Wednesday, October 15, 2014

PH Care Centers (PHCC) and the Patient Registry

The PH Care Centers Program and the PHA Patient Registry mark a major milestone in our community's fight against this terrible disease. Over the next 18 months as PHA takes applications and begins to review and accredit sites, we know this process will lead to a trusted quality of care for patients. So far, PHA has received 19 applications from medical institutions and is receiving new applications each week. I have asked Olivia Onyeador, PHA's PHCC Program Manager, to talk about the milestone we met with this program this fall.

At PHA, when we say that “Our mission is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness,” we mean just that. One “way” that has been carefully planned, heavily researched and recently launched this September 2014 is through the Pulmonary Hypertension Care Centers (PHCC) Program. Colloquially referred to as the PHCC Program, PHA’s Scientific Leadership Council and various PHA medical leadership and staff created this initiative as a way to improve the overall quality of care, and in turn the outcomes, of patients with PH.

The program aims to promote diagnostic and treatment standards. One goal of the program is to provide benefits to patients, families and caregivers by increasing awareness of expert care and access, increasing education and support, and developing more opportunities for participation in clinical research.

Part of the value of the PHCC is the commitment of future accredited Centers to provide the highest standard of care, based on PH consensus guidelines, to patients receiving treatment at each accredited Center. As a part of the PHCC, Centers will eventually participate in a PHCC Patient Registry, a vital part of this program’s commitment to patient-centered research. Data from this registry will help to inform future guidelines and best practices for the care and treatment of PH patients.

Currently, six sites have been accredited through the PHCC Pilot Site Program. The purpose of the Pilot Site Program was to solidify the accreditation criteria and guidelines set forth for PH programs applying for accreditation and to refine the process of reviewing future applicant Centers. The PHCC review and application process is slightly rigorous as the intention is to ensure patients at accredited Centers are receiving expert level care. After a Pilot Site review at the University of Pennsylvania PH Pulmonary Vascular Disease Program, Dr. Steven Kawut commented that the site review “highlighted our educational efforts at various levels and made us re-evaluate quality improvement initiatives and ways to improve the patient experience.” As the PHCC Program grows, it is of utmost importance to continue to stress the necessity of quality improvement in the field of PH in an effort to decrease the misdiagnosis and mismanagement of PH patients.

Although I have been with PHA for less than a year, I realize that I am only a small piece of a large, ongoing movement in the PH community. This movement includes everyone touched by PH and is growing each day. As we look to the future, and the ability to glean valuable data from the PHCC Patient Registry, we look to build upon current standards and guidelines to aid in the fight against PH.

The PHCC application was launched on Monday, Sept. 29. It is now open to the public for submission and available for download.


  1. Where are the 6 pilot sites in operation?

  2. So exciting to finally have specialists who are being evaluated by the PHA, making sure they are the best of the best!!! I'm certain Johns Hopkins Hospital's Dr Mathai will be listed on the PHCC website!!!