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.  

Conference 2014: a road trip with PHA leadership...

It's coming...

PHA's 11th International PH Conference will be held June 20-22, 2014.

Last week, PHA's Conference Planning Committee met at the Conference site - the J.W. Marriott in Indianapolis, Ind. - to begin its work. Hosting a Conference for 1,500 of our closest friends is no small task ... it is a 15-month effort, this time led by Linda Carr and Rita Orth.  Linda's daughter Hannah was diagnosed at 5 and is now a married college graduate who is raising her adopted daughter.  Rita is a nurse and patient from California who has been living with PH for a number of years.

It's important for as many of PHA's leaders as possible to get to know the Conference hotel, so the Planning Committee wasn't alone last week. More than 50 PHA leaders and staff were at the Marriott for various meetings.

Looking at those meetings gives a pretty good picture of how PHA is governed and moves forward.

On Thursday, March 14, the first meetings began. PH Professional Network (PHPN) is PHA's membership group for nurses, pharmacists and other non-MD medical professionals. The PHPN executive committee members spent a good part of the day planning and discussing their upcoming Symposium - a three-day meeting that will provide education to more than 400 of their medical members. They are also active in producing web-based educational content for nurses, pharmacists and respiratory therapists on PHA Online University.

On the same day, four medical committees, who have spent the past 18 months planning different aspects of a new PHA program to accredit PH Centers of Care, held a workshop to refine their plans and discuss their thinking across committee lines.

This was followed on Friday by PHA's Scientific Leadership Council (SLC) meeting. The SLC is PHA's highest level medical leadership body. Among many other items, the SLC had the opportunity to hear and discuss the Centers of Care committee proposals. Another important discussion took place as a result of the many educational programs being delivered through PHA. The SLC arrived at some conclusions on how it can better coordinate these programs to offer greater value.

PHA's Board committees began their meetings Friday afternoon. The Conference, Strategic Planning and Governanace committees all had lively discussions in preparation for the weekend's Board of Trustees meeting. The Saturday and Sunday Board meeting covered a wide variety of issues from insurance and PHA's developing Specialty Pharmacy Review Board to the Early Diagnosis Campaign and support groups. Good discussions were held related to PHA's sustainability efforts in connection with our Chapters (New York, Midwest and San Francisco) and recently strengthened Development program. A highlight of the weekend was a visit with the Indianapolis PH Support Group which was meeting in the same hotel.

Every one of these patient, caregiver and medical leaders is a volunteer. It is a tribute to the strength of this community that so many (in these leadership groups and beyond) are doing so much to advance the fight against PH.

So, all in all, more than 50 Board members and staff did their important work ... and got to know our Conference hotel at the same time! We're ready to host PHA's 11th International PH Conference! (Well, actually, after another 15 months of exciting work!)

Different notes, same page...

We always talk about PHA as a community of patients, family members and medical professionals.  Easy words, but expalining what that really means, that's harder.

Let me give it a try through the lens of PHA's leadership meetings.

Twice each year, PHA's leadership meets to discuss issues that keep the organization moving forward.  They are all volunteers who contibute of their own time and talents.  The most recent meeting was in Orlando (the city where we'll be having our Tenth International Conference in June).

Those leadership meetings occur in three parts...beginning on Thursday and continuing through Sunday.

The first is the PH Professional Network's Executive Committee.  These elected officers and committee chairs provide direction and leadership for over 1,100 nurses, pharmacists, respiratory therapists and other allied health professionals who are in membership.  What does that mean in practice?

Well, here's one example.  Stephanie Harris, Chair of the Education Committee, spoke about the recent publication of PHA's new EMS brochure.  It was written by PHPN volunteers serving on her committee, so that emergency techs coming to PH patients' homes would know how to work appropriately with a PH patient in crisis.  The brochure is  designed with a magnet to be placed on a refrigerator...where emergency technicians are trained to look for infoirmation.  Filling a great need, thousands have already been distributed.  Because medical professionals donate their time and expertise, PHA can make this brochure and other material available free.

After this day long meeting - with conversations and planning about activities ranging from the PHPN and PHA Conferences, a mentoring program, patient support programs, medical education, strategic planning and much more - ended, it was time to move on to the Scientific Leadership Council the following day.

The Scientific Leadership Council (SLC) is comprised of 27 physicians from six nations, all at the highest level of the field.  They are linked to the PHPN Executive Committee with the PHPN Chair (Louise Durst of the Mayo Clinic) having a voting role and to the PHA Board of Trustees through a patient liaison.  Harry Rozakis has just rotated off that role, replaced by Rita Orth.

When a new member comes to the SLC, I often will ask them if the meetings are what they expected.  Usually, the answer is that they thought it would be more about the science but quickly understood that it's much more about building the structure of the field.  That's particularly important in a complex specialty that has grown from about 100 treating physicians to over 10,000 in little more than a dozen years.

The SLC spent a lot of at their recent meeting discussing and planning management of PHA's multiple medical education activities, a new procedures document for Flolan use, PHA's research programs, the development of new guidelines for screening and diagnosis of PH patients with connective tissue disease, progress on our pediatric programs and a variety of other issues.  Dr. Bruce Marshall, the vice president of clinical affairs at the Cystic Fibrosis Foundation also gave a great presentation, helping PHA's medical leadership understand how that 50 year old organization has helped to develop important structure for patient care and research in their field.

While the SLC meeting was continuing on Friday, PHA board committees were also gathering in various rooms throughout the hotel.  The Conference Planning Committee, Strategic Planning Committee, Development Committee and Governance Committee all had important items to discuss. Those ranged from the many, many details related to our complex Conference and Scientific Sessions (150 or so invited speakers, including over 120 medical professionals come as volunteers covering all their owen costs, including registration) to working on continuing sustainability and clear direction for this structure called PHA that has been built to support the patients, families and medical professionals who live with PH.

The Board of Trustees meetings began on Saturday and continued into Sunday.  Led by Laura D'Anna, the board includes 23 patients, family members and medical professionals who live or connect daily with this illness and dedicate their efforts to create a better future for PH patients. The board is also fortunate to include the surviving founders as emeritus members. You can click on the board members names to find out more about who they are.

An important part of how the board functions is that its various leadership structures are tightly connected and reflect various parts of of the community.  The chair, chair-elect and immediate past chair of the Scientific Leadership Council have seats on the board.  So do the chair and chair-elect of PH Professional Network.  Six support group leaders are on the board.  There are four board members whose children were diagnosed at very young ages...as well as two PH pediatricians. And there are seven patients and six caregivers.  There are three who continue the fight in memory of a loved one.

While the board deals with a broad range of issues, this meeting included discussion of (among other topics) how we can use our assets to more effectively build public awareness of PH, better help patients and families deal with issues of life changes after diagnosis and, of course, make the upcoming Conference a life-changing event for those who attend.

So that's a quick picture of how PHA's volunteer leadership fits together across what has become a complex structure to provide oversight and planning and keep us in sync.

Leadership meetings...

Last Wednesday, I flew to Orlando, Florida for a meeting marathon.

Twice each year PHA's Board of Trustees meets face-to-face.  Often, because there are connections between our board, Scientific Leadership Council and PH Resource Network Executive Committee we hold these meetings in sequence.  It's a lot of work but builds connections across PHA's various leadership structures and saves on travel costs.

All three meetings (plus a few committee meetings) were held in sequence this time for a special reason.  Our meeting site was also a test of the site for our 2012 International PH Conference and Scientific Sessions (June 22-24, 2012).  The Renaissance Orlando at Sea World looks like it will be a great host for our community.

The PH Resource Network was the first of the meetings, held all day on Thursday. A big part of that conversation was the 2011 PH Resource Network Symposium which will include almost 30 sessions for allied health professionals.  Another important discussion was held around the group's rapid growth.  PH Resource Network is a professional association within PHA for allied health professionals.  With over 900 members they have grown to include many specialties (pharmacists, respiratory therapists, physicians assistants, nurse practitioners, and so on) beyond the RNs who were the original members.  Building programs and a welcoming environment within the group's umbrella is becoming increasingly important.

On Friday, PHA's Scientific Leadership council met for a rich and full day.  Their focus was a review of our current research programs, our medical education programs and providing more valuable information for patients and their families in how to work with their medical professionals.

The PHA Board met on Saturday and Sunday, discussing our goals for the year and much of our organization's wide-ranging programming.  An interesting aspect of the Board is that it interlocks all components of PHA for better and broadly viewed decision making.  Patients and family members participate with physicans from the SLC and allied health professionals from PH Resource Network.

The board was able to meet with members of the Orlando support group and a dozen support group leaders from around the state.  Fifty-two support group members attended.  There is no question they will be great hosts for our Tenth International PH Conference..as will Dr. James Tarver and his great team at the Orlando Medical Center.  Dr. Tarver attended the board meeting with his nuse practioner (and PH Resource Network executive committee member, Melisa Wilson.

The entire board was very excited about the meeting possibilites we saw in the hotel.  It will be great to come back to the state in which PHA was founded for our 2012 Conference.

I'd like to write a lot more but I have an early flight to San Francisco tomorrow for the Fourth International Neonatal & Childhood Pulmonary Vascular Disease Conference.  PHA will be filming many of the sessions to provide pediatric medical education on PHA's Online University website.

We do keep moving...

Stem cell treatments...

Sometimes there's science, sometimes there's guesswork, sometimes there's quackery...

Several months ago, in an effort to help patient understanding and navigation of the very new and untested waters of stem cell therapy, PHA’s Scientific Leadership Council produced a statement and fact sheet on this subject.

Recently, we heard from Nick Hill, M.D. who leads the PH Center at Tufts University. He wrote to make us aware of valuable new information for patients produced by the International Society for Stem Cell Research (ISSCR).  They offer three wonderful new tools: the Top 10 Things to Know About Stem Cell Treatments, the ISSCR Patient Handbook and How Science Becomes Medicine. We took these items to leadership of PHA's Scientific Leadership Council and have just posted mutual links with ISSCR to make this material available to you.

We hope they are helpful to anyone trying to understand the current state of the stem cell world..