter to a patient and I have no doubt there are many of those. There is a general understanding that risks and potential benefits are needed to be discussed in a consent procedure and, of course, those things are important. Where I think it falls down is there’s not necessarily a broader understanding that there may be other aspects, for example, cultural things with respect to what they will and won’t want done to their bodies. Some patients have trauma histories that make it very sensitive, you know, what is and isn’t done to their bodies. And I think those aspects of what it is to be a human being having your body dealt with by another person, and the non-medical aspects of consent get lost a little bit.

And there are aspects of that that are individual, there are aspects of that that are about how consent is taught, how the profession is regulated and I think the other thing I’ve noticed is that for health practitioners who do the same procedures or give the same medications, day after day after day after day- you know, for them it might be the five thousandth urinary catheter that they’ve put into a patients’ body- and so for them, they almost don’t really process it is as a consent worthy-procedure, it’s just a thing you do everyday. But they forget that, in many cases, for the patient that may be the one and only time that’s ever happened to them and for them, it’s the most extraordinary event in their life that year.

MIC CAVAZZINI:          You say that more and more patients aren’t swallowing the line, “Just trust us,” from the profession. You cited one example—a mother of a paediatric patient who said, “I no longer accept that I can find out more about the quality of the hospital café than the surgeon operating on my daughter’s brain upstairs.” What does this say about the transparency of the services available to patients and consumers and carers?

JEN MORRIS:   Yeah, there are certainly challenges with respect to transparency around certain things. I think we’re getting better and we’re seeing some improvements in terms of transparency about things like waiting times or some of the reportable safety measures. If people want to go on MyHospital’s website and see infection rates and see that kind of thing, some of that transparency is improving.

Where this sector, I think, is falling behind the rest of the sectors in modern society is around information about individual practitioner safety and individual practitioner quality and individual’s experience, I guess. You know, it’s very difficult for me to find out how long my practitioner has been doing Whipple’s Procedures and how many they’ve done, for example. If you think about that, really, in terms of relative consequences it’s quite an extraordinary position in which we find ourselves

And that’s not a reflection on the fact there’s this great number of practitioners out there – that’s not the case, but Australian data has shown us that there is approximately 3% of registered practitioners in this country that do have significant medico-legal risk patterns in the way they practice, and your average patient has no concept of who that person is and, therefore, doesn’t really have the informed in ‘informed consent’. The final pillar of information that’s really missing from patients in making informed decisions is the quality, safety, style, the preferences of the person who’s sitting across the table or beside the bed.

MIC CAVAZZINI:          To draw on that, perhaps tired, comparison of the aviation industry, I find it interesting and important that this is becoming a demand of the medical profession. I also find it interesting that people don’t have the same demands when they get on an aeroplane; they don’t expect to be participants in flying the aeroplane, they don’t expect to know who the pilot is and what the record is. I wonder why there is that difference?

JEN MORRIS:   First of all, the premise that you put forward is an interesting one in a sense that maybe we do need to look at whether or not people should have that information- I wouldn’t necessarily disagree with you on that basis with the pilots. But I think, why the difference? Medicine is personal for a lot of people going through the healthcare system, particularly, with long-term experiences – if they’re going through a chronic illness, if they’re going through multiple surgeries, multiple procedures or really personal things like mental health and sexual health. They really want to know who they’re letting into their world in that respect and who they’re letting into their life, and that is fundamentally different than which particular individual is going to hit autopilot on the plane.

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MIC CAVAZZINI:          This conversation only scratches the surface about these questions of risk and consent. There are just so many variables that can affect the outcomes of a healthcare episode- differences in biology, and psychology and preferences and service efficacy. It’s hard to know how all of this can be communicated to the people coming to see you, although we’ve touched on this in episodes 21, 25 and 38. 

As we noted in the last episode, consumers and commercial operators will always find workarounds if they feel that an industry isn’t meeting their expectations. In Australia and New Zealand, the directory website Whitecoat describes itself as "the TripAdvisor of healthcare." It allows members of the public to write a review about a provider listed on the site- most of the whom are associated with three of the major private health funds which provide financial support to the site. For a fee, providers can claim some control over an existing profile, or generate one from scratch. 

For the time being, the site’s creators say the reviews must focus on customer service and costs, but there are plans to pull in clinical data as well according to a report on ABC's 7:30. You can imagine how polarised the reactions to this might be. There are those who argue that given the lack of data, the public has no good reason to trust their GP’s subjective referral to a specialist. 

Conversely, too many performance measures can be a can of worms. A clinic might game the system by not taking on complex patients. Or remember the four-hour rule that was supposed to put a cap on the waiting time for patients arriving to emergency. In the UK, hospital trusts were fined if they didn’t process a most visits within this target time frame,  but this incentivised some perverse solutions. Many patients were kept waiting in the ambulance so that the admission clock would only be started at the last moment.

If the experience of the restaurant rating sites is anything to go by, unhappy customers are more likely to leave reviews than satisfied ones. The NZ Medical Association is also concerned about the bias of “purchased influence” of such a ratings site, but Whitecoat’s creators have clearly tapped into a public appetite for greater transparency. I’m editorialising here, but perhaps such platforms would be seen as less authoritative, were there some system-wide standard for access to performance data. As we’ve heard from past speakers, admissions of uncertainty and even error, often enhance the trust between doctors and patients, rather than diminish it.

DES GORMAN: If the medical profession, then, is to avoid the fate of dodos, bank tellers, and the probably fate of the London taxi driver, then what does the medical profession need to do? And what are the available options for the leadership challenge—and I’ll just leave you with some thoughts.

In the last episode Professor Des Gorman, Executive Chair of Health Workforce New Zealand, argued that the health system should behave more like a service industry in understanding its consumers. But what is a consumer as opposed to a patient? I raised this question at the Congress seminar on disruption that Professor Gorman presented in May. The recording also includes a response from Professor Helena Teede of Monash Health- then you’ll hear a more recent follow-up interview.

MIC CAVAZZINI:          I’m Mic Cavazzini, I make the College podcast in which Helena has made a wonderful appearance. I’ve got a sort of a semantic question. When we talk about consumers instead of patients – that word makes me wince a little – it suggests a service industry like Starbucks. It suggests on-demand TV where we take for granted the artists that produce it. It suggests angry reviews about restaurants and appliances; how do you restore a sense of privilege in the health system? Is it the answer that Helena provided about participation in research and management.

DES GORMAN: Mind if I lead off, Grant? You need to get over yourself. We are a service industry. We do serve people. Where do you think – I don’t know you  – I think you might be a very nice person. When Minute Clinics were set up – do you know what a Minute Clinic is? In 33 states there are minute clinics run by nurse practitioners and they’re commoditised. There’s a series of commoditisation in which you go and choose a menu, and a Nurse Practitioner comes and delivers a particular service against that commodity and the menu you chose. Very high satisfaction rate, very high 90s, very high success rates in terms of diagnostic accuracy and following the algorithm – who do you think they got to run that? The former CEO of Burger King. If you’re going to go down the commoditised path and get someone who understands service industry and commodities.

We call them patients because that’s part of the paternalism – I’m sure this is what Helena is going to mention to you next when I finish – but we just have to get over ourselves, we’re a service industry, and we have to understand the expectations and requirements of the people we serve. And I think the concepts of patient and the way in which we’ve portrayed them is profoundly paternalistic. And every time a group of doctors is challenged, we start talking about our privilege – well, do we deserve that privilege, frankly? Have we done enough to deserve our ongoing privilege – it’s a separate question. But, no, I think the semantics are important -you’re absolutely right. But I think we’ve got to get over ourselves and start seeing what we are which is a service industry. So I didn’t mean to be rude, but thank you for the question.

HELENA TEEDE:           Can I be slightly controversial here, because I’m going to disagree with you even though people thought I would agree. And one of the reasons is if you look at the evidence about the term “consumer” and the term “patient” – How many of you have been really sick - really sick and vulnerable in hospital?  How many of you when you were really sick felt like a consumer? So there’s really good compelling research out there about the fact that the patient is a concept, a construct around there being a vulnerability. The problem is the way we interpret patient and the paternalistic attitude to the way we do it.

But a patient is different to a consumer who is out there being savvy for you to make money out of. I have one challenge – I think the US health system, in so many ways, challenges my personal values, but we often look to the service industry which is a brilliant service industry. I don’t know how many of you have walked into the foyer and seen the grand piano and the spectacular expense and front and centre, is the service industry and it’s all about making money. So I think there’s elements here, but there’s a difference between a consumer and a patient. We can take it offline, but there’s a lot in what you asked.

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MIC CAVAZZINI:          To revisit the clash that we had a that seminar; I expressed my discomfort with the term “consumer” in that it sounds like it commodifies health services. It’s smacks of on-demand music that no one wants to pay for. How do you find the balance—

DES GORMAN: Mic, I apologise to you for my response.

MIC CAVAZZINI:          I enjoyed that. I like a rigorous argument.

DES GORMAN: Yeah, that’s fine, but I walked away from that meeting and thought, “No, I got that wrong.” And my response was wrong. I understood why I made the response I did but it was the wrong response, and I hope when you saw my follow-up article that you saw that I was actually—that conversation with you led me to develop that triangle of roles where I’m arguing that most people spend most of their lives well, and so we should see them as owners of their health. So the right term is “owner” and the health service in that context is to support them and that ownership. Then people develop intercurrent health problems and, if you like, this is the middle bit of the pyramid. And those intercurrent health problems – that’s when they may consume health services. They are “consumers”, they are “clients”. And, hopefully, the tip of the pyramid – which is a small tip for most people – is they develop significant illness and injury, and I think that’s when they become “patients”, and that’s a more passive role. And that’s where the health system needs to become a “carer”.

MIC CAVAZZINI:          And I like the idea of “owners” of health. I don’t know if you drew that term in the intervening period or if you came across it elsewhere, but I think it captures well that we are paying for this system. This is coming out of our public taxes and, therefore, we literally are owners of this system and we have a right to participate in its direction.

DES GORMAN: Completely. Where those terms came from, Mic, was you. I mean, on the way home, I sat on the plane home and said, “He’s right.” The point that you made that a different term is important and because that term implies a quite different role for the health service.

MIC CAVAZZINI:          In the recent weeks as I’ve been preparing for this interview, I’ve added another point to the triangle. So when people are largely healthy they’re still owners, and I’ve just interviewed Jen Morris about the role of the public hospital boards, editorial boards for journals, research funding decisions. When people are consumers, as you say, they’re putting a demand – a service demand – on the industry. And even when people are patients – when they’re sick – they should be included as much as possible in the decision-making process— “How is this treatment going to affect me and what options do I have.” And the final point of that which occurred to me is – there’s one line in your article that mentions Advanced Care Directives. I don’t know if you had this in mind, but even when people are very, very sick and they don’t have the capacity to be incorporated in the decision-making, their ownership and participation in the decisions is included even then.

DES GORMAN: Look, I agree. I think the reason why I’ve focused on Advanced Care Planning and on owning health records is that they are discernible, explicit steps towards a shift in the locus of control. And they are achievable. And the great thing about Advanced Care plans is not only does it shift ownership of how people die to the person themselves, but we actually know that they survive longer and better. It takes cost out of the health system. So it’s one of those things where everybody wins.

And the same is true of owning health records – I mean, the way to get the citizenship to stop seeing health as something which – when it happens to them, someone else will fix it, but something over which they have control – at the very first step is, at least, make them responsible for their health records. In the same way that people’s attitudes to banking has changed as they gain more control over their bank statements and transactions and banking.

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MIC CAVAZZINI:          The question of how to manage health records safely isn’t trivial. There are concerns about data security, about interests from third parties like insurance companies, and about creating anxiety for the “worried well”. Some health districts in New Zealand are trialing remote access for patients to the results of their blood tests.

But in the meantime there are simple steps that don’t require a lot of technology. “Hand-held patient notes” were commonplace before computers took over – and in the UK they’re still given to most expectant mothers to give them a greater sense of control over their care. 

Dr Marion Leighton of the podcast editorial group, told me she that writes all her clinic letters to the patient not the referring GP.  "You told me you’d been feeling this and we’ve identified that possibility. We agreed you’d try this strategy and that you’d check back with your GP in three weeks." She says her patients really engage.

There is an ethical case to be answered as to who has rights over some of the most intimate information about a person’s life. The catchcry of consumer advocates is, “Nothing about me without me.” Here’s Jen Morris once again.

JEN MORRIS:   Yes, and I have to speak up for those who are different from myself. Who are of the type who are quite happy for things to just happen around them, or they might say, “Look, I want my daughter to make that decision.” There are people with all kinds of different views on how much input they wish to have in their healthcare, and that’s completely valid and we need to respect that too. But those whose approach is, “I wanted to be involved,” then, yes, “Nothing about us, Without us” is I guess, the catchcry for the wider sentiment about, “This is my body, this is my life, this is my choice.”

What it goes to is the concept of ownership. There have been various legal cases examining that, but I think at a more ethical and human level – the law aside – there are some serious questions about who owns information about my blood tests? Who owns information about my genome? Who owns information about my scans. We see it in a very everyday sense if I want to access a letter that’s been written from my specialist to my GP. My GP has a certain attitude towards that that is very helpful for me, but other people have a lot of difficulty accessing those things because there’s stuff that gets said about, “Well, it’s private communication between us so it doesn’t belong to you”, and some of those questions.

But I think it’s one of the few areas of information collection where information is collected in an identifiable sense, so we’re not talking big data stuff, that people still have great difficulty in accessing it when they shouldn’t because it typically doesn’t do a lot of harm. Realistically, people move a lot these days—they move geographically, they change doctors, they change hospitals, their lives are very portable. The best way for that information to follow them until we get e-health records right is for them, if they wish, to have access to that information and to be able to carry it. I think it’s a really important question of power and ownership that we allow people to hold what is about them.

MIC CAVAZZINI:          So just expanding on the conversation of power for a minute, to the role of consumers on hospital boards and so on. In Europe, there’s a group called Patients Included which awards a stamp like the Fair Trade logo to organisations that include consumers in decision-making. At Congress you gave an interesting example of this from a university interview process.

JEN MORRIS:   Yeah, so there are some universities in Australia these days that do include - what you might variously term community members or consumer members – on selection panels, and what has been really powerful about having that perspective in the room is that consumers, community members on those panels – usually alongside practitioner members – will see things and hear things just differently, as we all do as humans, from people in the room who might have a different set of things that they’re looking for.

So, the example I gave was not mine but somebody else’s. What she was talking about was—she is an indigenous person, and she is dark skinned—and that she had been in an interview with a candidate, and it got to the end of that interview, and the person had said all the right things and they had a momentary discussion, as they did, about all the candidates just before they moved on. Every said, “Alright. Sounds good,” and she just stopped everyone and said, “Did anybody notice that the candidate did not look at me once the entire time that they were here?” This candidate had made eye contact with every other person on the panel, except herself. We can variously speculate as to what that means about that person – and I’m not going to do that – but it was a point in time that she saw something different in that situation than the practitioner members did. And I think that’s emblematic of the kind of role that consumers and community members can play in those kinds of positions.

MIC CAVAZZINI:   Just as in the previous episode, we’ve touched on some provocative material and we haven’t provided all the solutions. What you’ve heard might not be reflected in your own experience—but there’s value in hearing out different perspectives. I'll leave the final words to the three members of the RACP Consumer Advisory group I introduced earlier—they are Debra Letica, Hamza Vayani and Ezekiel Robson.

MIC CAVZZINI: What’s one thing you’d like to see that would make the health system more participatory.

DEBRA LETICA:            I think by consumers sharing their lived experience is a vital learning tool. You can learn a lot from a text book. Data in healthcare is important, but it’s about numbers, and numbers are impersonal. And healthcare is a personal journey—it’s individual. To get well and keep well is different for all of us.

HAMZA VAYANI:         It’s a beast, health is, I guess, in terms of we’ve got too many layers. I had an ear infection. It was horrible, actually, I’d not had one for years. But it turned out that I needed to go and see a specialist, because the GP had attempted a number of ear drops. I had absolutely no choice or anywhere else to go, and because he could prescribe and arrange for those drops to be made through a compound pharmacist. It cost me 220-odd bucks and then there was some gap from Medicare. But it was still a sizeable out of pocket cost, and it turned out that my private health cover did not cover the cost of the specialist unless I was being seen at a private hospital venue. So those types of out of pocket costs for relatively simple things even in this day and age in 2018 seems crazy, to me, that should not be happening in our system.

EZEKIEL ROBSON:        And it’s important that we don’t just focus on trying to please most of the people most of the time, but that we really do think about how will people achieve the same outcome? How will everyone achieve the outcome of access to quality healthcare? We have an expectation of much more active choice and control. We would like to know what the options are, and we’d like to know what the effect of one choice over another is.

MIC CAVAZZINI: And finally, how important is a project like the College’s consumer advisory group.

DEBRA LETICA: My goodness, it’s commendable to the College. It’s a shining light—every health service board, everywhere, nurses, the whole gambit of training accreditation, the medical board the whole lot of them need to have the consumer voice and hear us, because you don’t understand the patient experience until you feel it.

HAMZA VAYANI: Look I think it’s fantastic and I don’t want to sound cliché here – I think it’s really important because we don’t lose the heart of the relationship between a physician and a patient. And I think that’s the benefit and the beauty of what the Committee is about. Outside of healthcare, they pay a lot of money for market research to ensure the end user gets something that’s simple and easy to use. There’s an immense amount of R&D and consumer perspective that goes into reverse engineering the end-product, and I don’t see why we shouldn’t to that in healthcare. Because the bottom line is that it results in better healthcare experience. Probably results in better clinical outcomes, which is what physicians are interested in, and I would imagine, aggerate over time, probably saves us money.

EZEKIEL ROBSON:        Cogovernance and codesign, and co-evaluation of health services is the current climate that we’re in. Just because it’s very strategic or requires a lot of reading, or it has a lot jargon or medical terminology or complicated financial information or any of those things, none of those are good reasons to not involve consumers. You know, we are sometimes the only constant in a healthcare system that’s constantly changing around us. I’ve been involved in boards where people are elected and appointed and then their term is complete, but the consumer representative is the only one who stays throughout. I imagine it’s the same thing in the healthcare setting—staff come and go and change from job to job, but health consumers are the same people, the same patients who attend clinics year in year out. 

MIC CAVAZZINI: Many thanks to our consumer representatives Ezekiel Robson, Debra Letica and Hamza Vayani and also to guests Jen Morris and Des Gorman. The views expressed are their own and may not represent those of the Royal Australasian College of Physicians.

If you’d like to be involved in the podcast editorial group for 2019, please go to the website racp.edu.au/podcast. I want to acknowledge the outgoing members, who have generously given their time and wisdom over the year year. They are Rebecca Grainger, Michael Herd, Marion Leighton, Joseph Lee, Rhiannon Mellor, Paul Jauncey, Rachel Williams, Mahesh Dhakal, Rosalynn Pszczola, Philip Gaughwin, Andrea Knox, Pavan Chandrala, Ellen Taylor, Alan Ngo, Katrina Gibson, Phil Britton and Phillipa Wormald. My deepest thanks.

And thank you for listening to Pomegranate Health. I’m Mic Cavazzini. Enjoy the festive period.



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14 Oct 2019
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