Four Days in March...

Usually, we see things in pieces. Once in a while, we are privileged to see those pieces come together… to understand the greater whole.

The PHPN meeting on Thursday

During the course of four days beginning on Thursday, March 26, I had that opportunity. We began on Thursday morning with a daylong meeting of the PH Professional Network (PHPN) executive committee led by Melisa Wilson, a nurse practitioner from Orlando, Florida. PHPN, founded in 2000, is a structure within PHA to involve nurses, nurse practitioners, physician assistants, respiratory therapists, pharmacists and other non-MD healthcare professionals working in PH. It has become an essential and highly valued body for education and networking in the field. There was much discussion at the meeting about the upcoming PHPN Symposium. This event, which PHPN organizes every two years, has become the largest PH meeting of non-MD healthcare professionals in North America. Among many other topics, PHPN leadership also devoted considerable time to discussing the development of publications and supporting the quality and accuracy of PHA publications.

As PHPN continued its work in the afternoon, the PH Care Centers (PHCC) leadership began their meeting to discuss the new registry PHA is currently building. The registry is based on an understanding that PHCC accreditations can only achieve full value for the PH community when we look across all centers to create and share data to better understand what works best for patients. One of the compelling reasons for PHA to take the significant financial risk of building this registry was a review of the cystic fibrosis registry results. Over a 24-year period (1986-2010) during which there were no disease-specific treatments, patient survivability increased by over 11 years. While other factors, such as earlier diagnosis contributed to this advance, there is no question that shared knowledge of what works, flowing through the work of the registry, was an essential pillar of this success.

The Registry Committee of the PHCC, led by Dr. Steve Kawut of the University of Pennsylvania, is working to build a similar pillar in PH. It was gratifying to see that leaders of five registries working in PH came to this meeting to discuss creating a consistency of structure that would allow patient data to be used in multiple registries. If successful, this will allow more rapid development of knowledge in the field.

So that was our first day…

We began Friday with an all-day meeting of PHA’s Scientific Leadership Council (SLC). This international and globally-regarded group of medical experts in the field oversees PHA’s entire medical structure. This includes research, our multiple medical education programs, the development of our accreditation and registry structures, and the accuracy and relevance of the medical information we provide to patients and their families.

The SLC meeting had much discussion of the rapid progress we are making on the new PH Care Centers accreditation program. With a target of 60 accreditation reviews by the end of 2015, we have already completed 20, with another 20 submitted and being processed for more information or site-visits, and an additional 17 online applications in process of completion. A little over three months into the year, we are ahead of schedule.

Research updates related to PVDOMICS

A highlight of our research discussion was PHA’s new research partnership with the National Institutes of Health. This relates to the PVDOMICS program, the importance of which was described in a guest blog by Michael Gray.

While the SLC meeting continued, PHA’s Board of Trustees Committees began meeting in the early afternoon. The Development Committee discussed how to fulfill their obligations to help raise the funds for PHA to fulfill its mission. Harry Rozakis, a CTEPH patient, chairs the Development Committee.  

The Governance Committee also met. They are chaired by Laura D'Anna, a former PHA Board chair who lost her sister to PH. This Committee reviews PHA's bylaws - our organizational rules - and works to make sure the Board functions well to oversee all of the many issues in which PHA is involved.

The Strategic Planning Committee, chaired by John Hess, the parent of a child with PH, is charged with overseeing the development of our multi-year plan that tells us where we want to go so we have a direction to steer the organization.

A new committee also met: the Search Committee. They are charged with finding my successor as President/CEO when I retire after PHA's International PH Conference in 2016. Their first task will be to find a search firm that fits well with PHA's goals for the position. PHA's Board chair-elect, Roger Towle, the father of a PH patient, is leading this important effort.

To be clear on those goals, PHA's Board has to have strong focus. To assure that focus, they had an all-day session on Saturday with a consultant from Board Source. Board Source is the most highly regarded nonprofit organization dedicated to nonprofit management and governance issues. PHA is a pretty complex organization these days, much more so than when I started as the first staff person 17 years ago. Does the Board seek someone with a medical background, one in organizational development, corporate or nonprofit management expertise, or the ability to raise funds? Those (and more) are the kinds of questions that will define the next stage of PHA's growth.

The Saturday session was very productive in defining the Board conversation and led us into an abbreviated Board meeting on Sunday where many of PHA's medical and patient-serving programs where presented and discussed. The Board is led by Steve White, an Episcopal priest with a doctorate in health management. Steve lost his daughter to PH.

I should also mention that the Board had the opportunity to meet with over 100 Texas support group leaders and members who had come to the Dallas Omni where PHA will have our upcoming 2016 International PH Conference and Scientific Sessions. It was a great opportunity for the Board to meet our local hosts and share our common excitement about the Conference that will take place in PHA's 25th anniversary year!

In closing, I've always felt the all-volunteer PHA Board is a pretty good reflection of the PH community of patients, caregivers and medical professionals. The members put in a lot of time dealing with the many complex issues a rapidly growing organization must face. Seeing all the meetings I described flow from one to the other during our recent four-day span and understanding the interlocks between those meetings, my view is that PHA is not a series of activities but a single organization that connects those activities for maximum impact for the good of patients. It has always been my privilege to work for PHA.


WATCH for Rino's next blog: PHA's 12th straight Charity Navigator 4-Star rating.  

PHA Accredits 11 New Pulmonary Hypertension Care Centers

When I came to PHA in 1999, there were about 100 doctors in the U.S. treating pulmonary hypertension. Today there are more than 10,000. While that growth is good news, it’s also a call for clear standards to improve quality of care for patients. That is the purpose of PHA’s new PH Care Centers (PHCC) accreditation program. The program was launched on Sept. 27, 2014, after three years of organization and development by committees of leading medical professionals.

Today's news is that PHA recently accredited 11 Pulmonary Hypertension Care Centers, bringing the total number of PHCCs to 17, in a program that seeks to improve overall quality of care and ultimately improve outcomes of patients with pulmonary hypertension. This includes promoting improved diagnostic and treatment standards in the field of PH, while creating unique partnerships between accredited centers and PHA.

PHA is still a relatively small disease organization. For us to now be accrediting PHCCs is a great accomplishment. I believe this comes from our unique relationships with medical professionals and patient populations working together to find a cure for this devastating disease. We have come a long way in changing the trajectory of this disease and improving the lives of patients in the race for a cure.

These first phases of accreditation are open to centers applying as Comprehensive Care Centers (CCC). We expect that to result in more than 90 applicant Centers. (We are currently over 35.) In 2016, applications for Regional Clinical Programs (RCP) will begin to be accepted as RCP criteria requires collaboration with regional CCCs. By linking accredited CCC and RCP centers together, the program will improve knowledge among professionals and patients about where to seek quality care.

PHCC accreditation signifies that a PH program has demonstrated a dedication to making a proper diagnosis and has the capacity to appropriately and comprehensively manage PH patients through a set of criteria. Both CCCs and RCPs will be accredited by PHA after undergoing a thorough evaluation and satisfactorily meeting the respective standards set forth in the PHCC Criteria. In accordance with the program’s vision, all PHA-accredited PHCCs will be expected to uphold the principles of delivering appropriate and effective care, offering research participation opportunities and providing appropriate support to PH patients.

To see the full list of nationwide accredited PHCC Centers of Comprehensive Care, please visit our website.  In looking at this information, it's important for everyone to understand that this process is just beginning. Many excellent Centers have not yet been reviewed or begun the complex application process.  It will take well over a year for PHA to work through national-level accreditations, after which Regional Center accreditations will begin.

The PHCC online application portal was also launched this month with high interest in the program resulting in a steady increase of application submissions. Many site reviews are being scheduled for the coming months. Centers interested in applying can access the online application at the PH Care Centers Site Application Portal.


For additional information on PHCC and the application process, go to: www.PHCareCenters.org or email PHCC@PHAssociation.org.

Please join me in congratulating the newly accredited centers. With the hard work and dedication of these Centers, the diligence of the medical community and patient population to get the best care possible, and the work of our staff at PHA to coordinate initiatives and raise awareness about PH, we are closer to a cure than we have ever been.