Wednesday, July 26, 2017

Enter Title

Minimize

Mission statement

The PH Soc ANZ will advocate for a sustainable ‘model of care’ that leads to equitable and timely access to skilled clinicians in the diagnosis, treatment and ongoing management of patients with Pulmonary Hypertension in Australia and New Zealand.

 Achieving Key Steps in 2011

 Step one - Define the current paradigm of service delivery in ANZ

The PH Soc ANZ will conduct a survey / questionnaire to all designated centres in Australia and New Zealand encompassing all physicians and allied health professionals involved in the diagnosis and management of PHT to establish the current level of service provision and identify potential themes which members wish to be addressed by the society. The Society hopes to be able to share the results of this survey results with our sponsor partners and the medical community in the form of abstract(s) and scientific publication.

Step Two – Bring the group together and review current ‘models of care’

The PH Soc ANZ will conduct a one and half day scientific meeting that brings together all Australian and New Zealand PHT designated centres to discuss service provision in our region. At this meeting we will present the results of the survey, discuss the needs of the society members and advocate for future planning within ANZ. We will plan to publish a white paper outlining our views of how future management of PH could grow within Australia and New Zealand. We will also showcase the latest research from the Australian and New Zealand PHT community. We would welcome our sponsor partners to this meeting to build the relationship between all of the pulmonary hypertension community.

Step Three – Implement the ANZ registry / database for all PHT patients.

Collectively this will become a platform for future clinical trials and future PhD / MD research throughout Australia and New Zealand. It will allow us for the first time to quantify the burden of disease in our region. We will use this data for future lobbying needs and funding requirements to both state and federal governments in ANZ.

The database will be a annually reported database with our sponsors in a de-identified manner to allow our sponsoring partners to learn from trends in management as the PHT learns and adapts to our insights gained from this data registry.

Step Four – ANZ breathlessness and awareness campaign

With recent data suggesting a delay in diagnosis and an increasing incidence and prevalence rate, awareness of breathlessness amongst the general public is increasingly important. A Direct to the public awareness campaign surrounding the concept that ‘unexplained breathlessness is not OK’ will empower the community to seek advice and persist in getting answers, meantime, the society will working  with Clinicians to more actively pursue a diagnosis for unexplained breathlessness.  As part of this campaign we believe a national 6’ minute walk day would be a great way to create awareness.

This will run in tandem with international efforts, such as the Pulmonary Hypertension Association (PHA) USA’s white paper on breathlessness and the U.K’s PAH awareness programs with a separate targeted PAH, CHD and general PHT programmes.

We believe that the above mentioned programme has an extraordinary amount of benefit to all those involved in PHT, including patients, physicians, allied health and the pharmaceutical industry itself.

 

The society believes that working with sponsoring partners we will be able to achieve our goals in a timely and effective manner in 2011.

Achievements for 2011

1. Survey of service provision completed, analysed, published and shared with our sponsoring partners.
2. Stand alone PHSANZ ‘models of care’ scientific meeting with attendees from ANZ designated centres. Sponsoring partners would be invited to be present with opportunities         available for scientific contribution / company / product awareness.
3. Implementation and execution of an ANZ registry of PHT patients – first report to sponsoring partners in Q1 2012
4. Development of an Awareness and Breathlessness campaign in conjunction with our sponsoring partners – execution in Q3 2011

Copyright 2011 by PHSANZ