No 190 June 2015

MyABDR - A Personal View

NEIL FROM SA
‚ÄčNeil is a community member from South Australia

I welcomed the advent of MYABDR with some excitement and attended a users meeting in Adelaide prior to its rollout.

I have since found it easy to use – inputting the information online takes less than 10 minutes.

FAVOURITE FEATURES

I use the web site version of MyABDR.

I particularly love the reports - the ability to be able to look back on past treatments, when they occurred and their frequency. The pie chart that comes up is very good.

I also really like the body image that comes up when you want to pinpoint a bleed. It is so easy to define where the bleed is; then when you click on it, all the options come up to help you refine it. The drop downs and the automation work well.

MyABDR body map

Another feature I find handy is to have the treatment plan available. It gives me peace of mind knowing that if I do have a larger than usual dose for a severe or traumatic bleed, this is what has been agreed on with my Haemophilia Centre.

THE VALUE OF MYABDR

The information recorded provides all stakeholders – me, the HTC, everyone involved in the treatment of haemophilia - with data in various formats indicating amongst other things, frequency of bleeding episodes, bleeding sites and usage of factor over various periods.

MyABDR also enables me to record factor received without difficulty. When I bring home my new stocks of factor VIII, I can record my stocks and then put the vials in the fridge. That’s how easy it is. The product doesn’t have to sit out of the fridge for a long time while I work out how to record it, because the system is so easy and quick to use.

While being of great value to me in recording my history of bleeding episodes and the sites of those bleeds, it is also provides the Treatment Centre and relevant government agencies with the type of data required to provide people with bleeding disorders improved treatment and care. With these statistics in front of them they are more informed about the importance of these products to people with haemophilia and other bleeding disorders.

It is at the ‘end of the chain’ that, in my opinion, the real value of MYABDR exists for people with bleeding disorders and for this reason the more it is used the better.

I would like to take this opportunity to thank all involved in the development and on-going maintenance of MYABDR and strongly recommend it to all people with bleeding disorders.

MYABDR provides us with the opportunity to influence our level of treatment and the availability of improved factor.

MyABDR bleed locations pie chart

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