MyABDR user survey

HFA and National Blood Authority MyABDR teams

In June 2017 HFA and the National Blood Authority (NBA) put together a survey for MyABDR users to gather feedback on the current app and website and ideas for future enhancements.

MyABDR is the secure app and website for people with bleeding disorders or parents/caregivers to record home treatments and bleeds and manage their stock inventory. It links directly to the Australian Bleeding Disorders Registry (ABDR), which is the system used by Haemophilia Treatment Centres around Australia for the clinical care of their patients. Released in 2014, MyABDR is a collaboration between HFA, the Australian Haemophilia Centre Directors’ Organisation (AHCDO) and the NBA on behalf of all Australian governments, and it is reviewed and improved regularly with feedback from the community and Haemophilia Treatment Centres.

This survey was an important opportunity to see how users are finding MyABDR and consider what might improve their user experience. Our thanks to the people who gave their time to respond.


94 people completed the survey.

49% had a bleeding disorder

51% were parents/guardians of children with a bleeding disorder

3% were the partner/caregiver of someone with a bleeding disorder


42% used a computer

42% used an iphone

27% used an Android phone

21% used an ipad or Android tablet


MyABDR user experience graph

MyABDR features liked graph

Least useful features

11 users thought all MyABDR features were useful; 3 did not like any of the features.

28 users made comments on specific features. . The main comments were:

  • Treatment plan – not current; also needs doctor contact information for Emergency Department visit
  • Body map – not specific enough for actual bleed location
  • Inventory stock quantity – difficult to match what is actually at home, or if you have treatment at another hospital and want to record
  • Expiration date – doesn’t relate to product on hand.

Recording treatment graph

What gets in the way of recording?

  • Time – are busy; forget to record afterwards
  • Can’t remember how to use MyABDR when not used for a while
  • Poor reception
  • Entering batch numbers, especially with poor eyesight or arthritic fingers
  • Many steps that take time if you are not dextrous
  • Can’t edit hospital entries or inventory if these are wrong
  • Problems with inventory then can’t record treatment
  • Not enough bleed options for females
  • Can’t record bleeds in multiple body locations easily
  • Needing to re-enter or reset password
  • Treatment is with product that is not in the list
  • On a clinical trial and can’t use MyABDR.

Suggested improvements

  • Barcode scanning of batch numbers
  • Reports on mobile app like on the web version
  • Summary list of bleed treatments
  • Home delivery stock details automatically added to the MyABDR inventory
  • Reminders for prophylaxis treatment
  • Fewer steps and screens for login and recording.

Support graph

“They are always available and on the ball. Great support team!”

Many of the survey respondents commented that they were not aware of the support team or of the support materials available on the MyABDR website – This is clearly an area for more active promotion to users.


The HFA and NBA MyABDR teams will review the results together and look at what can be dealt with immediately. This may include advertising the support team and the support materials more widely and agreeing on next steps for identified enhancements.

There are some improvements already in the pipeline:

  • Barcode scanning of batch numbers – planned for 2018 once updates are completed to the barcodes by suppliers
  • Updates to how treatments and bleeds are recorded, in particular the use of the body map and ability to record multiple bleed locations and multiple products.

Look out for the MyABDR update articles in your Foundation newsletters for more information about this.

And a reminder that you can provide feedback on MyABDR at any time:

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