Resource Library
Here you’ll find more answers to your questions
What's in the library
Here are downloads of tips and guidance, plus we’ve added some helpful documents, so you don’t have to search for them. To save you time, we’ve focused on documents which answer questions that arose during PVI workshops (especially if they come with a good diagram).
Why is it grouped
To make it easier to find what matters to you, information is sorted into three groups: information for patients; carers; and patient groups. Don’t like being put into a box? Select ‘All’ to see everything on the site.
useful sites
Having trouble finding a decision-makers site? Here are some useful links.
Tip Sheets and Guides
IQVIA White Paper – Access to New Therapies: Perspective and Best Practice on Australian Early Access Mechanisms
Introduction
Access to required medicines is considered part of the Right to Health, which was declared a social right in the World Health Organization Constitution (1946) and the United Nations’...
Preparing for PBAC Consumer Comments – patient groups
A tip sheet explaining how to prepare for making Consumer Comments before a medicine of interest is listed on the PBAC agenda. Also contains useful information about making a comment.
...Ethical issues for patients groups to consider when collecting and reporting information for HTA submissions
A check list to help patient groups reduce the possibility of causing harm when collecting and reporting patient information. A longer guide is also available which may clarify issues further.
...HTAi guide for patient groups on collecting and reporting information for patient group submissions (HTAi)
This large, detailed guidance is based on work done in Canada by pCODR. It’s valuable reading for patient groups collecting and report information for input into PBAC.
...QALYs (National Health Council)
If you prefer to listen than read, this National Health Council (USA) educational module provides a clear and detailed explanation of QALYs.
...Guide to lingo (National Health Council)
If you prefer to listen than read, this National Health Council (USA) educational module provides clear explanations of 11 common assessment terms.
...It would be beneficial for the community if there was a way for us to help provide information to our community. However for us to do that we would need to have access to the information.
– Vanessa Richards, Marfan Syndrome patient, Rare Disease Advocate and Secretary of the Marfan Association of Queensland
We need all this on a website, so we can share it online.
– Patient participant at PVI workshop
Useful sites
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