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Launch of MyABDR

Launch of MyABDR


Well welcome everybody my name is Leigh McJames… ..and for some reason I wasn’t moving quick enough… ..and I am the MC for the day.
(Laughter) I am the General Manager of the National Blood Authority, and it’s a great privilege and we do appreciate… ..people making long journeys to get here, for this very important occasion. Specifically I’d like to extend a warm welcome to… ..the Honourable Senator Fiona Nash,
Assistant Minister of Health.
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Deborah Chan, Advisor to the Minister. Mr Gavin Finklestein,
President of the Haemophilia Foundation Australia. Dr Simon McCrae, Chair of the
Australian Haemophilia Centre Directors Organisation. Miss Sharon Caris, Executive Director
of the Haemophilia Foundation Australia. Ms Gayle Ginnane, Chair
of the National Blood Authority Board. Ms Kerry Flanagan, Deputy Secretary,
Department of Health. Mr Peter Woodley, Assistant Secretary,
Department of Health. Staff and representatives from
the Haemophilia Foundation Australia. Bleeding disorder patient and carer representatives. Distinguished guests, ladies and gentlemen. As I said, we very much appreciate you joining us today. This event is intended to mark the culmination
of an intense period of collaboration. That was between clinicians, patients and governments… ..and the result is a unique outcome
supporting people with bleeding disorders… ..and in terms of unique, that’s globally unique. The format of the proceedings,
are designed to reflect this shared journey… ..by bringing each of these perspectives into focus. Dr Simon McCrae will in the first instance
give the clinician’s perspective. This will be followed by the patient’s perspective,
given by Gavin Finklestein. Peter O’Halloran from the NBA
will then focus on the MyABDR App, and the work to bring the project to fruition. These three speeches provide the backdrop
to the formal launch, which Assistant Minister Nash will preside. In the first instance
I am pleased to introduce Dr Simon McCrae. He is Chair of the
Australian Haemophilia Centre Directors Organisation. He is well qualified to give the clinician’s perspectives. He is currently a haematologist
with South Australian Pathology. Having undergraduate and physician training
in Hobart Tasmania, Dr McCrae completed haematology training
in the UK and Newcastle. After gaining college entry he then undertook,
a four year fellowship… ..at the McMaster University in Ontario Canada, in the field of venous thrombosis. Dr McCrae co-ordinates a clinical trial program
in the area of venous thrombosis, at the Queen Elizabeth Hospital. And is also involved in running the
Haemophilia Treatment Centre… ..at the Royal Adelaide Hospital. His particular research interests include the use of
lab tests to predict clinical outcomes… ..for patients with venous thrombosis,
new anticoagulants, and evidence based management of patients
with, or at the risk of, venous thrombosis. Please welcome Dr McCrae
(Applause)Thanks Leigh, that sounds a bit exhausting all that…
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(Laughter) Minister Nash, colleagues from the NBA,
friends, and colleagues from the haemophilia community. It’s a great privilege to be here today representing AHCDO, or the Australian Haemophilia Centre Directors Organisation. We, as clinicians have the great privilege of looking after… ..roughly 6,000 patients with bleeding disorders in Australia. The most severe of those disorders such as haemophilia, if we look backwards, when untreated, resulted in significant morbidity, mortality, often a life expectancy measured in decades… ..and a lifetime of potential chronic disability. The provision of adequate healthcare,
including clinicians, and also importantly safe and adequate
supplies of clotting factor, have changed dramatically the course of
the clinical history in this patient group. This was highlighted to me, perhaps best, by the fact that I did a clinic this week,
where I had a grandfather and a grandson… ..in the same clinic. The grandfather… ..unfortunately had many bleeds when he was young, by the time he was mid-twenties
had to be on a disability pension, because of an inability to work… ..and has had long term issues with chronic pain. The grandson came across to us, from the Women’s and Children’s Hospital in Adelaide, with perfect joints, an active participant in sport, and was looking forward to his degree at University. And I think that really highlights to me, the importance of ensuring that we are
using this resource appropriately, and that we are monitoring,
what the impact of using clotting factors is. I think this sort of App much more useful,
than the majority of Apps that I have on my phone.
(Laughter) Allows, really what clinicians and
I think patient groups have also been after. A way of quick and prompt communication… ..between patients with bleeding disorders and clinicians. Allowing us to act when we need to, to modify treatment, and not having to go through 25 pages of diaries… ..when we are in clinic, as well, which is always good. And I think it has really been driven by a clinical need, and that is a great outcome. So I’d like to congratulate everyone that’s worked on the App. I know that Michael and Peter particularly, at the NBA,
have been central in developing it. And we look forward to rolling it out,
next week in South Australia. And I look forward to getting lots of messages
from my patients. Thank you. (Applause) Thanks Simon. It’s now my great pleasure… ..to introduce Mr Gavin Finklestein, the President of the
Haemophilia Foundation Australia, to give the patient’s perspective. Gavin has been the President of
Haemophilia Foundation Australia since 2006, he has severe Haemophilia A and his work
in the bleeding disorders community… ..started at the grassroots level, through his membership
of Haemophilia Western Australia. Where he is still currently the President. Gavin represents HFA on various committees,
and ensures the voices of people living with, Haemophilia and related inherited bleeding disorders,
and their families are heard. Gavin is involved in the World Federation of Haemophilia,
and has participated in development programs, and of course, is involved in the upcoming
World Haemophilia Congress in Melbourne, in May of this year. Please give Gavin a warm welcome. (Applause) Good morning, Assistant Minister Nash
and representatives of the Department of Health, and to everyone here from the
different parts of the blood sector. I can only say what a great pleasure it is,
that we are here today at the NBA. Thank you to Leigh McJames and his team,
for organising this launch. The Australian Bleeding Disorders Registry
has been in operation for many years, and there has been a lot of work done to improve
the quality of the data held in the registry. It is a good tool for Haemophilia Centres to support
the clinical management, of people with bleeding disorders. Further this registry has been able to help governments
plan for adequate supplies of clotting factors. There are people in this audience from the
community and government officials as well, who remember how difficult it was
when we didn’t have enough clotting factor. In those days we depended on
plasma derived treating products… ..to treat our bleeds. We had many people living
with the pain of uncontrolled bleeds. Kids missed huge amounts of schooling and their parents
missed work because they were caring for them, or sitting with them in hospitals.
People died or became severely disabled ahead of their time. There was just not enough clotting factor to go around. Adult patients said try and look after the children first. Many of these people still suffer for
lack of treatment, from back in those days. Fortunately it is now possible for bleeds to be
treated properly in both children and adults, and we hope those bad old days in Australia
are well behind us. We must remember that the best practice care
and treatment, does not mean access to clotting factor. This alone will not improve the quality of life
and health, of people in our community. We also need properly resourced
Haemophilia Treatment Centres, with appropriate clinical and allied health services. These services are somewhat inconsistent
around the country today. Working towards improving the situation,
is one of our priority areas. It is great that we have people here today
who are representing, state and haemophilia foundations from around australia,
as well as HFA representatives. In October 2011 a decision by our HFA Council, lead to our approach to the
Australian Haemophilia Centre Directors Organisation… ..to seek their support for a national system for patients
to record their clotting factor usage. And for this to be linked with the Registry,
to support best practical clinical care and treatment. The Community recognised data was critical to ensuring the needs of people with haemophilia,
and other inherited bleeding disorders, would be met. It appreciated that the high cost
of treatment products for governments, needed to be planned for carefully, so everyone could have the treatment
and care that they needed. That Council resolution stated and I quote. “That relevant stakeholders would need to explore
and evaluate appropriate options, financial and resource requirements,
and an effective implementation and evaluation plan.” And here it is, today March 2014, and we are
celebrating the Official Launch of MyABDR, as it is being rolled out around the country. I would like to thank the Community Members
for their commitment to this project. Participation in the development, promotion and rollout, has taken up a lot of their time, and effort, and we hope everyone will be proud of this achievement. As a collaboration between the NBA, AHCDO,
health pofessionals and Haemophilia Centres, and the Community, which includes patients
and their families and carers, we could not wish for a better result. We have worked together to develop
a Phone App and web based tool, that is safe for patients to use, in terms of their privacy, and we feel sure that useful information will be available. To help people better understand their bleeding patterns, and make a plan for them and their clinicians
to best manage their treatment processes. And further de-identified and aggregated information, can be used to understand the bigger picture
at government level. We now need to build on this great resource, and we look forward to the opportunities
we have to use the data. We know it is not enough for us to say
that clotting factor is important… ..because it stops and prevents bleeding, and that it makes it possible for us
to live better, in our challenging lives. Home therapy has of course improved our lives, and with the benefit of the clinical expertise
at Haemophilia Centres, we are living longer and hopefully more productive lives. But at all levels now, we need statistics to prove it, or the evidence so that we can understand our bleeds, how we might treat ourselves more effectively, and more generally, how best to plan for the
ongoing requirements of our community. This still requires collaboration. MyABDR has demonstrated how
the NBA, AHCDO and HFA, with the support of governments around Australia
continue to do this. In conclusion, I thank all the Jurisdictions
for funding this project, and everyone who contributed to its success, and express my hope and HFA’s expectation, that MyABDR will always be of use and benefit
to people in the bleeding disorders community.
Thank you. (Applause) Thank you Gavin, and now our final speaker
before the launch, I am pleased to welcome Peter O’Halloran,
the Executive Director, Health Provider Engagement, and the Chief Information Officer
at the National Blood Authority. To provide an overview of the development
and delivery of the MyABDR App Project. Peter continues to be a driving force
in the delivery of IT improvements, rolled out across the blood sector in recent years. He joined the NBA in 2008
from the University sector. Peter. (Applause) Well, good morning Minister, distinguished guests,
ladies and gentlemen. As previous speakers have spoken, MyABDR is a collaboration
between HFA, AHCDO and the wider community members, whether its health professionals,
or people with bleeding disorders and their carers. And I think that is one of the key things
that has come through for us, as we’ve worked through this process, is that we have been able to develop an application
that actually meets the needs of all those stakeholders. So the Smartphone App is designed very much,
for patients to be able to use quickly and easily, it can be filled out in 30 seconds
while an infusion is occurring. Buttons are designed
so that if you have joint mobility issues, it’s very easy to select the buttons, and then from a clinical point of view
the information goes directly into ABDR… ..and is available in real time, for the health professionals,
who are caring for people with bleeding disorders. From a government perspective,
we think that’s wonderful, because we then get real time data
in terms of demand for product, so that we can do better supply planning. To ensure the products are available
as they come through. But I suppose going back to where we started, I originally started this idea,
we’d go into this project 2012, where we were working with HFA and AHCDO,
looking at what we could do, and have the idea, well we can go
and pick something, off the shelf overseas, tweak it a bit to fit into Australian conditions,
link it in to the system and away we went. We did some research, and came away,
truly, actually surprised at the time, that there is nothing else in the world,
currently set up, that enables people with bleeding disorders
to have access to their records. From their equivalent of ABDR across the world, to then actually be able to see them on a smartphone, record bleeds, record infusions, view their records and update
and have their clinicians see it in real time. So this is really a global first, and the way we developed it,
very much is through collaboration. So we have actually managed
through a series of focus groups, evenings, weekends,
late night phone calls across the country, whenever people were available,
to develop it in house. We have also delivered it, on time, and under budget. So, it is not often I can say that for an IT system.(Laughter) But so far it is there and I think, I suppose, I have had the great privilege
through this whole process, of really being able to work with a large range,
of community members and health care professionals, who have really welcomed my team
and I, into their facilities, into their experiences, to help us develop
something to actually work for them. And early this week I had the great privilege… ..at one of the major hospitals in Melbourne, of actually attending
one of the community training sessions. And I spoke to a range of patients
and there were a whole lot of probing questions, and it felt almost like the Spanish Inquisition.
Two hours later I am still there, answering obscure questions,
I think with the right answers. But what was really lovely after that session, was one of the people that had been there
actually came up… ..and spoke to me for about 10 minutes
after the session, and this had been someone who had haemophilia. He has been treating himself for 30 or 40 years, has seen a lot, has experienced
a large amount of what has happened, and it was his approach,
he said that he came into it very sceptical, yet another system, it will come it will go.
Governments will get what they want, we will be left doing all the hard work for you. And it was the revelation for him,
that he came to through the session, that actually this would work,
this would improve his outcomes, this would help him keep records,
and have better control of his condition. And that to me, I think, is probably the key thing, is that this will enable us to
help improve people’s lives, improve the clinical outcomes,
and is actually going to work for patients. So that I suppose for me, really is the key message… ..that comes out of this, is that the collaboration, and early engagement with the community
has made such a large difference. Now I suppose, while we are
on that topic for a moment, there are a few key people
that I really would like to recognise, because without them, we could not have got
anywhere with this project. So from AHCDO, doctors John Rowell,
Chris Barnes and Simon McCrae. These are all driving forces,
this project has been going on for some years. And before that we have been working
on ABDR for some years, and throughout that whole process,
there has been good humour, wisdom, and guidance from these three, that has really helped us shape,
and deliver systems that work. From HFA, very much Gavin Finklestein,
Sharon Caris and Suzanne O’Callaghan. Who have put up with all sorts of
strange requests from my team and I, at weird times, to see how we can tweak things
to make it work. Always with good humour,
and always with very sage advice, to ensure that we deliver something
that actually works. My biggest thanks, however, is to the myriad
community members and health professionals, who have given their time freely,
constantly, without complaints. So, pick a beautiful day in Melbourne,
on a Saturday, you can go out and enjoy life, or you can spend eight hours locked up
in the hotel at the airport, going through endless different things
with software developers. And they did it without complaint. Some of those members are here today
and that really is a great thing. Finally, very much, to some of the team
at the NBA here, so, we’ve got Michael Linegar,
who looks after our application development, and his amazing group of people
who helped develop the application. And also Jo Cameron and her amazing group,
from the support side, who have actually been the ones out on the ground, rolling this out,
and working with community members. So in conclusion, thank you very much
for your time this morning, and I look forward to a number of years of continuing, to work with the community
and delivering MyABDR and enhancing it.(Applause)Thanks Peter. It is now my great honour, to introduce the Honourable Senator Fiona Nash,
Assistant Minister for Health. Senator Nash, was elected to the Australian Senate in 2004,
and her term began in first July 2005. Senator Nash has served on a range of Senate Committees. She has also served as the shadow Parliamentary Secretary,
for Water Resources and Conservation, and Shadow Parliamentary Secretary
for Regional Education. She is currently the Nationals Party Whip in the Senate,
and Deputy Leader of the Nationals in the Senate. Please welcome, Senator Nash
to officially launch MyABDR. (Applause) Thank you very much Leigh. To Mr Gavin Finkelstein, Ms Sharon Caris,
Dr Simon McRae, Ms Gayle Ginnane, Ms Kerry Flanagan, and Mr Peter Woodley,
Distinguished Guests, Ladies and Gentlemen. I do have to say just at the outset, I’ve had a very brief introduction
to the technology here at the NBA, and I am very, very, impressed! Thank you very much for inviting me here today,
to launch the MyABDR Application. I really enjoy every opportunity
that I have to meet, and to thank… ..those who are delivering outcomes
that improve health services in Australia. The work at the National Blood Authority
to deliver a safe and secure blood supply is an important area in my portfolio.
The supply of blood is a critical health service… ..that directly saves lives, every hour of every day,
in communities throughout Australia. In addition, the National Blood Authority
oversees a significant budget… ..on behalf of Australian Governments
that will exceed $1.1 billion in 2013-14. Australians living with bleeding disorders
are central participants in the blood sector. Bleeding disorders, such as haemophilia,
can be debilitating without appropriate treatment, and the availability of replacement clotting factors,
is a key element. The Federal, State and Territory Governments
will spend in the vicinity of 200 million dollars, in this financial year. To continue to support individuals
living with these chronic conditions. The MyABDR App is a globally-unique smartphone app, …it is a significant step forward
in improving the support available… ..to Australians living with bleeding disorders.
As highlighted by the previous speakers, the MyABDR App… ..is a great success story that contributes to the needs
of patients, clinicians, medical staff and governments. It is also an outstanding example of what can be
achieved through genuine and close collaboration. And I think we have heard that, very clearly today. The app will enable people
with bleeding disorders and their carers… ..to record bleeds and home treatments
in real-time wherever they are, and have those details immediately listed
on their clinical record… ..in the Australian Bleeding Disorders Registry.
It will allow clinical staff … ..in their respective Haemophilia Treatment Centres
to provide more timely and targeted… ..clinical care to improve patient outcomes. The app will also provide governments with enhanced data
to better manage supply and model actual patient treatments… ..against agreed benchmarks and guidelines. This is an important project that has been
delivered on time and indeed under budget. And very good to hear the under budget part.
(Laughter) And perhaps of greater note,
it meets all stakeholders’ needs… ..with a high level of user acceptance
– or, to put it simply, ‘it works’. That is one of the great dividends
from the partnership we have seen… ..between governments, clinicians
and patients on this project. I commend and thank all those involved
in bringing the MyABDR App to fruition,
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including the Haemophilia Foundation Australia, the Australian Haemophilia Centre
Directors Organisation, and the National Blood Authority. The app is an e-health world first
in supporting individuals with bleeding disorders… ..and you should be justifiably proud of the result. Congratulations to all concerned and I look forward
to the improvements this development…
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..will bring to the health care of Australians
living with these conditions. It is now my privilege to officially launch
the MyABDR App. Thank you. (Applause) And Minister, if I can invite you to cut the ribbon. (Laughter) Very modern technology, ok let’s see if I can do this. (Applause) (Sounds of a Heartbeat) (Trumpet Fanfare) And now the MyABDR App is launched. (Laughter & Applause) And thank you Minister.

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