4 Stars... Building Longer, Better Lives

Shortly after I came to PHA as its first employee in 1999, I was invited to attend an annual meeting that the National Heart, Lung, and Blood Institute of the National Institutes of Health organized for nonprofit organizations in NHLBI’s area of medical interest.

I was pretty excited to attend. It was my first chance to connect with other disease associations. I was hoping to learn something from them … and I did. During the breakout sessions, conversation was dominated by one disease that had four separate organizations. They were all shouting at each other and not accomplishing much. To my knowledge, that’s still the case today.

The lesson of the day for me was that PHA needed to be built as much more than an organization. It needed to be a community, a community that reaches across all constituencies whether they be patient, caregiver or medical. It was important that PHA be managed to its mission by people who could work in solidarity across the many issues that will make life better for PH patients. Fortunately, that lesson was consistent with our founders’ vision.

Does that approach of solidarity in community-building work? Well, there’s a lot that could be written about what PHA has accomplished over the years, but that will be for other blogs. This one is about people looking at this organization from the outside.

According to its Wikipedia profile, Charity Navigator was launched in the spring of 2001, with the mission of helping "donors make informed giving decisions and enabling well-run charities to demonstrate their commitment to proper stewardship" of donor dollars. Initially, Charity Navigator provided financial ratings for 1,100 charities. Charity Navigator currently evaluates more than 5,400 charities in the United States.

Due to their comprehensive review process, Charity Navigator quickly emerged as the most respected of the nonprofit evaluators. PHA became one of those evaluated charities in January of 2004, receiving their highest rating – 4 stars.

In April of this year, PHA received our 12th consecutive 4-star rating. As Ken Berger, Charity Navigator’s CEO, writes, “Less than 1% of the charities we rate have received at least 12 consecutive 4-star ratings, indicating that Pulmonary Hypertension Association outperforms most other charities in America….”

Our score this year, at 98.55 (out of 100), was our third highest ever.

PHA has also been recognized for excellence by many other organizations – including the Better Business Bureau, GuideStar Exchange, Independent Charities of America, Great Nonprofits, National Organization for Rare Disorders (NORD) and the Center for Nonprofit Advancement – based on a variety of standards.

We have accepted these awards as the validation of a system that is essential to success in a small rare disease state. That is, we move forward because of the strength and support of a single and powerful community: people like you, bringing the “power of one” to the table for the good of many.

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.