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Role and potential of the National Broadband Network

CHAIR —I welcome everybody back to our afternoon session of the hearing today. I welcome the representative of the Leukaemia Foundation to today’s hearing. Although the committee does not require you to give evidence under oath, I should advise you that the hearing is a legal proceeding of the parliament and therefore has the same standing as proceedings of the respective houses. We have a written submission from you. Would you like to make some opening comments on that submission, and then we will go to a question-and-answer session?

Dr Williamson —Thank you to the inquiry for giving us the opportunity to present. We really appreciate that. Further to the points that we made in our submission, we are concerned that our infrastructure continues to match our needs. As an organisation that is a national not-for-profit organisation caring for people with any of the blood cancers and disorders—so that is all the leukaemias, lymphomas, myeloma and a number of related disorders—we have staff supporting our service in about 27 locations around Australia. The locations where we have our staff reflect the provision of services to people affected by blood cancers.

Our organisation provides a suite of services including information, education programs, emotional support, referral to expert services, accommodation, transport and practical assistance including financial assistance. We also have a national research program where we fund talented researchers with the best ideas to improve blood cancer treatment and develop novel approaches with a view of finding long-term cures. As an organisation we do not receive any ongoing government funding, although we have been the recipient of grants for particular projects. Our funds come from the Australian community—individuals, families, schools, community groups and the Australian business community—so we are always keen to make our dollars go as far as possible. Our geography is a huge challenge in us trying to meet our needs.

I would like to provide a little bit more background about what it is like for people affected by blood cancer so that you can understand the background of why a national broadband network is really an essential service for us. Most people diagnosed with a blood cancer are referred to a haematologist, an oncologist or a general physician for the development of a treatment plan to enable them to receive the most appropriate treatment. Some people with chronic or slowly developing forms of blood cancer can be successfully managed by their GP, but they still may need a regular annual check-up with a specialist. Any person diagnosed with an acute leukaemia or an aggressive lymphoma will have to attend a major treatment centre, and these are mostly in our capital cities or, in New South Wales, on the eastern seaboard in the bigger of our major centres outside the metropolitan area.

It is important that people with these conditions go to these specialised expert centres because not only is it important to have very accurate diagnosis but also the treatment they receive can only be effectively provided in these specialised centres. We know from experience, especially of people with lymphoma, that misdiagnosis or nondiagnosis for a long time delays treatment and, as with any cancer, the earlier the cancer is treated the better. But, in the case of blood cancers, most of them have treatments that are very particular to the type of blood cancer, so accurate and early diagnosis is very important.

Also, on the demographic front, as I think you would all be well aware, our population is changing. Currently our population is ageing, and we in the cancer sector are very aware that the cancer risk increases with ageing. This is also typical of people affected by blood cancer. They are usually older people. We also know that in the last two decades there has been a big movement of people to the eastern coastal belt of Australia—the sea-changers and the tree-changers—and also to the south-west corner of Western Australia, and this has some big implications for the delivery of our health services because these populations spread over huge areas are not necessarily conducive to forming centralised expert specialised services, which are the sorts of services that people with our cancers really need to access.

Also, a lot of people think that cancer is curable, and unfortunately it is not for a lot of cancer still. Overall, only about 60 per cent of people with blood cancers will survive five years. If we tally up all the blood cancers together, they are the second biggest cause of cancer death in Australia after lung cancer. It is just that they are usually presented to us separately as leukaemia deaths, lymphoma deaths and myeloma deaths, so we do not really see the impact of blood cancer.

We are trying to address the changes in the demographics by changing the way we provide services. We have always prided ourselves on providing very personalised services to address the needs of the people coming to us. However, with the rapid growth in the number of people being diagnosed, we are having to use electronic communications more and more to support people, to provide virtual services like virtual support groups and also for our education programs. But we are really hampered in this in regional and rural areas, especially for people who have only dial-up access to broadband. It is just not feasible to provide a video education program to those people.

Just to give you an idea of how things have grown, in about 2004, through a Commonwealth Department of Health and Ageing program, we set up an online forum called Talk Blood Cancer, which is a moderated forum for people affected by cancer. They can be patients, family and friends. This forum had a slow start, but we now have over 1,800 regular users—but 540 of those people joined in the last financial year, 2009-10. We are seeing a big increase in people using this forum as a means of accessing information wherever they live, whether they are in hospital or at home. Also, because it is an anonymous service, we are tapping into people who do not normally come to our face-to-face support groups, like men and young people.

It is a moderated forum. A whole suite of issues are addressed on it, including issues to do with treatment, side effects and psychosocial issues such as grief and loss, survivorship and fertility. People share their good news stories. They talk about their emotional journeys. We also have general discussion forums for families and friends and young adults. There are also 12 specific disease discussion groups. People usually want to be with a group of people who are going through the experience of having the same disease that they have.

We have also developed a whole lot of telephone forums. This is a free service. It is especially used by regional and rural patients and families. They and metropolitan patients can dial in for free. In 2009-10, we provided over 40 forums to people with chronic myeloid leukaemia, myeloma and acute myeloid leukaemia, as well as to bone marrow transplant patients, myeloid dysplasia patients, chronic lymphocytic leukaemia patients and lymphoma patients. We had just under 250 patients in those telephone forums. These are facilitated by our staff, usually in their own time. We will often have a guest expert, such as a haematologist, an exercise physiologist, a pharmacist or a naturopath. It depends on what the group wants.

We find that the forums enable the elderly and sick people with poor mobility to participate. Also, people in hospital dial in to the forums. When they cannot physically get to a support group, they can join us through the telephone support group. People are increasingly asking us—especially metropolitan people—where they can use Skype to connect to us so that they can save on their phone bill. If we had a well-developed and reliable NBN service or broadband service that everyone could access, including our rural and regional patients, it would be a fantastic way for us to expand these forums. If we also had the bandwidth and the technology to enable us to have graphical displays so that people could see what we are talking about on their computer at home it would also open up a whole lot more opportunities for education programs.

We also provide a lot of health professional education services. In 2009-10, 3,640 health professionals and community members attended over 330 education sessions. We have requests from community pharmacists, GPs and specialist haematology groups dealing with rare diseases who are struggling to improve knowledge about these conditions among their colleagues around the country. If we had the National Broadband Network through which we had access to good broadband then that would open up the opportunity for us to extend these services beyond the face-to-face services that we currently offer. I hope that you are gathering the impression that we think that it is an essential part of our infrastructure. We certainly believe that.

One other point that I wanted to make was in relation to consumer voice. We are one consumer organisation, but we have links to many other health consumer organisations. We are struggling to make our voice heard. I would like to commend to the inquiry the efforts of Cancer Australia in developing a national framework for consumer involvement. We are part of a network, the Consumers e-Health Alliance. The challenge that we are facing is that we are struggling to get the consumer voice heard in the discussions and planning for the implementation of personally controlled electronic health records. In the states at the service delivery level we usually have very good involvement of consumers in decision making. Cancer Australia is doing this really well at a federal level. But it would be a big improvement if Commonwealth agencies could learn from the efforts of Cancer Australia and engage consumers as respected partners in decision making about and the implementation of electronic health records and any other systems that might come along that involve electronic communications. There is a huge opportunity here, and we have not realised that yet.

CHAIR —Thanks very much. I have a few questions. I will start at the end on your point about a consumer voice. I want to clarify. You are saying that the problem area is the electronic health identifier project. Can you explain to me what is missing there or what you would like to see there?

Dr Williamson —There are several health consumer organisations. Some are cancer organisations; some are not. They mostly deal with chronic diseases. In about the middle of last year, we all got together because we wanted to organise ourselves so that we could present a united face to the network of organisations, both government and industry, that are involved in the implementation of the personally controlled electronic health record. It has been really difficult us to get a seat at the table. Belatedly, that is starting to happen, but it has taken a long time. It is very frustrating for us. We always feel that we are an afterthought. Everyone else is invited, but we are not. So we hear that it is happening and we chase down who is organising it so that we can have a presence. We have been complaining about it enough that we are now starting to be invited. But it is my impression is that the federal agencies struggle with consumer engagement. That is why I mentioned the work that Cancer Australia is doing, because they are doing a good job. Authorities like NEHTA have struggled to engage with consumers. I do not think that they understand what benefits that we can bring to the process. I know that it is hard. Basically, what needs to happen is that we need to be engaged. So we need to be invited at the same time as everyone else is invited to the table to discuss it.

CHAIR —Obviously, health is one reference for us. More broadly, are you aware of consumer participation in the other department areas—such as, for example, the communications department or innovation and research?

Dr Williamson —Our alliance is not directly involved in anything there. This is the real challenge for us. There are lots of departments involved with electronic communication and the National Broadband Network and the benefits that it will have for all different parts of the community and our society. We spend a lot of time going through websites trying to find out where and how we can engage.

CHAIR —We heard evidence just before lunch of the classic problem of governments, siloing. As you said, you engage with health. That is appropriate, but some of the issues that you are raising cut across other departments.

Dr Williamson —Exactly. My impression and the impression of the members of our alliance is that departments do not talk to each other very well. Some great things might happen in one department while another department is going along with its activities in total isolation. It is that lack of interdepartmental linkage and communication that make it very hard.

CHAIR —It would be hard for a community sector organisation such as yours to monitor all that and follow what is happening.

Dr Williamson —Yes. When we can establish some contacts it is good. People like Sharon McArthur in the Department of Health and Ageing have been very helpful. In Cancer Australia, we obviously have lots of contacts. When we find someone who listens to us and who understands us, we work on that relationship. If we had the time and resources, we could dedicate a full-time person just to trying to find out where we can be involved with what is happening in government. We just do not have the resources to do that.

CHAIR —To go back to some of your earlier comments, I think you have given us a really good picture of a community organisation that has developed with the technology that has been available. You have telephone forums, internet based services and so forth. But, as I understand it, you are saying that you are now conscious of a range of additional services you could provide. I think you mentioned education and training videos and video link support groups. Do you want to give us a picture of what you would like to do with those?

Dr Williamson —Traditionally our education programs have been provided face to face. Wherever we can get enough people together, even if it is only two or three, if people need it then we provide a session. This is information for patients and families, so it is really the whole gamut. It is about diagnosis, treatment and dealing with side-effects. We also spend a lot of time dealing with people’s emotional journey and dealing with their practical problems. Our aim is always to do everything possible to help every person complete their treatment, because it is not a pleasant journey. It is really hard, it is very costly and the impact on people’s families is considerable. We try to complement the medical service provided by the health system and provide all those backups so that people can go to treatment.

So traditionally we have provided that in face-to-face forums, but increasingly in our survey of patients and families we are becoming aware that not everybody can come to those forums. It may be they are not well enough to come, they cannot afford the transport or they just live too far away. So we have been concerned for about the last five years. We have been trying to reach out to more people who cannot come to us for whatever reason, whether it is financial or isolation—and isolation can be just as much a problem for a person in a city hospital as it is for someone thousands of miles away. Currently, even in parts of metropolitan areas, our broadband system is not reliable enough for us to run an online education program. We also do not currently in the foundation have wide enough broadband to deal with, for example, having a patient conference where we might have 100 or 200 people. If we had a broadband network that we could access and it was reliable, we could broadcast the conference so people wherever they are in Australia could access the information.

It would also create opportunities for people to meet. A lot of people with these disorders seldom meet someone with the same condition. If you are in rural or regional Australia, that is further compounded because there are fewer people there. It is really important for patients on this journey to have peer support. That is why I think our telephone forums have been so successful. Most participants are rural and regional patients. It is very hard for them to get second opinions about things. If we have a haematologist, they can ask all sorts of questions. Even if it is not a haematologist—maybe it is a dietician or an exercise physiologist—they get access to all sorts of other information. But if you also have the capability for a video presentation you could demonstrate things. You could see the other people you are engaging with in the meeting. So it is really about improving access to information and also dealing with the tyranny of isolation and distance.

Mr NEVILLE —You were telling us how the medium of the internet can be used for instructional educational processes and interaction and for the exchange of data. A lot of those services are largely available on the existing broadband, but I take your point about a broad scale conference, where you might have 20, 30 or 40 participants. Can you explain to us what the broadband will do differently from what you have got now? For example, on the medical side, do GPs and your foundation interact over the internet with doctors or universities on a daily basis, or is it more just for emergency cases? Is the haematology, for example, done in country areas and the results transmitted to the capital city? Explain to me where broadband will affect, firstly, the medical outcomes rather than the social.

Dr Williamson —I think you would be aware that there is a lot of telehealth already in Australia. GPs or community nurses in rural areas will interact with their colleagues and specialists in city areas.

Mr NEVILLE —Are they largely being conducted in the country?

Dr Williamson —No; it is mostly—

—Samples are sent to specialists in Melbourne.

Dr Williamson —It depends what sort of haematology you are talking about. That is part of the challenge. For acute leukaemia, aggressive lymphomas and the really fast-progressing blood cancers, most people are treated in the major centres. In Queensland, for example, that would be in Townsville, Brisbane and the Gold Coast. In New South Wales and Victoria, you would have a similar situation but probably with more centres. In Tasmania, that would be mainly in Hobart. People from northern Tasmania would come to Melbourne for the acute treatments. In South Australia and Western Australia they would only be treated in Adelaide and Perth. People from the Northern Territory would normally have to go to another capital city for treatment. That is for the aggressive, acute end of the spectrum.

People who have chronic and slow-developing conditions would usually visit someone in a major centre or a capital city for their initial diagnosis and the planning of their treatment, but often they can then return to their community and be managed by their GP. It might sound crazy, but not everyone with a diagnosis of a blood cancer will actually be treated. For some people with the slow-developing conditions, we know from trials that there has no benefit yet been demonstrated with the treatments available and actually treating them. So they are watched and monitored.

Obviously there is a whole spectrum. The thing is that for somebody who has a chronic condition and is back in their hometown or someone who is elderly and frail living in metro, being able to see their doctor, rather than physically having to go for a face-to-face consultation, can be an attractive option for them.

Mr NEVILLE —Is that happening much?

Dr Williamson —I do not think so.

Mr NEVILLE —Is the lack of speed in the broadband a reason?

Dr Williamson —It is a major issue—even in Brisbane. I live 22 kilometres from the GPO and during the daytime—especially in school holidays—I have only intermittent broadband access even though I pay for the full service. I am in metro Brisbane and have a service I can actually buy; whereas most people in rural and regional areas have dial-up. That is hopeless for anything that requires speed or has large files. For most graphics and pictures, it is a large file and you just cannot access without broadband access.

Mr NEVILLE —Has the Leukaemia Foundation found in consultations with the specialists in that field of medicine that they have an understanding that the doctors will use high-speed broadband for consultation?

Dr Williamson —We have not established that as something we want to do. One area where the clinicians have asked us for help is in some of the rarer lymphomas—a skin lymphoma, for example. Currently in Australia there are two key specialists based in Melbourne who deal with these cases—both a dermatologist and a haematologist. They are setting up a national network where they are training their colleagues in haematology and dermatology to be a specialist pair in each capital city. At the moment we fund patients to go to Melbourne to see these specialists because the conditions are rare, the diagnosis is difficult and the treatment is very particular to the diagnosis.

One way that we talked about helping them was if we had a good broadband network we would be able to provide a teleconference service and share graphics—if we have one of these online services where you can share graphics, like GoToMeeting or something like. A number of them are available—

Mr NEVILLE —And you would have to have high-speed to get them correct.

Dr Williamson —Yes, to get the quality. It is the timeliness of it as well.

Mr NEVILLE —I see your point.

Mr FLETCHER —Am I correct in summarising that you want to see the wider—indeed, uniform—availability of higher speed than is uniformly available today, but you are not putting to us any one specific speed or indeed any one specific technology?

Dr Williamson —No. I do not claim to have any expertise in that area. I think you have plenty of experts out there already telling you what they need. To me, it is becoming a basic infrastructure that we all need. We do not have any recommendations about how it should be provided; we would just like it available as soon as possible, please.

Mr FLETCHER —In the kinds of applications that you are using broadband for now or you would like to use it for in the future, what is the relative weighting of one-on-one communications between somebody sitting in their home and a medical practitioner or a fellow patient as opposed to applications where you might have 10, 20 or 30 people sitting around a screen and a camera and interacting?

Dr Williamson —If you look at the number of people who are participating in our electronic forums and telephone forums it is still smaller than our face-to-face sessions, but I think that is simply a reflection of what is available and what we are geared up to provide.

Mr FLETCHER —Is the electronic forum essentially a chat room?

Dr Williamson —At the moment it is a chat room but, for the different discussion groups that are on our forum, we also—as we do with our teleconferences—invite expert speakers along. We have upgraded our chat forums so that they can have the constant updating of the discussion. We would love to be able to provide the sorts of services that are provided, for example, in the US where people can dial in and they can see on their screen a conference and you have all the people meeting in the room. It makes that available to a much bigger audience. With the wider broadband bandwidth, we could record it and people could then download it. At the moment, we record it on DVD and circulate it by snail mail because we cannot get it circulated via the broadband network.

Mr FLETCHER —Are there particular telemedicine applications that you are interested in seeing?

Dr Williamson —I do not know. That is my short answer. As to our experience with telemedicine, we had a national forum whereby people went along to their local health service and, through their video network, linked to a presentation in Melbourne. It was the first time we tried it and, unfortunately, the bridge failed, which was hugely disappointing to everybody. We are very aware that there are a lot of videoconference facilities out there, but we do not tap into them in a systematic way. But we could and there is a possibility to do more of that.

Mrs PRENTICE —As the chairman noted previously, you indicated that you wanted more input from health service providers going forward and you think there would be benefit from that. In response to questions from the chair, Mr Neville and Mr Fletcher, you have actually itemised some very good examples of where you believe the NBN would be of benefit. You have also taken this initiative of forming the health alliance. Is there an opportunity for the health alliance to itemise some more uses and some more specific examples? Today you have mentioned haematology services, second opinions and dietary information, and they will be captured in the record of today’s proceedings, but it occurs to me that, given the health alliance’s knowledge and experience, there might be an opportunity to try and capture more examples.

Dr Williamson —I am sure the membership would be very happy to do that.

CHAIR —I will just indicate that the alliance is coming to Wollongong. So we might take the opportunity to give them a heads-up.

Mrs PRENTICE —Yes, we could encourage them to have that information for that meeting.

Dr Williamson —Okay. Most of the things that we have actually been concerned about, in relation to the personally controlled electronic health record, are in a document and maybe I can ask the alliance if we could give it to you. I think it would be a useful summary. The major issues that we have with the record and the whole process at the moment is that it is only going to work if there is trust. We feel that up till now the track record on the governance arrangements has been pretty poor. We want to have more openness and transparency in the processes. There are still concerns about the privacy, security and confidentiality of personal health information. We also think it is really important that this record support the diversity of health conditions that people live with, and, obviously, that is a real challenge because, as I know, even with cancer a standard dataset for a solid tumour is very different from a standard dataset for blood cancers, and probably each different blood cancer has a different standard dataset. So there are huge challenges out there, but I do not think we should let the opportunity go just because there are challenges as we should rekindle our efforts to make it happen.

The other factor that the consumer alliance was concerned about is this. We think it is really important that there are mechanisms to make information available for research but without compromising patient confidentiality.

Mrs PRENTICE —It would be good if we could get that tabled for the inquiry. It would be good if we could have some more of the opportunities that you started to itemise before.

Dr Williamson —Okay. There is also a list of consumer aspirations in having a personally controlled electronic health record. I think the sorts of things we are talking about there would really help to give you a better understanding of where we are coming from and why we want to be engaged.

Mrs PRENTICE —It would be great if we could have that tabled. Thank you, Dr Williamson.

CHAIR —I want to explore one other aspect that occurs to me, from evidence that we have, and that you have not actually touched on. Your organisation has a network of volunteers that work with you?

Dr Williamson —Yes.

CHAIR —We have had evidence from others that one of the other things that people are hoping a fibre-to-the-home program can do is better connect their volunteer base, particularly with a dispersed national organisation, and better support them with peer support, training and development. I am wondering if you are doing anything like that already and if that is something that you would be looking at utilising.

Dr Williamson —We are not yet but it would be fantastic if we could. At the moment our priority is trying to address the needs of patients and the health community. But volunteers are an obvious area where we could see lots of benefits.

CHAIR —Particularly, I would imagine, around debriefing and support. I would imagine it would be a difficult area to volunteer in.

Dr Williamson —Yes, it is.

CHAIR —You touched on young people. We have had evidence from mental health service providers that young people are reluctant to access face-to-face services and are much more likely to use online ones. I am interested in your organisation’s experience of that.

Dr Williamson —That is a common experience. It is interesting that when we survey young people—we actually have a special website and forum for young people—their engagement is spasmodic and it goes through ups and downs. We find that they do really want to interact with other young people as they have a really strong need for peer interaction but they do not want to be going along to anything that is seen to be educational. So you have to find a way of engaging with them and then incidentally provide that educational support. One thing we did find from the forum is that a lot of young people will talk about their situation but they are a very hard group to engage, especially when you are dealing with emotions and feelings. I think women are probably the easiest group to tap into. We also find that with our forums men will engage more than they will in face-to-face support groups. With men we have learned that if we call a program an educational program and not a support group then they will come along. So the name and the way you market it are really important.

CHAIR —Thank you very much for that, Anna, as that has been tremendous. Please pass on the comments if you want to but we will follow up as well in preparation for the Wollongong hearing. Thank you for your attendance here today. If you have been asked to provide additional information you can forward it through to the secretary. You will be sent a copy of the transcript of your evidence to which you can make corrections as to grammar and fact. Once again thank you very much for your evidence. It is very useful to us.

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