MyABDR is an innovative new national online system for people with bleeding disorders or parents to record bleeds, home treatments and other important information. There will be different options depending on the user’s preference - a smartphone app, a standard web browser interface, and a paper-based recording system.
The new national system is intended to have benefits all round. The aim is to make recording treatment easier for people, working in with their lifestyle and the online devices they currently use.
- The information that people enter online will be sent straight to the Australian Bleeding Disorders Registry (ABDR) database, where their Haemophilia Centre can access the information and use it to work with them on their or their children’s treatment and care.
- This will be shown on the system as patient-entered information and only their Haemophilia Centre and specially selected technical support staff will be able to view details that identify them.
- This information will also be used to keep track of product usage, so that government can stocktake and plan for future supplies – and Haemophilia Centres will no longer need to spend hours re-entering their patients’ home treatment records into the ABDR system.
- And de-identified patient information can be pooled nationally through the ABDR system so that clinicians and researchers can see the trends and patterns related to bleeds and treatment – essential for improving treatment and care in a rare health condition like a bleeding disorder.
The idea for a national system
The project brings to fruition an idea proposed by HFA Council delegates in October 2011 and shows the goodwill and commitment of all the organisations involved in the collaboration to bring it to life.
In the 2011 Annual Meeting, HFA Council Delegates unanimously proposed to approach AHCDO and together explore the feasibility of adopting a national system for patients to record their clotting factor usage. They recognised that the system would need to have a number of options, both online and print-based, depending on people’s access to technology but wanted to make sure it was universal, patient-controlled and simple.
“As a parent, I was concerned for the future of my son and other kids with bleeding disorders like him,” said Dan Credazzi, Haemophilia Foundation NSW President and one of the Delegates who made the proposal. “We rely on the best possible options for our children’s treatment to make sure they will grow up to be well and active but how do people with bleeding disorders and parents play a part in the decisions about “best practice treatment” for the future?
“At the Haemophilia Conference that year I heard Stephanie Gunn from the National Blood Authority talking about the work that goes on behind the scenes to plan and purchase treatment products to make sure Australians have access to effective treatment and realised we could never take this for granted. Then I heard Dr Mike Makris, who is a leading UK Haemophilia Centre Director. He described how in Europe people with bleeding disorders and their Haemophilia Centres have agreed to join as partners to give data on bleeds and treatments – in the UK, people document their bleeds and how often they use treatment product on their online app, Haemtrack, which feeds into the UK Haemophilia Centres’ database – and because so many people contribute their information to their national database and it is such high quality, the European haematologists have had good evidence for best practice treatment, things like what treatment doses are effective for making prophylaxis work, and can give this to funding bodies to make sure they have good data to plan treatment supply for the future. And I thought, we need an app like this for the ABDR.”
The Haemophilia Centre perspective
AHCDO and the ABDR Steering Committee were keen to support the development of a simple app and a web-based system for the ABDR that patients could use to record their clotting factor usage and bleeds. The ABDR Steering Committee was established several years ago with AHCDO, the NBA and HFA membership as part of the governance framework for the Registry to oversee issues such as privacy and data accuracy.
“MyABDR will be a terrific way for doctors to understand how patients are managing their treatment at home and what is happening for them,” said Dr Chris Barnes, Chairman of AHCDO. “Patients will be able to record their usual doses but also doses around bleeding episodes. This will allow clinicians to more accurately assess how effective the treatment is in preventing bleeds and work with patients to adjust treatment regimens to best avoid bleeding episodes. Another major benefit of MyABDR is the ability of patients to electronically monitor their own treatment more effectively.”
Dr Barnes described MyABDR as “an exciting initiative” that is supported by the Haemophilia Treatment Centres and that it “will allow clinicians and families and patients to work together to optimise the treatment of haemophilia”.
The technical team
The National Blood Authority (NBA) will provide the technical team to develop the app and the web-based screens for MyABDR. The team has already had a lot of success in developing an online database system for the ABDR that satisfies the needs of Haemophilia Centres. Creating an online system to allow patients to contribute their own data to the ABDR was first considered in 2007 when the ABDR was being redeveloped, but was shelved for the time being. Now that it is back on the agenda, the NBA has worked hard to get federal and state and territory government agreement to support the project.
“This is a really exciting time for us,” said Peter O’Halloran, Executive Director, Health Provider Engagement at the NBA. “We have a talented technical team who are just itching to get started on this project which they see can make a real difference to the care and treatment of people with bleeding disorders. And we are very well placed to make sure this will be a system that is safe for the people that use it and can take us into the future. We have been concerned for some time about the integrity and security of data recorded in existing online recording systems, including hosting of such data overseas, and this development will enable us to provide a secure and robust solution that is fully integrated into ABDR and existing workflows in Haemophilia Centres. Building MyABDR into ABDR, which has been around for over 25 years, will also ensure the longevity of the system so that users can be confident that their data will be around for them to access for many years.
“We have also been thinking ahead and have prepared the technology to work in with other national patient health databases - so that if in the future, for example, if everyone agrees that it is a good idea for MyABDR to link with the personally controlled electronic health record (PCEHR), this can be done.
“Integrating MyABDR into ABDR will also enable users to track their bleeds and treatments over time which may help them to better understand and manage their bleeding disorder.
“But from our perspective, the most important thing is for it to work as well as possible for the person that is using it – to be simple, convenient and easy to use and to provide a tool that improves their quality of life.”
The first step will be to consult with people with bleeding disorders and parents or carers about how to tailor the app and web-based screens so that they work well for them. HFA is leading this work and at various points in the development and release over the next 12 months you will see online surveys on the HFA web site seeking feedback and some community sampling with print surveys. There will also be a focus group of community members to give advice and do some intensive testing of the online system as it is developed.
A new system like this is likely to raise a lot of questions for the people who will be using it – privacy and security among others - and HFA will work with the NBA and AHCDO to make sure answers are available. If you still want to continue using your current system, rest assured that you will still be able to do so – but we are hoping the new MyABDR system will work so well, you will prefer to use it!
FAQs will be available to download on the HFA web site and in Haemophilia Centres. And there will be a feedback form on the HFA web site to ask other questions or make comments.
HFA will also keep an eye on any policy issues that are raised. It has been recognised that the HFA role in the collaboration will be to represent the best interests of people with bleeding disorders and this is a role we take seriously.
My ABDR is due for national release in February 2014.