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.
Pulmonary Hypertension Association Registry Gives People Living with Deadly Lung Disease a Chance to Advance Patient Care
Silver Spring, Md. (March 23, 2018)
The Pulmonary Hypertension Association (PHA) patient registry is giving more than 500 people with two deadly, often-misdiagnosed breathing diseases a way to advance patient care – for themselves and others. The national nonprofit established the PHA Registry (PHAR) in 2015 as part of its PH Care Center (PHCC) accreditation program, launched a year earlier to raise the overall quality of care and improve long-term outcomes for PH patients.
PH is a general term for high blood pressure of the lungs. One form of PH, pulmonary arterial hypertension (PAH), is characterized by blood vessels in the lungs that become stiff and narrow, causing enlargement of the right side of the heart as it works extra harder to move blood through to the lungs, which can lead to right heart failure and death. Common symptoms are non-specific and include shortness of breath, fatigue and chest pain. Consequently, this progressive disease is often misdiagnosed—for example, as asthma—resulting in delays in proper diagnosis and treatment and costing patients valuable time. PH can be associated with many rare diseases—for example connective tissue diseases such as lupus and scleroderma, HIV infection, sickle cell anemia—as well as more common conditions and exposures such as congestive heart failure, COPD, liver disease, methamphetamine use, and other illnesses.
The PHAR is a multi-center, observational registry that measures quality of care in newly diagnosed patients at PHCCs with PAH or chronic thromboembolic pulmonary hypertension (CTEPH), two forms of PH for which targeted treatments are available that can extend and improve patients’ lives.
“The PHA registry serves as a great tool to help newly diagnosed patients learn about the necessity of standards of care and the importance of receiving care at a PHA accredited site,” said Martha Royse, APRN, MS, research coordinator at Kentuckiana Pulmonary Associates, a PHAR-participating PHCC. “The registry is not only an introductory way for our patients to learn about the need for research about this rare condition, but also marks the patient’s initial involvement in the journey toward curing this disease.”
As of March 2018, 509 patients cared for at 31 adult PHCCs and three accredited pediatric centers are enrolled in the PHAR. PHAR-participating PHCCs are among a larger network of 54 centers – 46 adult facilities and 8 that treat children – designated as PHCC Centers of Comprehensive Care (CCCs). With the recent addition of three Regional Care Program (RCP) – designated PHCCs, a total of 57 centers in 28 states are now PHA-accredited.
PHAR centers collect information when a patient who is interested in participating is initially diagnosed with follow-up data processed at approximately six-month intervals. In addition to measuring quality of care — including assessing differences in centers’ adherence to evidence-based guidelines and establishing benchmarks for health outcomes — the PHAR helps determine the relationship between expert recommended care strategies and patient outcomes. The PHAR gives participating centers a platform to perform their own research and quality improvement initiatives and assess patient-reported outcomes, including health-related quality of life. Each PHAR site may access its own data in real-time, enabling the center to compare its performance to others in the registry. PHAR sites collect and enter patient-reported outcomes, including two health-related quality-of-life surveys, as well as data such as exact diagnosis and hospitalization rates. To view all PHAR-participating sites, visit https://phassociation.org/phar/clinical-sites/.
By mid-2018, PHA’s PHCC program will release its first PHAR annual report, which will include diagnosis, treatment, overall health, demographic, lifestyle, health insurance information and other data points that could be helpful in advancing the care of people with PH.
“Each patient is reminded of their contribution to the PH community every time they follow-up in the registry,” Royse said.
PHAR participation is open to any accredited PHCC that wishes to enroll patients newly diagnosed with PAH or CTEPH. PHAR centers may author scientific manuscripts using registry data; access their own raw data and real-time center-level summary information for national benchmarking; compare real-time statistics on their center to PHAR averages; and use the registry for local quality improvement initiatives.
About the Pulmonary Hypertension Association (USA)
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at facebook.com/PulmonaryHypertensionAssociation.
PRESS CONTACT:Jordan Jennings JordanJ@PHAssociation.org
International Centre for Allied Health Evidence
Information courtesy of the Lung Foundation Australia.
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