Gavin Finkelstein is President, Haemophilia Foundation Australia
I have been talking to you a lot about the Australian Bleeding Disorders Registry (ABDR) and MyABDR in many of my recent messages in National Haemophilia. I don’t mean to sound like a broken record, by going over and over the same things, but the exciting thing about MyABDR is that it is continually developing and improving! And, it is designed to be helpful for the people who use it. You will read more about how the MyABDR development has progressed later in this edition.
One of my regular conversations when I meet with people in our community is about how we can measure treatment success in Australia – so that governments can assess, and be reassured that their expenditure on haemophilia treatment products represents value for their money as part of overall health care costs in Australia. When I talk about this, many people in the bleeding disorders community are aghast! They KNOW their treatment works. Many, like me have lived in the days when there was no treatment with concentrates or later, when treatment was rationed for lack of supply. We know our bodies, we know what it takes to treat a bleed, how long it takes to recover and how we should keep our bodies strong to prevent bleeds. Right?
But with more specific record keeping about our bleeds and communications with our treaters we can better understand our bleeding patterns and how best to prevent or treat bleeds. We can work with our treating clinicians to make sure we are treating at the right time, and with the right amount of factor. Home therapy was liberating for us all those years ago, because it allowed us to use our judgement and treat at home. And now, several Haemophilia Centres in Australia have arranged for their patients to have their clotting factor delivered to their home or to their workplace. This helps families and individuals to get on with their lives, without the frequent trips to hospitals or blood banks to collect their factor. But our treatments are expensive. We are lucky that we live in Australia where they are funded by governments and provided to us free of charge. It is entirely reasonable that we take responsibility and demonstrate our personal accountability for the clotting factor we use.
I hear of more people who use the information about their bleeds they have recorded on their MyABDR app in reviews with their treating team at haemophilia clinics and see how useful a tool it is for all concerned. We are keen to see more Haemophilia Centres using ABDR and MyABDR in partnership with more of their patients. I know in some Haemophilia Centres this comes down to limited staff resources at their end but in time the benefits will be so obvious that we hope this problem will also be resolved.
The Canadians have adopted the ABDR and the Canadian bleeding disorders community is moving towards MyABDR. My counterpart Craig Upshaw at the Canada Hemophilia Society has challenged us to a competition to see which organisation can encourage the most people to register and use MyABDR! More on that later!
The big picture benefits of ABDR data system are already playing out. The pooled data in the registry can tell us about the Australian bleeding disorders community more generally. It helps governments and health service providers and organisations like HFA know more about the community, and enables everyone to plan for services and activities needed for the best outcomes for the health of individuals and their families and carers. HFA uses the data for government submissions about health care generally and more specifically for funding grants that enable us to provide support to the community.
For governments it is important to keep tabs on the amount of treatment product that will be needed for future treatment, so they can budget for this, and ensure supply plans that will accommodate our future needs. Some of this data is published by the National Blood Authority in the ABDR Annual Report. The data reported is carefully considered before publication to make sure it cannot identify individuals and provides the overall picture we require. There is a very robust governance framework for the ABDR and MyABDR and strictly enforced rules about privacy and access to information about individuals. HFA is a part of this framework and Sharon Caris, Executive Director is a member of the ABDR Steering Committee.
HFA is keen to use ABDR data to understand more about the bleeding disorders community and their treatments and how we compare with other countries. Every year HFA requests data to be released for the World Federation of Hemophilia (WFH) Global Survey. WFH publishes this data every year to show the level of treatment around the world, to support advocacy and development where it is needed and to provide data that can be used to support existing levels of care in countries and value for money and cost effectiveness. The Australian Haemophilia Centre Director’s Organisation (AHCDO) uses the aggregated ABDR data for benchmarking and research and we support this.
I am about to head off to represent HFA at the upcoming WFH 2016 World Congress and General Assembly of World Federation of Hemophilia in Orlando in July. One of the hot topics will be data, evaluating and measuring treatment outcomes. I also look forward to reporting more about the treatment pipeline. Unfortunately most people in Australia still do not have access to longer acting treatment products, unless they are on clinical trials or extension studies associated with a trial. We have approached the National Blood Authority seeking access to the products that are registered for use in Australia without success. We will continue this work.
I am pleased to report that one of our emerging youth leaders, Sam Linnenbank, has accepted my invitation to attend the General Assembly in Orlando to represent HFA as the alternate voting delegate. Sam is a member of HFNSW, and a participant in the HFA Youth Lead Connect program. Sam won a Go For It Grant to attend the Congress, and the HFA Council took the opportunity to invite him to participate in the General Assembly. I look forward to working with him at the General Assembly.
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