The Pulmonary Hypertension Association’s Scientific Leadership Council, 28 global leaders in the field of pulmonary hypertension, have spearheaded the PHA-Accredited PH Care Centers (PHCC) initiative to establish a program for accreditation of centers with special expertise in pulmonary hypertension (PH), particularly pulmonary arterial hypertension (PAH), to raise the overall quality of care and outcomes in patients with this life-threatening disease.
Why Accreditation is Needed
Once considered rapidly fatal, PAH can now be treated with many medications, all developed in just the past two decades. Despite medical advances, the median time from onset of symptoms to PAH diagnosis is still 1.1 years, and many patients will see three or more different physicians over this period before they are properly diagnosed. Since early 2011, PHA’s Scientific Leadership Council has developed the PHCC initiative to assure outstanding care in pulmonary hypertension.
The PHA-Accredited PH Care Centers (PHCC) program is an initiative of PHA’s Scientific Leadership Council to accredit centers in the U.S. in order to raise the level of care for individuals with pulmonary hypertension (PH). Accreditation is based on a center’s overall commitment to PH patients, breadth of involved health care professionals and scope of services provided.
How to Find a PH Specialist In the PHCC Network
PHA has created a map to assist in locating a PHCC near you.
Map of accredited PH care centers
PH specialists in the PHCC network also can be found in our Doctors Who Treat PH directory. They will be designated as part of an accredited PH program in your search.
How PH Care Centers Are Expected to Improve Your Medical Care
- Patients are better informed about comprehensive PH care
- Patients have improved access to Centers with expertise in PH
- Patients experience less time between symptom onset and diagnosis
- A medical community better informed about standards of PH care
- Therapies are appropriately used to improve long-term outcomes
- Increased opportunities for collaboration between Centers for clinical care and PH research
The Two Types of Centers
Two types of centers are accredited: Centers of Comprehensive Care (CCC) and Regional Clinical Programs (RCP). Both accredited CCCs and RCPs will have demonstrated a commitment to providing expert-level care based on pulmonary arterial hypertension (PAH) consensus guidelines.
Centers of Comprehensive Care
A PHA-Accredited Center of Comprehensive Care is a highly organized, full-time PH Center that proficiently evaluates PH patients based on published evidence-based guidelines and also provides expert treatment of pulmonary arterial hypertension (PAH) patients with all of the FDA-approved therapies. CCCs also make important contributions to PH research and education.
Regional Clinical Programs
A PHA-Accredited Regional Clinical Program is a regional PH Center that proficiently evaluates PH patients based on published evidence-based guidelines and also provides expert treatment of PAH patients with all non-parenteral therapies. An RCP must collaborate with its regional CCCs by referring patients that may benefit from opportunities unavailable at the RCP, including the initiation of advanced parenteral therapies and participation in clinical research protocols.
Developing and Implementing the PHCC Program
In September 2011, members of the PHA Board of Trustees, the PHA Scientific Leadership Council, and other key stakeholders in the PH community approved the PHCC initiative in concept. A steering committee and task forces were organized and staffed to address accreditation criteria, program implementation, registry development, communication to key stakeholders and financial sustainability. The members below provided valuable contributions, which include: researching, accumulating and documenting information, developing logic models, defining action steps, building financial projections and validating the program content.
|Murali Chakinala, MD (PHCC Chair)||Washington University in Saint Louis|
|Richard Channick, MD||Harvard Medical School|
|C. Gregory Elliott, MD||University of Utah|
|Serpil Erzurum, MD||The Cleveland Clinic Foundation|
|Karen Fagan, MD||University of South Alabama|
|Michael Patrick Gray, MPH||PHA|
|Wendy Hill, RN, MSN||VA Greater LA Healthcare System|
|Steven Kawut, MD, MS (Patient Registry Task Force Chair)||University of Pennsylvania|
|Vallerie McLaughlin, MD||University of Michigan|
|Stephen Mathai, MD, MHS||Johns Hopkins University|
|Olivia Onyeador, MHA||PHA|
|Ron Oudiz, MD (Criteria Task Force Chair)||Harbor UCLA Medical Center|
|Abby Poms, RRT, RCP (Implementation Task Force Co-Chair)||Duke University|
|Jeffrey Sager, MD, MSCE||Cottage Hospital|
|Robert Schilz, DO, PhD||Case Western Reserve University|
|Traci Stewart, RN, MSN||University of Iowa|
|Darren Taichman, MD||University of Pennsylvania|
|Victor Tapson, MD||Cedars-Sinai|
|Corey Ventetuolo, MD, MS||Brown University|
|Joel Wirth, MD (Implementation Task Force Co-Chair)||Maine Medical Center|
|Roham Zamanian, MD (Funding Task Force Chair)||Stanford University|
PHCC Initiative Mission Statement
The purpose of the PHA-Accredited Pulmonary Hypertension Care Centers (PHCC) initiative is to establish a program of accredited centers with expertise in pulmonary hypertension that aspires to improve overall quality of care and ultimately improve outcomes of patients with pulmonary hypertension, particularly pulmonary arterial hypertension, a rare and life-threatening group of diseases.
Why the Need for Accreditation?
Despite the availability and success of PAH-targeted therapeutic options over the past two decades, there are still shortcomings with the diagnosis and management of PAH. One recent study observed that expert recommended diagnostic algorithms were not being followed to completion in up to 94% of PAH patients, and nearly 60% of PAH referrals to expert centers already on therapy were on so contrary to published guidelines. In addition, despite the available medical therapies, long-term outcomes are still not optimal as many patients still die from PH, require transplantation or require hospitalization.
PH Care Centers: What You Need to Know
Two types of centers are be accredited: Centers of Comprehensive Care (CCC) and Regional Clinical Programs (RCP). Please note that applications for Pediatric Regional Clinical Programs are not currently being accepted. Learn more about the PH Care Centers initiative:
- Application Process
- Accreditation Criteria
- Frequently Asked Questions
- Informational Webinars
- PHCC Medical Leadership
- Get Involved
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Accredited PHCCs have the opportunity to enroll PH patients into the Pulmonary Hypertension Association Registry (PHAR). A patient registry is an organized system that collects data to evaluate certain outcomes for a population of people with a medical condition (like PH) and is a useful tool for learning more about rare diseases.