Healthcare

for people with haemophilia is primarily delivered through a network of jurisdictional based Haemophilia Treatment Centres (HTC) that are funded under respective devolved state or territory arrangements. The HTC are founded on a comprehensive care model which encourages an integrated approach to the management of haemophilia in a manner which obtains the greatest patient benefit from multidisciplinary care. Our framework for the management of treatment for people with haemophilia involves a number of groups that represent patients and care givers, specialist healthcare professionals, HTC, industry partnerships and all Australian governments. At the highest level, it operates on the basis of an informal shared responsibility, RG-7388 datasheet or ethos, to deliver the most effective health outcomes possible while recognizing the need for efficiency.

The NBA facilitates the funding and formal elements of the framework by establishing outcome or project based forums that include representation from all relevant stakeholders. At the core of the national framework are formal partnership forums and Deforolimus clinical trial consultative processes that oversee key outcomes or projects to support or improve haemophilia care. Coordinated by the NBA, the number, composition and life of these forums change as specific outcomes are delivered or new projects arise. Importantly, many of these forums are executive in nature and provide stakeholders with direct input to funding decisions. Some key examples include: 1 The ABDR (Australian Bleeding

Disorder Registry) Steering Committee, chaired by AHCDO (Australian Haemophilia Centres’ Directors Organisation), which oversees the development and operation of the nationally funded ABDR. The ABDR, including the newly launched MyABDR, is a world leading national clinical registry for patients with bleeding disorders, used on a daily basis by clinicians and patients as a clinical tool. The Sodium butyrate formal forums are complemented with regular and robust cross representation and planning consultation between the NBA and each stakeholder group. The Australian collaborative model has delivered an ongoing programme of improvement outcomes for funders, stakeholders and, most importantly, patients. Haemophilia care in Australia meets or exceeds every one of the 10 European principles of haemophilia care [45]. In addition, the national arrangements in Australia exhibit many of the macro-characteristics deemed as world best practice. Some key highlights include the following: Australia’s national procurement arrangements realize the best product price and associated service arrangements available globally. As identified by Hay, best price enhances affordability, and hence provision of effective haemophilia care [46]. Australia provides access to prophylaxis and home treatment while realizing a declining per capita usage of FVIII (6.