Membership to our organisation has always started with us recording your details given over the phone or through our website. We like to ask certain questions and find out particular information in order to make sure that we serve your individual needs as best we can. Knowing what type of PH you have and your individual PH medications enables us to ensure we send you the appropriate resources and include articles in our magazine, website, and Facebook pages around the areas of PH that affect most people, and within our membership in particular.
We have had discussions with a few other organisations, and as we are a Health Consumer Group, meaning we all use and consume health services, it is of interest to some of these groups' some of our details in particular. Such as, you ask? Well, for starters we get included in health surveys, writing letters of support that go directly to some government bodies to promote new medications being placed onto the PBS, opportunities to have our medications delivered to our doors for free and more. In order to bring about some of these services they often need certain statistics about the PH community. It is often a slow process but PH is a growing field that is getting a lot more attention and as such we want to be a part of this with input from the patient perspective.
We have recently upgraded the PHNA registry to include all of Australia now that we are a national body. We also thought we would remind you that you have the opportunity to record your statistics and in turn have a stronger voice when it comes to helping with feedback to health professionals and other organisations when planning for future projects, making sure you have the right information and resources for your individual needs and more.
All your details are strictly confidential and are held in trust by the administrator for our site. None of your personal details are ever shared. If we are asked to participate in a survey that includes feedback on certain areas of PH these statistics will only be shared with your advance permission (given on the registration form), and they are anonymous. If an outcome requires personal contact with the patient/carer/member we would contact you on their behalf and make you aware of the situation and then you can take it from there. We generally contact members and affiliates through their email addresses as most of these services are only accessible online. NOT ONLINE? No need to worry we are old school too, please contact PHNA directly and we can assist you with this. CLICK
Hello and welcome to the PHNA pulmonary hypertension national PH patient registry.
By sharing your details about your individual circumstances it allows us to keep private statistics and as such we know where to concentrate our support, education and information sharing.
Who sees my details?
Only the PHNA team administrators will see your details. They will not be shared with anyone without prior consent. The only information that may be shared anonymously is the type of PH you have and your PH specific medications.
What else can you do with my information?
By providing your personal information it allows PHNA to send you the PH Patient Pack and resources that pertain to your individual PH needs.
You will be informed about the dates for the yearly support group gatherings. Our special events, fundraising projects and other programs that we are involved in and would like to invite you to attend.
We can sign you up for membership, which is free, invite you to subscribe to our quarterly magazine, PHan Mail and any electronic newsletters that are developed in the future so you can stay up to date about all that is happening in the PH world here at home in Australia and globally.
We can also assist you with information about other organisations that may be able to help you live better with your PH. If you have any questions please do not hesitate to contact us directly HERE.
Pulmonary Hypertension Network Australia is a non profit small but valuable team of volunteers all working towards improved support, education and resources for people living with PH. We are entirely self funded and some of our board members are also patients and carers. We endeavour to provide you with the most up to date and accurate information as we strive to improve the services nationally in cooperation with other major organisations, so that we can provide whatever reasonable amount of support we can to you. Thank you for your participation.
International Centre for Allied Health Evidence
Information courtesy of the Lung Foundation Australia.
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International Centre for Allied Health Evidence Member of Sansom Institute
University of South Australia
GPO Box 2471
Adelaide SA Australia 5000
Telephone: +61 8 8302 2072
Fax: +61 8 8302 2853
Director Professor Karen Grimmer
iCAHE members and staff iCAHE is comprised of School of Health Science employees, researchers who are employed directly by iCAHE on project moneys, and higher degree research students. The School of Health Science employees self-nominate into research categories of active, aspiring and teaching only. iCAHE research area teams are led by active researchers employed by School of Health Science, or iCAHE project staff members.
International Centre for Allied Health Evidence - A global initiative in improving the quality and safety of allied health care. Our mission is to contribute to better health and wellbeing for all through evidence-based allied health care
iCAHE works locally, nationally and globally to create new knowledge and translate evidence into safe, quality health care. We partner with researchers, clinicians, educators, policy makers, government, industry, professional and consumer groups and the broader community.
iCAHE provides a wide range of tools, services and resources to support health practitioners, service managers, policy makers, consumer representatives and researchers translate evidence into policy and practice.
See the iCAHE 2014 Activity Report
See the iCAHE 2015 Activity Report
What do you know about health and your health records and what do you need to know?This survey is exploring how Australians find out about health issues, what sources of information they rely on to support their own healthy behaviours and how that impacts on the way they understand and feel about systems of shared health data.
The survey takes up to X15 minutes to complete.
Take the survey online
If you require a paper copy – e.mail the centre at iCAHE@unisa.edu.au and we will forward a copy
iCAHE Learning Hub iCAHE Research Hub Quality care research and resources Research Area TeamsiCAHE Online Resources Scientific and Allied Health Newsletter
iCAHE Research Area TeamsResearch areas of iCAHE
There are eight key research areas in iCAHE:
Collaborators and Students
Affiliated Research Groups, Collaborators and HDR Students
iCAHE is affiliated with a range of international research groups. iCAHE also has research links with many individual collaborators, both staff within the Health Sciences Department at the University of South Australia, and from industry and other universities.
For current postgraduate students and information on their projects got to the iCAHE HDR Students and Projects page. For individuals interested in undertaking postgraduate studies with iCAHE, check the Division of Health Sciences Health Research page.