Welcome to the Optimal Care Pathway for Aboriginal and Torres Strait Islander people with Cancer webinar looking at prostate cancer.
We recognize the traditional custodians of the lands and the seas on which we live and work, and we pay our respects to Elders, past and present.
Today's presenters are Associate Professor Justin Tse. Associate Professor Tse is the Clinical Dean, St Vincent’s Clinical School at The University of Melbourne.
He has been involved in medical education for twenty years and has interests in intern readiness and e- learning. He is also involved in cancer research and completed a thesis on Prostate Cancer screening. He is a primary care physician and also serves as a Research Fellow, Cancer Council of Victoria and an advisor to the RACGP on cancer related care.
We're also joined by Dr Timothy Senior. Dr Tim Senior works as a GP at the Aboriginal Community Controlled Health Service in South West Sydney, and holds clinical lecturer positions at Western Sydney University and Sydney University. He is the Medical Advisor of the RACGP Aboriginal and Torres Strait Islander Health and Chair of the Environmental Impacts in General Practice network in the RACGP NFSI. He writes on General Practice, the social causes of ill health and successfully crowd-funded Wonky Health, a column on the Croakey health website, on the health effects of policy decisions. He won the Gavin Mooney memorial essay prize for an article on the language used in climate change campaigning
We are also very lucky today to be joined by Mr Ken Lechleitner from the Two Ilpa Bi-Cultural Consultancy. Two ilpa means to hear with both ears in both cultures to make sense of one’s own cultural world and other peoples cultural worlds, and find that solution.
And now Dr Tim Senior will start the webinar.
Thank you very much Daniela, and good day to all of you. I hope you're all staying well.
These are the learning outcomes for today, which is the educational speak for what we're hoping to get out to the next hour or so. So by the end of this webinar, participants will understand the Optimal Care Pathways themes and principles for providing effective culturally responsive healthcare for Aboriginal and Torres Strait Islander people with prostate cancer, will be able to identify the risk factors for prostate cancer, will discuss some of the barriers to effective implementation of follow-up treatment and monitoring, and we'll identify strategies on how to apply the Optimal Care Pathways resources and knowledge to improve our own practices with prevention and early detection of cancers for Aboriginal and Torres Strait Islander people.
So the Optimal Care Pathways are a series of resources produced by Cancer Australia, partnered with the Department of Health and Human Services in Victoria, and the Cancer Council, Victoria, and there’s ass we'll see in a minute, there's different pathways for individual specific tumours, but there's also a pathway describing the Optimal Care Pathway for Aboriginal and Torres Strait Islander people with cancer. It complements the tumour specific optimal care pathways. So, the idea is that you use them both in conjunction with each other, and it contains guidance for health practitioners, as well as service planners on what ideal care for Aboriginal Torres Strait Islander people with cancer through from screening and diagnosis, and all the way through treatment and post surveillance, what ideal care looks like for Aboriginal and Torres Strait Islander people with cancer.
One of the reasons for doing that is that we know that, while the incidence of many cancers in Aboriginal Torres Strait Islander people is the same or lower, the mortality is often higher. They're often diagnosed later, or people have more difficulty continuing with treatment, and so these pathways are designed to help overcome those obstacles, and the Aboriginal and Torres Strait Islander optimal Care Pathway is designed to be used with all of the specific cancers guideline documents.
These are the key considerations that they have about understanding the patient, about really good communication with our Aboriginal and Torres Strait Islander people, and also ideas for practical considerations for consultations with Aboriginal Torres Strait Islander patients. None of those three would come as a surprise to those to us, all, working in primary care with Aboriginal and Torres Strait Islander people.
It's also important to think of systems of care. So, we have most control over our own consultations, but often the the journey that people have through the organizations health services that provide care is not as good as it should be. And we all hear those stories quite frequently. So it's important to think about those systems and how they're working for Aboriginal Torres Strait Islander patients and how we can advocate on our patient's behalf to make their experience of health services and health systems better than it has been in the past.
As GPs, I suspect most of us a GPS, but as GPS and primary health practitioners, we all know it's really important to understand things like people's context, i.e. what's going on in their family, what's going on in their social circumstances, the sorts of information that they have access to and ways of getting information, and ways of who they get information from. It's important to think about how accessible services are, either geographically particularly in rural and remote areas, but also financially and whether people actually have transport services. Also whether people are going to feel that they are treated fairly right from entering the door and their interactions with receptionists, with nurses, with doctors, and with all sorts of other health professionals. So we really need to understand quite a bit about that patient context to do all that. We'll go into some of that in more detail and now I'm going to hand over to Justin for some of the statistics relating to prostate cancer.
Justin: Thanks, Tim and thank you for the opportunity to present today.
Just to start off with prostate cancer and these are some statistics regarding the general population. So as you can see on the slide set, just over 19,000 miles diagnosed with prostate cancer. These are 2019 figures. Of all the cancers that represent 25%, and it is the leading cancer in men in the general population.
Each year, 3,306 deaths occur from prostate cancer and this represents 12% of mouth cancer deaths in Australia. The five year mortality rate is 95%, that’s been steadily rising, obviously with capability of being tested and nature's management options, which includes surgery, radiotherapy, and other treatment options.
Currently, over 90,000 men are living with prostate cancer, and this is from figures from 2014.
Moving to the next slide. With the Indigenous health population, this is the second leading cancer, with the number one cancer being lung cancer. In the First Nations population it is under diagnosed compared to the general population, and between 2009 and 2013, there were 526 new cases, representing an average of 105 cases per year. In regards to 2011 to 20 15, there were 83 Indigenous Australians who die from prostate cancer, an average of 17 deaths per year.
So, in summary, five year mortality rates there is an 86% on average that are alive at five years, and this is compared to the general population where the five year mortality rate is 92%. So bringing a really important slide just to set the same for this afternoon with the summary, it is prostate Cancer underdiagnosed.
If diagnosed and treated the five year survival rates are worse than for the general population, and that's why today's webinar is pertinent so that we will review prostate cancer with a First Nations focus, and we'll focus now over the next few slides on prevention and screening, diagnosis and management.
I just want to go through the current prostate cancer screening guidelines and those were set in 2016. It's a consensus statement which has been agreed by the Cancer Council Australia, it had PCFA involvement along with endorsement by the RACGP. Most of you will know these guidelines, but just to summarize the current recommendations are that 50 to 70 year old men should be offered the pros and cons of PSA testing, and therefore be able to make an informed consent.
At the moment due to rectal examination it is not recommended as part of the screening guidelines and if testing is normal, we will re-test with consent every two years. Those unlikely to live more than seven years should not be offered the PSA testing for screening, and the fact that with medical training, we often mention to students, that many patients will die at the age of other diseases rather prostate cancer. So obviously, not to offer inappropriate testing. However, we do have an older population that's living longer in the jail population and those over 70 should have a detailed discussion about the benefits and harms of testing before deciding whether a test should occur or not. And we've all things regards to health literacy and information to our patients, the role of decision tools is very important in informed consent. Over to you Tim and Ken.
Thank you very much.
As Justin was saying prevention and early detection is really important, and I think it's important certainly in my work with Aboriginal and Torres Strait Islander people there are often other comorbidities, both in in terms of other diseases and in terms of people's social circumstances and mental health as well. I think it's important that we understand that, obviously good communication is really important but also the fact that some people's level of knowledge isn't zero - they're often seen, had discussions in family and community, and so it's always worth checking what it is that people already know and understand.
Ken, in having a conversation like that with someone, what are the sort of approaches that you would take for what could potentially be a tricky subject to broach talking about cancer and particularly at being a men's health issue.
Alright, thank you Dr Tim.
The first thing in regards to communication is that, this is something that we try to advocate more that for the doctor to actually tell you a little bit of a story about who they are, where they come from, and where they're grown up. Because what that does is, it brings it down to a personal level of your patient understanding ‘Oh there's another human being that I'm actually talking to that actually grew up in this region, will come from that region over there, and I know that and then we have something in common to share.’ So instead you could talk about what's your comment on the footy teams or things like that. That sort of opens up communication that sort of develops trust as well. OK, this is how I can make you talk to my doctor or the doctor can talk to me and you're finding that sweet spot at how you communicate. Otherwise you go in and it's like ‘Oh this doctor is gonna. Oh how do I talk to this?’ because I've got a problem, but is this doctor going to able to read my mind?
So, to overcome all these things, we've got to be able to sort of introduce ourselves and say ‘Where do I come from? Where did I grow up?’, and then go “Ah, you're just another person like me, but we've got certain common interests. We can then talk like this.”
So communication is really important, but we've got to be the presenters of it, and also the ones that advocate that by being the sounding board as well, because we don't normally have a flow on communication like a tennis game, like someone says something and you respond. There is absolutely silence on the Aboriginal patient’s point of view because it's what we're trying to think about. How do I respond to what the doctor saying because one person might have limited English capacity, and then trying to articulate that back in the limited vocabulary becomes a little bit difficult as well. So we've got to assist people by getting them to paraphrase, or you can say ‘Look, I've given you a lot of information, can you tell me what it is that I told you?’ because that's the only way you can really understand that you've communicated something across.
That kind of helps with community and for more complex medical terminology or conditions use pictorials for a presentation or reference to a car body as people, men especially, understand cars. So I had to explain to a patient that was in the process of proving to the doctor that ‘Yes, I'm OK to go on to the treatment of dialysis.” When he was absolutely umming and arring ‘I don't really want to’, but then when I explained ‘it’s just like your petrol filter that’s not good. That's your kidneys and it's no good so we need to sort of clean it another way.’ So he was able to take that vehicle analysis of what a petrol filter does, and referred to his kidney, and then he said ‘OK yes, I understand now. I'm happy to go down this path of getting the treatment or you're getting hooked up on dialysis.’
Justin: Can I ask Ken, just with diagrams. Do diagrams help? Just if a doctor decides I'm going to explain this maybe through a plain piece of paper, maybe draw a diagram. Is that helpful to the indigenous population?
Ken: That's all very helpful. Also when an Indigenous client might say ‘Can I have my grandson or my younger brother with me” because that helps the actual conversation after the doctor's visit too, and gives them a way of discussion to deal with that issue on a much deeper level of understanding. Otherwise, you know, we get caught up with the client- doctor only confidentiality, but this is where you'll find in our region, an elderly will request a younger person to be present at the consultation to help with the actual communication and understanding. So yeah because that's what we want is the patient to understand where they're at in their current journey with their illness. So there's a lot of little side messages in there but using a pictorial backing with a family member as a support to help a much deeper communication would help eliminate this sort of communication problem.
That's excellent Ken, thank you.
I think the point about other people being present and who the patient wants to be present is really important. I always find that help from an Aboriginal health worker is really helpful, both in knowing the family and the context and what's going on for that person, but also being able to talk about things in a way that the people will trust. It's probably just worth mentioning that as a male GP I am able to discuss this with people. It doesn't mean that female practitioners can't, but often it's worth checking beforehand ‘Are you comfortable talking about this with me? Or would you rather talk about it with a male health worker or male doctor?’ and people will let you know. Some people will say “I'd be much more comfortable”, and some people will say ‘Oh, you're my GP. I'd rather discuss it with you.’ So, don't assume.
The other thing I'm aware that we've got family history down here. Many of our patients may not know what their family history is because it is not continuous. They or their grandparents or parents may well have been stolen generation and not know who their family is, and that bring up quite a lot of issues for some of our patients.
It does, because sometimes that part of the family history is not always known either, so that, that presents another complication. So if there isn't other family that's been involved, say another family member, in your life journey with an illness, then it's harder to share that sort of family history, unless people say that ‘Oh, yeah, my uncle so and so. My older cousin had this.’ So it's in the family, which then helps the families to come up with their own strategies of how they look after each other.
So it's certainly really important to have this family history check, because then people know that this little bit of illness is the passed down generation to generation.
Absolutely. We know it's important for prostate cancer risk, certainly, but it's an issue to be approach sensitively. I think being aware that our profession were involved in stealing children, so it can be it can still be a raw or issue for people. So needs to be approach really sensitively.
We move on to the next slide. Again, this is around informed consent. Now, the principles of what we do here aren't any different to the principles that we would be using for informed consent for anything else at all. And we really need to make sure that the patient is able to be happy with the decision they've made either way, so that they're comfortable about that they've got enough information to make the decision, and they're happy with the decision that is made.
I think the things that Ken was talking about, about visual representation, and not using jargon, and being able to discuss it with a trusted person, all go for informed consent for PSA screening. There are some really useful visual guides. I think the New Zealand Guidelines group do one, and I think the College of had one about the number of screening tests done, and the number of positive results you get, and then the number of negative result that can be really useful for talking to people about the risks and the benefits of doing the test, and then what the test itself involves. Is there anything you'd add on that, Ken?
Ken: Yes, with consent we’ve just got to explain that this is what you do when you’re getting permission. What we’ve started to discover really works as well in regards so far as communicating along jeopardy is using the AFL four quarters.
The first two quarters you've only just grown up and living. It's half time, which is around you turning 50. Now, this is where we say well third quarter is an important quarter if you want to get in front and win this game or be ahead when the siren goes.
So you're getting people to understand that well I’ve got injured on the side. Now with this injury, how am I going to play this out and play out this third quarter and march into the fourth quarter, so people understand that at the end of fourth quarter the siren goes. So it’s understanding the bigger picture in regards to my journey is now this. I’ve got an injury and people will understand that there are limitations in regards to four quarters in football, but you put that into some kind of age group and timeframe. People understand ‘Ooh, yeah I am running out of time, but I just need to do the best that I can.’
Tim: I really like that. I haven't heard that before and I think I like that the four quarters analogy. I'm aware that you're in the Northern Territory and Justin's in in Victoria, so you'll be right across the AFL stuff, like myself, I imagine the rugby league.
So we can adapt this analogy to suit our own patients. You may get strange looks talking about AFL to some of the New South Wales or Queenslander patients. But, I think that's a really helpful analogy about the different stages in life and talking to people about the different approaches that you take at those different stages in life to actually get to the end of the game.
Justin: Tim and Ken, just a practice point and that's where a patient may be after a discussion. Let's say he's 53 after discussion with family, family members. The patient decides not to undergo PSA testing. One of the things as a practice point is that, in years to come it's a conversation to revisit, so you started and this is prostate cancer. Obviously look at, with respect, the family history, an informed consent and going through the pros and cons. So, it's not a static decision but a decision that may change over the course of time.
Tim: I think that's really important. People have the right to change their mind, and we'll have talked about it with family members and with other men, and I'd say we’d want to re-discuss it. It's one of the fantastic opportunities we have as GPs, is that we do have that relationship over time that we can revisit conversations like that months and even years later.
Yes and let's not forget to use the football analogy as more or less, you're taking yourself out of the game, but to be part of the game you have to be playing actively and taking active treatment. And all of those things is playing the game. They're playing the game of life. So you could use that otherwise you could sit on the bench for a little while and then come back again. But, you know, you've got to make that choice
Absolutely. I think it's worth pointing out, that our role here is to allow people to make a decision that they're happy with, rather than to persuade them in one direction or the other.
I think the crucial importance of this is that for over 200 years we've removed the right to make decisions from Aboriginal Torres Strait Islander people, and so we actually need to do, as part of our, is giving that back to people so they are making their own decisions. And that people who are unable to have control over their own life are actually happy. So we're not persuading them one way or another. It's about, as far as we can, allowing people to make decisions that they are really comfortable with. And that can change over time.
Yep, that's it.
So if we move on to the next slide. This is as an important slide around the records and the computerised records. In primary care, like general practice is using electronic health records much more than the hospital systems are, I think. Again for the role of screening, and then the tracking of people across diagnosis and surveillance, the use of electronic health care records are really important. It allows us to use disease registers so that we can easily bring up search, a list of all the people with prostate cancer or a list of all people with other cancers so that we can be systematic in in providing care at particular points in time using call and recall. That's really important in conditions like cancer where the stakes are high. So we do need to be able to diagnose early, diagnose recurrence and track people's health as they go through treatment.
So, our records obviously are our friends here. I think the other important thing as well, is that, for many patients, the use of My Health Record may well be important here, because it allows us to document with the patient, their precise diagnosis and a plan of care, and a summary of that medical care.
Particularly Aboriginal, Torres, Strait Islander people who might be quite mobile between different clinics and between different services, the ability to share information reliably through something like My Health Record can be really important for continuity of care, and for allowing more certainty over what's happening for that patient.
Just to emphasize the point, it's not only the health summaries but increasingly, we're hoping the hospitals - over the next few years will have more buy in to the My Health Record, but we're seeing a lot of chemists now being able to put information into My Health Record and it can also say the blood tests being done. We know many patients, even if they're not mobile, don't go to multiple pathology services and just be able to see a kidney function test over a period of time spread over a number of providers gets you a context, particularly, (and obviously) with renal disease being a concern with Indigenous health population.
Ken: In this little community of Alice Springs, we have that scenario as well, we share or our files gets shared with the state sector hospital system and also the private health clinics. What's good about this is if you have a patient care plan, then you're able to ask about the patient care plan ‘OK, how is your plan looking? I hear that this clinic over here has developed a plan for you, are you still happy with this plan?’ It certainly does give that client or patient the ownership of their plan. So you know they are starting eating healthier, so you start monitoring that or where it's been referred to, e.g. a nutritionist, and look at the food consumption to help with the condition.
So yes, sharing a records like that is fantastic, with the patient care plan.
Tim: That's really good, and then clearly really important, and if the way we're using a health record is engaging patients actively in their care, and any other way we can do that, that's going to be much more successful in terms of the management in terms of the patient achieving what they want to manage.
And something that's appropriate, like someone might not be able to go to gym but do you explain ‘look you can get these exercise by going for a walk and that's the kind of activity we want you to do.’, so we're going to find a realistic.
Absolutely, and I think what’s really important is that the plans are going to work in that person's context. It's not a one size fits all approach.
If we move on to the next slide, prevention, early detection and follow-up, Justin, you're going to start off.
So the role of GPs is crucial post diagnosis and discussion of management options with any cancer, but particularly with prostate cancer. With any patient, it's important that we do it in a quiet setting, where obviously observed and understand where the patients coming from, particularly from a health literacy point of view. You have to make a positive diagnosis with a PSA, and yes, we have two readings that is positive, and then we talk about the importance of the next step. Through a discussion about needing to go to a urologist, possibly a biopsy and then some of the technical language with the Gleason Score. That’s important because that will actually determine treatment. So explaining a positive diagnosis, it's really important to understand what language is used and again, using pictorial diagrams.
I guess, from a patient cantered approach may be looking at some enablers and barriers of care and optimal care pathways. The prostate cancer path by a revised as we speak. Given it's been many years since the first iteration of the OCP, once a GP does get a positive diagnosis we are expected to inform the patient of the result, a positive result within four weeks.
Throwing back to Ken and Tim, is four weeks a barrier as sometimes a bit difficult to actually get a patient back to review with a positive diagnosis with a high PSA.
Working with other medical services, most of them have liaison officers or health promotion. It's engaging with them to say ‘Hey, look, we've got this patient, could you help win this area?’ The outcome is that the patient gets the best kind of quality service from whichever organization, but working together, they get the best treatment on either side. So, it's really working together in collaboration to come up with the best plan of treatment for the patient. And that takes a little bit of talking but we want to make sure that they're getting the best sort of servers on both sides.
So, I guess follow-up scenario just comes to mind, where, let's say a patient, by the name of David, he's had a PSA, had the second test, it is high as well. And obviously, there is a high suspicion of prostate cancer. There is attempt by the health services, the nurses, and other health system to contact the patient, but he's not answering.
But what happens, if, let's say, David’s big brother comes to your clinic, is their ability to somehow help with David come see me, obviously trying to protect privacy ‘Do you mind getting David to come and see me as something urgent has come up?’ Is that actually within scope or is that something that needs family networks to get patients?
In fact, that's actually quite appropriate. Look I also look after the rest of the family and I need to see this other family member too and have been trying to track him down, and I can't do it, can I get your help to do this? So let's just ask them for help or did he changed his number or something? Could I get a new number? So that's an appropriate way to sort of engage and reconnect.
And the Aboriginal health workers will often be really useful, they often know what's happening for people in and where they might be. Even the receptionists and drivers, we have had transport drivers track people down in the past as well, just because they're so highly regarded in the community. So I think, come those links into the community, including where appropriate and protecting confidentiality, relatives - I think that as he changed his number, do you know what is new number is really nice as well. Again, I was thinking that using the people in the service for doing that.
As GPS, we stand with our feet in two worlds. One is explaining and translating from medical speak to everyday speak, and for many Aboriginal Torres Strait Islander patients, English will be their third or fourth language in the territory quite often. There's little translating to be done there, but explaining things like Gleason scores and explaining what those sorts of things mean, and finding out what people understand about the diagnosis once they have been informed and giving them time to have questions then and also later on.
Quite often people will have cultural explanations that we may not be familiar with for particular diagnoses or particular sets of symptoms. And sometimes that can be a helpful thing to ask - what are the explanations that your parents or grandparents might have had for these symptoms or this diagnosis? Who are the sorts of people who you'd like to get involved in care? Often, that's sort of approach, means that you can really tailor care very well, it's not a rejection of what we're offering, but making sure that they're accompanied in that care by people in systems that they feel comfortable with.
Yeah, that's right Dr Tim, this is where you are you more than just the communicator of this, you’re the animator of how this communication happens. So you might say ‘Well, how do people talk about diabetes?’ What’s the actual nuances? This is where if you start using some of the actual Aboriginal language nuances, then others would go ‘Oh I've got that and I'm going down this track now. What do I need to understand?’ So, this is where using the actual Aboriginal nuances pronunciation of some of the illnesses for that particular region gives more communal understanding of what it is, and your patients will have an idea about that.
The next slide shows some of the resources. On the right checking for cancer and on the left what to expect. These are patient resources designed to help us explain to people the sorts of treatments and the sorts of care that they can expect, and the sorts of pathways that will go down. This is a useful example of what Kim was talking about in terms of visual guides as well.
So now moving on to surveillance. In the Optimal Care Pathway for Aboriginal Torres Strait Islander people, they describe four components of survivorship and that's the prevention of recurrence and new cancers as well as late effects, surveillance for cancer recurrence or second cancers so people can get other cancers as well, and screening assessment for medical and psychosocial late effects, interventions to deal with the consequences of cancer and cancer treatment. So, often side effects are common inside managing those and the symptoms, distress, and the practical issues of dealing with cancer, and the co-ordination of care between all providers to ensure the patient's needs are met - sometimes we get help with that from the primary health network funding for what used to be called co-ordinated care and supplementary services, which are contracted out to different organization now, so your local PHNs will say what's available in your area.
So that's important in terms of care for the individual, guiding them through the treatment pathway, and following them up, looking for cancer recurrence after the treatment pathway. But also providing the whole range of preventive health care and care for other illnesses that they may well have aside from that. So we are still providing immunizations and other screening measures which have got to be important to their care.
Just on regards to supportive management, and obviously your patient will go through different platforms of treatment for prostate cancer, but in regards to a GP role, I've seen many patients that end up actually not being monitored for cardiovascular risk factors. And the other one that comes to mind, is diabetes and osteoporosis. Particularly for prostate cancer we may end up saying patients with osteoporosis, particularly if they are on hormone therapy, and the fact that many of these patients post treatment, their risk of cholesterol going up diabetes and heart risk goes up. So these are important facets of care for GPs with patients with prostate cancer.
That's a really important point because it’s easy to just focus on the cancer diagnosis, and forget about those other things. That may be a really useful thing we can do with our electronic health records is that as well as tracking cancer care, we can add in reminders for ourselves - have we check the cardiovascular risk profile, do they already have cardiovascular disease, and we need to manage that at the same time as the cancer. So those are going to be important in terms of providing holistic medical care.
We're emphasizing the patient care plan, and part of the patient care plan is not one way. It’s more or less like saying ‘You and I are committed on this journey for your own health. So you and I have got to work on this together, which means you're going to do a little bit of work and I’ve gotta do a little bit of work, and we work together.’ So it's emphasising that we’re a team in your journey and these are the things that you got to monitor as well. You do that. I'll check it. Then it's like, not rewarding, but acknowledging that ‘Ooh, you've done really well here, so whatever you will do, and keep it up.’ So, you've got a really good working relationship that helps focus on that individual taking on responsibility as well.
Tim: Yeah that's a really good point, and encouraging people as well because the likelihood is that they are doing things well and so finding room to encourage that, people really respond to that.
The other important thing I've become really aware of as well is how often the person with cancer goes through all of this, and they sort of come to terms with that quite often. But family members often really struggle because they have less control over the whole process. We were family doctors after all, so it's really important that we take note of what it's like for family members. Particularly whether the patient is maintaining connection to the family, what the communication with them is like, and also whether they're connected to other members in the community, whether they're able to meet that community obligations and cultural obligations. Because, being connected to family and community, and connection to culture is a protective feature that will allow people to maintain their strengths and maintain their well-being as they go through cancer treatment.
Ken is there anything more you'd like to say?
It allows for the patient to easily explain look I can't participate in that or can’t do because I’m under doctor’s orders. The term used ‘under doctor’s orders’ means that I’m under the doctor’s instructions to do things right for myself, and then everybody else understands that because there is a level of care plan in place. So it helps the patient to so warn off any sort of temptation to have a party or having a drink. It gives them an excuse because the doctor said this and it gives them a bit more power to say ‘no’.
Tim: So there's no negotiation to be had there about what are the things that are less ideal, e.g. what are the cultural connections like maybe ceremony that people need to be involved in, sorry business they need to be involved in, that we won’t necessarily know about but is important to patients. One of the things that's going to be important is allowing people to live the life they want to live as they go through this. So, that's not partying all hours, probably though I guess if people want to do that, we can’t stop them, but also maintaining these healthy connections that are going to be the things that keep going through difficult times.
Yep, that's right, and having ‘my doctor said this, gives them some really good positioning to say ‘no’ to a lot of other stuff. Otherwise it’s difficult to say no in a lot aspects, but saying not for that night to help my condition, I can't do that and people understand that.
Tim: There's been a real theme to what you've been saying all the way through, Ken, that this is about a partnership between the doctor and the patient, and working through this all the way together.
That won't be news for people working in primary care. That's the way we aim to work anyway, but I think being explicit about that can be really useful, and sometimes even, explicit with the patient saying ‘Oh, this is really difficult diagnosis in time. We're going to work together all the way through this.’ can be really helpful for patients to hear.
On the next slide - this is the resources from the Optimal Care Pathway. So the optimal Care Pathways have the full guideline, and then you have a quick reference guide, which sort of summarizes it for quick reference - so there's an image of that over on the right of your screen.
Also worth remembering that there are relevant tumour specific optimal care pathways. So those are the pathways for ideal care for each of a specific group of tumours, so prostate cancer is one of those and then, so the Optimal Care Pathway for Aboriginal and Torres Strait Islander people can be used with any or all of those different pathways. So that, ideally, we're using them together to make sure that our Aboriginal and Torres Strait Islander people are really engaged in their care and following it through their cancer all the way at what's a difficult time for people. These are the other useful resources. There’s the links for the full guide and for the quick reference guide, and the information for health professionals. We also have to mention the National Guide to Preventive Health Assessment for Aboriginal Torres Strait Islander people, now it's in third edition - We often just refer to that as the national guide - that's like the red book for and Torres Strait Islander people about the preventive health interventions that are recommended for Aboriginal Torres Strait Islander people and, essentially, forms the evidence base for the interventions that are most useful in an Aboriginal health assessment. That guideline is there and was jointly produced by the RACGP and NACCHO - National Aboriginal Community Controlled Health Organization.
There are the links to the statistics presented today, from the AIHW and the Engaging Aboriginal and Torres Strait Islander Communities in Prostate Cancer Health Care Programs. Is there anything you’d like to add about the source for those stats Justin?
Yeah, I think two important documents, and for those who enjoy a little bit of a weekend rate, particularly the PCFA report, there’s a lot of work to do in this area and supporting First Nations health people in this space and just highlights there are things to do over the next few years.
I do think it's important that fact that incidence is the same or lower for many cancers for Aboriginal Torres Strait Islander people, but the mortality rates are higher and screening rates are often lower for Aboriginal Torres Strait Islander people. That puts the ball firmly in the health system court I think for thinking ‘OK what can we do to ensure that the mortality rates are the same?’ because they should be the same, and what can we do to ensure that we're diagnosing cancer as early as possible, to make sure those mortality rates do come down on. That's often about making sure that our health services and the health systems are actually welcoming and engaging for Aboriginal and Torres Strait Islander people to come to. Would, you add anything to that, Ken?
I'm really encouraged regards to what I'm hearing. It's absolutely fantastic and yeah we're on this journey together.
This is a reiteration of the learning outcomes. So hopefully we've covered all of those.
We hope you got a lot out of this webinar. We certainly did. So, thank you for your attendance and again thank you Justin, Tim and Ken.