Welcome to the optimal care pathways for Aboriginal and Torres Strait Islander Health People with Cancer webinar focusing on Bough 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.
Now we'll start the webinar with the introduction of today's presenters. Today we are joined by Professor Gail Garvey, a Kamilaroi woman from NSW and Senior Principal Research Fellow| Wellbeing and Preventable Chronic Diseases Division at Menzies School of Health Research. She currently leads a large research program with a focus on improving cancer outcomes for Aboriginal and Torres Strait Islander people. She has an impressive record in building Indigenous research capacity and a strong track record of research translation into policy and practice. Professor Garvey plays an important leadership role in Indigenous cancer research nationally and she is a member of Cancer Australia’s Leadership Group on Aboriginal and Torres Strait Islander Cancer Control. She has established an international collaborative research program of work in cancer and Indigenous peoples with the International Agency for Research on Cancer, an intergovernmental agency forming part of the World Health Organization of the United Nations.
We're also joined by Dr Timothy Senior, who works as a GP at Tharawal Aboriginal Medical Service and Medical Advisor, RACGP Aboriginal and Torres Strait Islander Health
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 crowdfunded 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.
Now Dr Timothy Senior will kick start the webinar. Thank you Tim.
Thank you very much Daniela. Good afternoon everyone, I hope you're all staying well in these strange times and that you're keeping all your patients well. These are the learning outcomes for this webinar, which is educational speak for what we hope to get out of the next hour or so. So that by the end of this webinar, we’ll understand the key optimal care pathways themes and principles for providing effective culturally responsive healthcare for Aboriginal and Torres Strait Islander people with cancer.
We'll identify the risk factors for bowel cancer. We'll discuss some of the barriers to effective implementation of screening, diagnosis, 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.
Thank you Tim, and I'll get started and introduce the Optimal Care Pathways, and I'd like to acknowledge the traditional owners of the respective lands in which we're joining this webinar today and pay respects to elders past and present, and to any Aboriginal or Torres Strait Islander person on this webinar.
So, cancer is the leading cause of burden of disease for Aboriginal and Torres Strait Islander people and you may have read an article in the Sydney Morning Herald that reported that cancer has actually overtaken circulatory disease as a leading cause of death for Aboriginal and Torres Strait Islander people in New South Wales and Victoria. It's actually the leading cause of death for Aboriginal and Torres Strait Islander people in Queensland as well.
While Australia's cancer survival rates for the general population are among the best in the world, Aboriginal and Torres Strait Islander people continue to experience a different pattern of cancer incidence, and experienced significant disparities in cancer outcomes compared to non-Indigenous Australians. Whilst the pathway for any cancer patients undergoing a diagnosis and treatment for cancer is complex, and usually involves multiple healthcare providers across a range of settings, for Aboriginal and Torres Strait Islander people this journey is often much more complex, and it's due to arrange of factors and that are inter-related and complex, and some of those we're going to discuss with you today.
But more specifically, the Optimal Care Pathway for Aboriginal and Torres Strait Islander people with cancer has been developed with the aim of reducing those disparities, and improving outcomes and the experiences of cancer for our mob. The OCP for Aboriginal and Torres Strait Islander people with cancer, its purpose is to complement the best practice information that's been provided around those tumours specific pathways. For example, those that have been developed for lung cancer, breast cancer, and so forth. So, the purpose of these specific ones to facilitate the delivery of culturally safe and competent care, and for health services to be effective to provide services to Aboriginal and Torres Strait Islander people. They've got to operate in ways that show both an understanding and respect of Aboriginal and Torres Strait Islander people with cancer, but also have an understanding of how they can achieve the most optimal cancer care. And this document is really important in doing that. There are seven steps to the Aboriginal and Torres Strait Islander OCP from prevention and early detection to end of life care.
So overall cancer incidence is just slightly higher for Aboriginal and Torres Strait Islander people in comparison to non-Indigenous Australians and I'll hand it back over to Tim.
Yeah, so I think we see for many cancers, we can see that lung cancers right at the top there, and that's primarily driven by smoking, and we can see that the incidence of cancer from across most cancers is actually not higher for Aboriginal and Torres Strait Islander people than non-Indigenous Australians. I think that's important, where there are higher incidence is that's often related to modifiable risk factors such as smoking, alcohol consumption, hepatitis B infection. But, also importantly, we know that for many of these cancers with a screening program there’s lower participation in the screening program for Aboriginal and Torres Strait Islander patients. I think the importance of that, is that, that's firmly in the work of the health system and ourselves as health professionals, to enable people to participate in the screening programs in order to improve survival rates from cancer.
If we move on to the next slide, we actually see that although the incidence is the same, the mortality rates for the many of the cancers are much higher than they are for non-Indigenous people. So there's a range of reasons for that, to some extent it will be due to less participation in screening for screening preventable cancers so that diagnosis occurs at a later stage.
For some of it the access to healthcare maybe less good, that's particularly true in rural and remote areas due to geographic factors, but even where I am, in Campbelltown, where the service is five minutes from the hospital, routinely people don't like attending the hospital. I think certainly many of my patients have had bad experiences in the hospital system, and so may delay getting treatment for any cancer or the follow-ups that are available. So, some of those are some of the reasons why mortality rates may be maybe higher, and again, I think the really important message for us as health professionals, is that this is not inevitable. This is all entirely preventable.
If we, as health professionals, and as a health system, are able to have a system where people want to participate in screening programs and prevention programs, and throughout treatment that they feel that the health system is going to be accessible for them, and it's going to treat them fairly. So, I think it puts the ball firmly in the court of health system and health professional in actually knowing that we have it within our ability to improve the mortality rates for cancer for Aboriginal and Torres Strait Islander Australians.
The next slide actually demonstrates that the mortality gap is increasing. So, that's between 1998 and 2016, and you can see that the mortality for non-Indigenous Australians is decreasing. We're getting better at that, but that's not the case for Aboriginal Torres Strait Islander people. So we're going backwards from where we would want to for that.
And then, on the next slide comparing survive year. Yeah, I think these are five year cancer survival rates. This shows us that 48% of Aboriginal Torres Strait Islander people with cancer, in general, survive five years but that's 59% for non-Indigenous. So again, there is a gap here that we should be able to do something about. GPs are able to be very much involved in this care and in cancer care and we'll talk about exactly the sort of roles that GPS have in doing this, and it goes right from early in relationship through to screening, navigating, treatment, and on through to cancer survivorship.
I don't know if there's anything you wanted to add, Gail, about the, the statistics around incidence and mortality there.
Thanks Tim. The only thing that I will add is that incidence is only slightly higher but when we look at mortality the gap is significantly different - 40% difference in mortality and increased mortality for Aboriginal and Torres Strait Islander people.
So it's once Aboriginal and Torres Strait Islander people are diagnosed with cancer, the system is failing Aboriginal and Torres Strait Islander people in getting those same survival outcomes as non-Indigenous people. Now, taking into consideration that Aboriginal and Torres Strait Islander people are often diagnosed at a later stage of the cancer diagnosis. But from research that our team and others have done, when we compare an Indigenous person in a non-Indigenous person at the same cancer stage, same cancer time, same geographical area, Aboriginal and Torres Strait Islander people receive less treatment. If they receive surgery for example, they usually receive it later and when we look at adherence to clinical guidelines, Aboriginal and Torres Strait Islander people, there's less adherence to clinical guidelines. So, I think primary health care and health systems have a big role to play in changing those cancer outcomes for Aboriginal and Torres Strait Islander people.
Thank you. That's really interesting, it would be fascinating to see if we audited our own patients whether we would find that we were following guideline based care less often as well.
It leads us nicely onto the Optimal Care Pathways and general practice where essentially for different sorts of cancer, Cancer Australia have produced guidelines about the best cancer care for those particular specific tumour types, and they've also produced the Optimal Care Pathway for Aboriginal Torres Strait Islander people with cancer. Those provide guidance on what the optimal care is and for us, combining those pieces of guidance into providing optimal cancer care for our particular Aboriginal and Torres Strait Islander patients with cancer, is the sort of the trick of the job, and I think, the important role that we have as GPs and health professionals working in primary care, because we do have intentionally that long standing relationship over time with our patients, and by its nature, cancer diagnosis, treatment and follow-up is a long term thing that we're ideally set up to provide.
It's worth looking at one particular type of cancer and we're going look at bowel cancer today. The Optimal Care Pathway for Aboriginal and Torres Strait Islander people applies across a whole range of different cancers, so we can take some principles from that by looking at the specifics of bowel cancer. If we start at the position pre-diagnosis of screening people through the National Bowel Cancer Screening Program, Gail, what does this tell us?
So today's presentation as you've mentioned, is about the National Bowel Cancer Screening Program but I just want to come back briefly to the point that you mentioned before. So, Australia has three national population based cancer screening programs, i.e. the best screen program, the cervical screening, and the bowel screening, and in each of those national screening programs Aboriginal and Torres Strait Islander people are less likely to participate in those. Cervical screening for example, Aboriginal and Torres Strait Islander people, from what we know, have the participation rate around 34% in comparison to 56% for non-Indigenous women. So primary health care can play a big role in changing the cancer outcomes.
So now let's focus on the bowel screening program and so all Australians aged 50 to 74 get invited to participate in this free testing kit, and you're invited to screen every two years and to participate in this program when have your 50th birthday, you'll receive a letter of invite from the Commonwealth screening program to complete the screening test. It's posted to you at home, and how you're identified is that the names and addresses are obtained for potential participants from Medicare and the Department of Vet Affairs. So, at this point in time, the screening program doesn't know who is Indigenous or not Indigenous. It's only after you receive the test and to complete the form and self-identify as Aboriginal and Torres Strait Islander you send that kit back, is when we actually know whether you’re an Indigenous participant or not on that national bowel screening program. So, keeping that context in mind the next graph and you'll see from here that Aboriginal and Torres Strait Islander people are less likely to participate in that usual care pathway via the mail out system than non-Indigenous people.
I guess the program has undergone some significant change over recent years, where now you'll probably see a lot more ads on the TV, on the radio and in various forums presenting and promoting the bowel screening program, because whilst Indigenous participation was low, so was the overall general Australian population.
If we can go to the next slide, there are a number of reasons why Aboriginal and Torres Strait Islander participation was so low in this particular program, and some of these are pretty obvious, but we held some national consultation with Aboriginal and Torres Strait Islander people. Like I said, it was fairly obvious from the outset that there were some obvious practical, structural barriers at the way the program was offered were all issues for Aboriginal and Torres Strait Islander people in participating in that program. Many of these barriers are also common for non-Indigenous people, but there are some that were very specific to Indigenous people.
I guess, one of the biggest barriers is that Aboriginal and Torres Strait people didn't understand what the test was for and why it was important. As I said before, it’s only recently that there's been an increase promotion around bowel screening compared to other national screening program. So, there's been a big increase particularly over the last year or so. The kit, as it was, is also delivered through the mail and that could be another barrier, and information in the original kit that was delivered was overwhelming. The font was quite small and it seemed quite technical. So a common response that we heard from many other Aboriginal and Torres Strait Islander people that we spoke to said “Oh, yeah, I got this thing from the government, you know, I just throw it in the bin, you know?”, and they weren't often even opened to explore further or find out more information.
There are also social and cultural factors around the test - shame about talking about cancer, and given the high mortality rates that Tim presented earlier, and this is about cancer screening program. Often resulted in death so there was fear, there was uncertainty if I did this test does that mean I’ve got cancer. So that was a barrier. A barrier was even talking to other family members and health professionals about cancer. And then, you know, there was also a certain amount of people feeling uncomfortable about talking about the bowels in general, and potentially, you know, poo samples.
The national program also, for reasons of keeping the kit as best it can - as the samples are kept in the fridge, this was a barrier is seen by many Aboriginal and Torres Strait Islander people because they didn't understand how big the samples were, and it's in fact about the size of a small grain of rice. So there was a lack of understanding about how much or how big or large the sample needed to be and keeping it in the fridge with other food items, having a decent fridge that could run and operate these were all issues that Aboriginal and Torres Strait Islander people faced in undertaking the National bout Screening Program.
So, what we actually did after having these national conversations, we worked very closely with the Commonwealth Department of Health in particular the National Bowel Cancer Screening Program, to actually try and overcome those barriers. And, to do that, we developed, in partnership with the Commonwealth, the alternate pathway. So we conducted a pilot over 12 months, and what we did was assess if giving out the kits, via probably healthcare service centres would increase participation for Aboriginal and Torres Strait Islander people in this national program. So, this was quite a significant change in the delivery of that program. We ended up enrolling 47 primary health care centres across Australia to participate in that program. Next slide.
Whilst I can't give the details about the success of that because we're currently evaluating that program and providing that report to the Commonwealth, we know that program has worked because there has been an increase in screening by Aboriginal and Torres Strait Islander people in this national program. The reasons why it has worked is that it was promoted and delivered the primary health care centres, and primary health centre staff. As Tim said, primary health centre staff and Aboriginal health workers are trusted by Aboriginal and Torres Strait Islander peoples and communities, and there was that personal approach and there was time spent explaining why the kit is important, showing the kit to the patient and explaining the instructions.
There are also options that some of the primary health care centres offered, that you could do the tests now and we can store it here, and we can actually post it back for you.
One of the other things that the team and I participated in was a whole redesign of the National Bowel Cancer Screening kit and the information that was in it. So, this was not only for Aboriginal and Torres Strait Islander people but for all Australians. So, the kit was substantially revised, as were the instructions in it.
Other reasons why it worked and law bowel screening improved in regards to participation for Aboriginal people, was that there was support provided. So, there was material, there was information, both the patients, but also health professionals and in having discussions with health professionals in the early days, it was like “Oh, I'm not sure how to broach the topic with Aboriginal patients, particularly if I'm a male GP and I have to talk to a female patient about participating in bowel screening”. And I don't know if Tim wants to add something in a moment about the gender and having these sort of sensitive discussions.
I guess one of the things was making bowel cancer screening not a big deal. It was just a part of your regular check-up and something that we have a discussion about. So, these were some of the reasons why the program actually worked.
Did you want me to say something about the gender now? Because it's a really important point, and I find it can be quite variable. So where I work, it's often impossible to tell in advance what people would say, and that in some more remote communities, there may be more predictability about that. Essentially just offer people an option and say “Look we're just going to be talking about the sample and the cancer. Would you feel more comfortable discussing that with someone else, may be discussing with a female GP or discussing with one of our health workers?” Then watching closely the answer as with some people, you can tell whether they're comfortable in that, and some people might say yes, but not be comfortable in that, so “I'll tell you what? I'll, I'll get one of our health works to have a chat with you?”, and you sort of see the relief on their face.
So, I think asking for permission to discuss that is the often the way that I've done that, and not needing to assume that people will be comfortable or uncomfortable. But knowing that it's not a compulsory discussion with me as a male GP, and I think that will be the same for female GPs working with male patients as well, and our Aboriginal health workers are really important guide around that and they’re always able to get me out of trouble. Willing to give me advice on asking that sort of question, and asking patients perhaps before I see them about how comfortable are so, I really, really appreciate their expertise on this, too. Thanks Gail.
This is again on screening. I've had quite a few patients over that over time come to ask me about what's this thing I've got through the mail? Including one person who asked me and then after me explaining it, he then went and popped into the toilet next door to my consultation room and did his sample there and then. So I view that is success for screening.
I think it's one of our roles, as a GPs we tend to be trusted and primary health care professionals tend to be trusted having seen us before they got the relationships. So the guidance that we can give about raising screening and what it does, what it's for and the pros and cons really helps people make the decision that they're happy with about the reasons for screening and how they want to approach screening.
This is information from the Cancer Council which is tailored information about what to expect, checking for cancer and what to expect if a diagnosis is made. That sort of flagging the potential journey can be really helpful for people in the information that they've had. Building that trust is going to be really important because people will come back. And if they feel that they can ask us questions, if they can feel that we're going to be walking with them and by their side on what's potentially a difficult and frightening journey in the health service, whether or not you have cancer, like a colonoscopy is a frightening thing, then they’re more likely to do that, because they’ll feel like they’ve got an ally in the health system, navigating people through slightly strange procedures.
And, Tim, I might just add onto that… when we spoke to Aboriginal and Torres Strait Islander patients they wanted to talk about bowel screening with a primary healthcare staff. So, I think it's just, you know, trying to take out that unease in having the conversation, but you know, Aboriginal and Torres Strait Islander people want to have a discussion about this, they wanted to be there for their families and their communities.
So, at the end of this, the last slide shows a number of resources for health professionals and promotional materials that you can actually get from the National Bowel Cancer Screening Program that are Aboriginal and Torres Strait Islander specific, and for health professionals and GPS, how to have these conversations with your Aboriginal and Torres Strait Islander patients. I encourage you to have a look at those.
That's really important. Many of our patients, they're not coming from a position of no knowledge or a blank page. They've often seen friends or relatives go through these things themselves, so they will have knowledge and questions, and do expect us to be able to talk to them about it and answer the questions that they have, be given opportunity to do that. People want to be well.
The importance about the diagnosis and presentation, which will often happen for us and in general practice. So again, the important role of us is as being trusted healthcare professionals, and in the latest Aboriginal and Torres Strait Islander Health survey, GP's came out as being highly trusted by our Aboriginal and Torres Strait Islander patients. So that's a really good starting point, and being able to discuss significance of symptoms and the significance of seeking help for symptoms, as well as the importance of screening that we've talked about. And those are clearly important roles.
The cross-cultural communication and the vast majority of consultations between an Aboriginal or Torres Strait Islander person and health care professional, the vast majority of those are cross-cultural, and that sense of being able to ask: OK, so what sorts of things would you believe work for this? What sorts of explanations are therefore for these symptoms? What sorts of things would your grandparents have said about these?, can ways of getting at people's cultural expectations and ideas. It's much more subtle and fluid then just the sort of stereotypical people from this background believe this and don't want you to look in their eyes. It's much more subtle and fluid and much more interesting than that.
Think often, it's important for us to acknowledge that the complexity of things, the health system is complex, and that can be really difficult to navigate just for everyone, and so people appreciate help around that and guidance around who you will see first and what to expect there and what maybe the onward referral and the sorts of questions or procedures they might go through. It's also complex because many of our patients will have other comorbidities too. So it's rare that we're dealing with just a single pathology, and so being able to help prioritize those, for us symptoms that are perhaps significant for cancer, would be quite high priority, but we couldn't assume that that would be the case for the patients who might have plenty of other things going on in their life. So the importance of, of communications and navigating a safe plan to get symptoms of cancer assessed early is going to be very important.
Again, often our patients have had previous bad experiences in the health service, and so being willing to advocate on behalf within the health system and guide them through and say, wherever possible we'll make sure that this person has a good experience in the health system. Again the Optimal Care Pathways can help in doing that, in setting up a framework for optimal care looks like for our Aboriginal and Torres Strait Islander patients.
This next slide is around supportive care needs and assessment, and psychosocial care is also important but it's often overlooked in someone's cancer care journey and, in fact, in an Aboriginal and Torres Strait Islander patient's journey, whether it's cancer or some other illness or disease.
Psychological and psychosocial care indicators include information around what's the patient's experience, the sorts of things that Tim was just talking about, but also including the emotional and psychological and practical day-to-day demands of the effects of cancer on Aboriginal and Torres Strait Islander patients, but also, the carers and their loved ones. Screening for supportive care needs, they are an integral part of the optimal cancer care pathways, both the Aboriginal and Torres Strait armed a specific one, but also the tumour specific OCPs. It’s. It’s recommended in the OCPs that the support needs are measured or assessed at every step of the pathway, and the patient should be referred to appropriate health professionals as required, whether it's a social worker and Aboriginal health worker, or a psychologist, or just to a patient transport scheme, for example.
So, Indigenous cancer patients often present, as Tim has already mentioned, with complex health and well-being issues. So, Aboriginal and Torres Strait Islander people with cancer are more likely to have diabetes, a kidney and cardiovascular disease. So, they don't often just come with cancer. So, very complex patients with complex health and well-being issues. There are also cultural differences in Indigenous people's understanding and perceptions of cancer, about what information they want and who they want that information given to, whether it's them directly as a patient or whether it's the carer or someone else. Also, the decision making style of Aboriginal and Torres Strait Islander people may also be different. They may not want to make that decision right there, and then they might want to go away and have consultation with other family members, and then come back to you with what that decision may be. In doing so, they may bring other Aboriginal and Torres Strait Islander or family members or carers with them.
The way Aboriginal and Torres Strait Islander people also cope with the cancer and the illness may also be different to non-Indigenous peoples because it's not so much about the individual with cancer, it’s more about the impact that the cancer diagnosis may have on the family and their loved ones and then the broader community. So, it's not taken from an individual's perspective, they tend to be more concerned about others rather than themselves. Which we've seen quite different between Indigenous and non-Indigenous cancer patients.
Accurate measurement is really important if you're going to assess the supportive care needs or psychosocial support, and accurate measurement is really important because otherwise you're not getting a clear picture of what components of support that they need, and the extent to what they want that support needs. So, really supportive care is really the patient telling you what need and what help they would like.
So, in this slide, you can see, you know, this is a specific tool that we developed for Aboriginal and Torres Strait Islander people with cancer. Whilst it's being used in a cancer care setting, in a tertiary care setting, it can also be used in a primary healthcare setting and not only for cancer, but for other chronic diseases and illnesses, as well. So, in the last month, or, you know, since you last saw that patient, did you need any help with physical pain? And if the patient just says no, well then they obviously don't need help, and you go on to the next question, but they say yes, the thing is, just say “Well are you satisfied with the help you have received? Or do you need a little more? Do you need a lot more help with that?” Then that might result in referring them to a pain clinic or a physiotherapist or an occupational therapists to help support if they're having problems moving and getting a lot of pain from that.
So supportive care needs assessment are really important because that gives a patient's perspective on how much support they actually want with the things that are impacting on them and the cancer diagnosis. So the Supportive Care Needs Assessment tool, I have a link to their website there, and you can access and download that too. Again, it can be used in a primary health care setting and it can be adapted not only to cancer patients, but for all of your patients with chronic disease.
Just on the supportive care needs assessment, I think that's really helpful for us as GPs and primary care practitioners to know that that may well have been done where it's available, because being able to see the results of that could really enhance the care that we offer.
In the Optimal Care Pathways for Aboriginal and Torres Strait Islander people, the link is at the end of the presentation. Page 51 and 52 set out models around survivorship which is the sort of the idea of you've gone through the treatment for the cancer, and you’ve survived the cancer, and now it’s the ongoing monitoring and surveillance for that. They set out these four principles of survivorship which can be a useful framework for thinking about, what happens after cancer treatment.
And so, we're obviously looking to prevent recurrent cancer and new cancers and late effects from the cancer diagnosis, or from the treatment for cancer, surveillance for cancer recurrence or second cancers, and screening and assessment for medical and psychosocial late effects. So, that would include late effects from things like radiotherapy but also those psychosocial effects of having gone through a serious diagnosis and what that leaves you with. For GPS, in terms of that, I also think about our normal preventive health measures. So immunizations will be important, the recommended screening for conditions that aren't related to that cancer, and so as GPS will be the people who are responsible for remembering to do all that, because that's within our specialty.
Next up is interventions to deal with the consequences of cancer and cancer treatments, so there’s other symptoms, distress, and the practical issues, including any sort of disability that arises as a result of that. I think it's important with regards to this as well, to be aware of the experiences of many of our Aboriginal Torres Strait Islander patients in the experiences of adverse life events. So this becomes another additional one to that, and how we help people through that. Then again there's going to be the important role of co-ordination of care between many different health care providers to ensure that their needs are met, and that includes the needs that we're talking about earlier.
In the GPs role, I would add to this as well, that it's not just about the individual who's gone through cancer care. Quite often we see people who go through the pathway for the cancer treatment, and they go through OK on that, but their relatives, carers, and community are all affected by their journey through cancer and its treatment. So I think being aware, as family physicians, to what's been the effect on their family and loved ones on their carers, has the patient maintain contact with their family and their carers, have they are they maintaining contact with the community and culture is going to be really important for recovery and for long-term wellbeing during and following cancer treatment.
Sometimes it's just a simple issues such as the cancer kits been returned, have we followed up all the results? Do we know what they have? Have people who need it being referred for colonoscopy? So those sorts of basic measures, and again, our use of disease registers and our call and recall systems that we’re quite well used to is going to be important here. The communication between primary and secondary care, which is forever I think a bugbear in primary care, that's going to be really important here, as well.
Gail, is there anything you'd add around survivorship and after cancer care?
Yeah, thanks, Tim, Just two points briefly. I just want to come back to the point about the carers and other family members and of Aboriginal and Torres Strait Islander people, you know, with cancer. So, people who are affected by cancer aren't just the patient, it’s the broader sort of family in the carers and community as well. Whilst we don't know a lot about Aboriginal and Torres Strait Islander or the carers of Aboriginal and Torres Strait Islander people with cancer, and what the psychosocial support needs are, but we know from the general population that carers of people with cancer tend to have higher levels of psychological distress, higher levels of unmet support needs than the person with cancer. So, I think they’re an important part of, you know, the people who are affected by cancer, to pay particular attention to what the psychological support and support needs are. And, we're doing a project at the moment, where we're hoping to identify and get a better handle on the support and psychological needs of caregivers of Aboriginal and Torres Strait Islander people with cancer, whether they are Indigenous and non-Indigenous. So, there's a lot more work to be done in this area. In the meantime, while we're waiting for that research, to come out from a primary health care perspective, they’re conversations that you can actually start and start having
The only thing that I wanted to mention in regards to survivorship is really empowering people who are affected by cancer with information and knowledge, and also making sure that they are supported to manage the things that they actually face, so that they're able to support living well. If t cancer looks like it's coming back with a secondary cancer or other signs and symptoms that they're impaired with, that they have the knowledge to be able to come back and have those conversations. So I think that's an important part of the process, and so that involves everyone who is impacted by cancer to recognise and be empowered with those signs and symptoms and knowledge and information. So that, you know, we see a change in that survivorship stats that we saw in an earlier slide.
I think that's really important point, because so often in, healthcare in general, but particularly going through cancer care pathways, people tend to be told what they have to do often. And so, enabling people to make decisions that they're happy with and empower them to do that, I think, is going to be important. Is the other thing that made me realize that Gail, as well, is that they don't forget that, sometimes the carers of people will be children and the impact on children of having a parent or parental figure diagnosed with cancer can also be huge, and so we shouldn't forget that.
This slide goes through the useful resources. These are some of the resources that we've been referring to during the webinar. The first one is the Optimal Care Pathway for Aboriginal Torres Strait Islander people itself from Cancer Australia. One of the first ones we mentioned around making sure that the cancer care that we provide for any of the specific cancers is appropriate and optimal for our Aboriginal Torres Strait Islander patients.
And then there's tumour specific Optimal Care Pathways for a number of those different cancers that give guidance around those. In addition to the full document of the Optimal Care Pathway there’s the quick reference guide which summarizes it, as well as a quick reference guides for each of the tumour specific cancers. Soo those are useful as a, as a quick memory reminder.
All the preventive health guidelines, including cancer screening, are in the National Guide to preventive health assessment for Aboriginal and Torres Strait Islander people, currently at third edition, which was jointly published by NACCHO and the RACGP, I’d recommend you all referring to that one.
The bowel cancer screening for Indigenous people, the website, the Indigenous Bowel Screen, goes through some of those ideas that Gail was talking about earlier, and how it's important that we all try and enhance the screening in whatever way we can for bowel cancer, for Aboriginal and Torres Strait Islander patients.
The bottom one there is the ncsr.gov.au
Which is the National Cancer Screening Register and so you can go onto that about the national screening programs, including the National Bowel Screening Program, and you can get some information there.
Excellent, thank you, that's really important.
Gail, while people might be producing questions, do you have any final thoughts in summary?
No. I'd just like to thank the RACGP, yourselves and Daniela for an opportunity to talk about cancer in Aboriginal and Torres Strait Islander people and in this occasion, bowel cancer and bowel screening. You know, from the slides, it's quite clear that cancer has a big impact on our Aboriginal and Torres Strait Islander communities. Mortality is high, survival is low, and the role that primary health care and general practitioners can play is critically important to making a difference in those cancer outcomes. So I thank you for the opportunity of being able to present a little bit of information about that today.
Thank you very much for Gail. We certainly really appreciate your time and your expertise in this. Just speaking for myself, I’ve learnt heaps from what you've brought to this, so it's very much appreciated.
We've got a couple of questions coming through. What is the best approach to convince the patient if they refuse the test?
Well, obviously, you as the GP, Tim I'll leave that to you, but on the website there is some information that we provide for GPs having discussions with your patient about bowel screening and trying to encourage them. I think the thing is, it's trying to find the right words and having the conversation. Whilst a patient may not have a screen, or take the kit right there and then, I think it's important in having those follow up conversations about it to you. I think what I said before, sort of normalize screening a little bit more so its's not something that's so unique and specific but it's really important part of care and looking after yourself and your family. Some people may prefer to talk to perhaps either the nurse or the Aboriginal health worker about that or find out a little bit more information before they perhaps talk to the GP, where others may not be quite comfortable talking directly with the GP. So, I think one of the things that you can do is also talk to your co-workers and to other Aboriginal and Torres Strait Islander staff about what might work best.
But, you know, I think, just coming back and gently coming back to the conversation and making sure that you have that trust and build up that relationship, and utilize some of those resources to help have the conversation. That's what I would say, from a non-health professional perspective. So, Tim, over to you.
I guess my first thought is that people do have a right to say no to tests and treatments. So perhaps goal is not trying to persuade them to do what we want but trying to persuade them to allow them to come to a decision that they're comfortable with. That may not be today, that maybe over a series of months or even years that people can change their minds. I think I would not be thinking about what I’d say to them, but what I find out from them.
So, I'd start by asking questions sort of: ‘That's really interesting. What are the reasons that you don't feel like doing it?”
I think the more we understand about the way people are making decisions like that, then the more we understand more, we're able to put ourselves in their shoes to think ‘oh, yeah, I can see the reasoning for that’, and overcome those barriers if necessary. ‘So that that wasn't the case, then, would that change your mind?’ For some people, it may be and it becomes very difficult to guess what people's reasons are for that.
But if we work out we can never guess people's reasons, some of it might be sort of a yucky pooh factor. For some people it may be logistics, it may be worries about cost, it may be that they've got a relative who’s had a really bad experience with bowel cancer with colonoscopies. But if we find out the reason for that sometimes we can address that. So, I think the first step, along with finding out whether we're the right person to be discussing that with the patient, is to find out what their reasons are, because people will always have reasons which are rational, even if we disagree with them. That would be my first step in that.
We've got a question here for colonoscopy screening and patients on NOAC one of the new oral anticoagulants, also called directorial anticoagulants, do they have to be on them?
I think that's a very clinical question. My feeling would be to discuss that with the gastroenterologist doing the doing the procedure or if it's under aesthetic, the anaesthetist, because they will have specific guidelines about doing colonoscopy with patients who are on anticoagulation and on different versions of anticoagulation. It's possible it may increase the risk of getting a positive FOB test but I think that wouldn't be a reason - you'd be quite brave to get a positive FOB test and then ignore it on the basis that they are on anticoagulation. So, I think that may be worth discussing with your local specialist teams.
One last question for Gail, is the Bowel Cancer Screening Project continuing this year for Aboriginal and Torres Strait Islander patients?
Well, it's a good question and we're in discussions with the Commonwealth Department of Health and the National Bowel Cancer Screening Program. We're at the point of evaluating the current program, but we're in discussions, and we're hoping that it's, it's going to continue. That's all I can say at this point in time.
Fantastic and we have reached the end of our webinar. So thank you very much Gail and Tim for a great presentation, and everybody else for your questions and for taking the time to participate today.
Thank you very much, and you'll have a wonderful day.