Case study – National Blood Authority
MyABDR (Patient Interface to a Clinical Registry)
MyABDR is a unique smartphone app for iPhone and android designed for the 6500 Australians with bleeding disorders such as haemophilia. It is fully integrated into the Australian Bleeding Disorders Registry system used in every haemophilia treatment centre throughout Australia, enabling the two-way sharing of important clinical, personal and product inventory information that directly benefits patients, clinicians, researchers and the National Blood Authority.
Agency overviewThe National Blood Authority (NBA) is a statutory agency within the Australian Government Health portfolio that manages and coordinates arrangements for the supply of blood and blood products and services on behalf of the Australian Government and state and territory governments. The key role of the NBA is to provide an adequate, safe, secure and affordable supply of blood products for all Australians. In undertaking this role, the NBA administers an annual budget exceeding $1 billion.
MyABDR is revolutionising the health sector here and overseas. For the first time internationally, MyABDR provides a fully integrated system across the spectrum of services and activities delivered by government agencies, researchers, suppliers, patients and health professionals including doctors, nurses, physiotherapists, social workers and other hospital staff to people with bleeding disorders.
It gives each user access to rich, useful and secure information from anywhere in the world; improving the standard of healthcare patients receive and potentially saving lives in emergency situations.
The objective of the project was to build a patient interface into the Australian Bleeding Disorders Registry (ABDR), the system that is used at all Haemophilia Treatment Centres in hospitals across Australia, in order to collect data relating to home inventory levels of patients and discards of units. This data is critical in the reduction of wastage associated with clotting factors and to understand the location and extent of inventory levels across the sector.
Following many prototype iterations, alpha and beta releases were used to conduct extensive usability testing with patients to ensure the app could perform effectively in real life out of the focus group environment.
The focus groups were based on an open and collaborative approach where listening to patient needs was made paramount so that people would want to use MyABDR and in doing so enabling the Authority to get access to the high quality data sets it needs to optimise the delivery of its objectives. This meeting of minds from both Government and patients and a willingness to truly listen was central to the blossoming of innovation that otherwise would not have been possible in a less participatory approach.
MyABDR has been transformational in its ability to provide improved services to patients while greatly enhancing the NBA’s ability to deliver on its primary policy objectives under our Act and the inter-governmental agreement covering blood. The app changes the way people with bleeding disorders monitor and treat their condition. It enables them to easily record bleeds, home treatments and other important information about their condition in real time and makes it immediately available to their doctors, nurses, physiotherapist and social worker on their clinical record in the ABDR. People with bleeding disorders need to undertake several tedious tasks including remembering to treat themselves, keeping their treatment diary up to date so clinicians can optimise their treatment, ensuring they always have enough product and can recall important events when they attend clinic review.
MyABDR is quick and easy to use and takes the hassle out of these repetitive routines. The app also has the potential to save lives in an emergency by putting important diagnostic and treatment information in real-time at the fingertips of doctors, nurses, physiotherapists and social workers even when patients travel away from home. This information also greatly benefits research into haemophilia and other bleeding disorders through the generation of quality data now being recorded, extracted and analysed by researchers.
Some real-life examples of how MyABDR is making a difference are:
- A physiotherapist can follow up to ensure a school student who has recorded a bleed knows they need crutches for long-term well-being even if they feel embarrassed at school to use them;
- An administrative staff member can see that a patient has updated their product delivery address in MyABDR and can follow up with the supplier;
- A clinician can produce a report to quickly see how effective a patients’ treatment regimen is and adjust accordingly; and
- A nurse can review of photo of a bleed that a patient has uploaded to determine if the patient should come in for a clinic review.
An inventory module has been built into MyABDR that allows users to add product, report use and monitor remaining product. It draws on product data from suppliers to enable pre-filling of details such as batch numbers and expiry dates. It shows notifications about expiring, expired or recalled products. The ability for the NBA to access new high quality datasets through the introduction of MyABDR greatly improves the data available for research and product supply planning. MyABDR solves the specific problem of identifying inefficiencies such as product wastage in the supply chain which is already generating an estimated $1m savings each year in Australia.
The NBA information governance framework has been updated to reflect the governance outcomes that occurred through the project’s extensive consultation with patients, peak bodies, clinicians and other stakeholders. This ensures the data is fit for purpose and delivers optimum benefits throughout its life while ensuring appropriate controls such as privacy compliance obligations are met.
Due to the high quality data generated by MyABDR it allows the NBA to improve supply chain efficiency and demonstrate agency accountability that funding provided by Government is not being wasted on discarded products through inefficient supply chain management.