myPHA: A Legacy of Connection Blossoms Online

This week’s blog is written by Olivia May. Olivia has been working hard as part of the team developing myPHA. This new multi-purpose communications system for PHA has been designed to make it much easier to find what PHA offers that is of interest to you specifically and to better connect members with common interests. Put another way, you tell us about your interests, and myPHA will focus on getting you what you’re looking for. 

PHA has been built on communication and community. myPHA is the newest embodiment of those values. We all hope it will bring new information, connections and opportunity. I encourage you to join the hundreds of myPHA  members who have already signed up for this great new service during its inaugural month!

PHA's Founders at the Kitchen Table

As well-known as the story is, it’s difficult to write about PHA’s new online community without acknowledging our origins. The founding of PHA as a support group of four gathered around a kitchen table is a powerful image that remains at the center of our mission and efforts. Connecting patients and caregivers to each other was the first step in creating the organization that exists today – but that doesn’t mean it’s no longer a part of our work. Reaching out to those affected by PH is an ongoing project that is essential to making our resources available as well as maintaining a close understanding of our community. Making it possible for one patient to talk to another is no less important now than it was in 1991; however, we now have ways of doing it that have broadened our reach and united our community on an unforeseen scale.

Our new online patient community myPHA is the latest development in these efforts. Unlike the founding members, patients diagnosed today are often using the Internet as their primary means to finding information as well as finding others like them. According to a 2013 Pew Research Study “Health Online,” 1 out of 3 Americans have gone online to figure out a medical condition. Seventy-two percent of Internet users say they looked online for health information of one kind or another within the past year. With these numbers in mind, it’s easy to see how essential PHA’s online resources are to newly diagnosed patients as well as those who are already connected to us. And our online presence isn’t only a starting point to establish contact – for many, engagement with PHA happens exclusively online.

PHA created myPHA to offer a virtual home to our community. That meant we had to ensure a level of technical sophistication that would support the diversity and strength of our members. The PH community interacts in a variety of ways, for a variety of purposes. Some see the value in sharing their story as a singular message of hope, while others prefer to engage one-on-one. We chose the platform that hosts myPHA to honor the many styles of support that we already saw happening and to bring them together in one online “place.” myPHA is now home to

• a community-wide discussion board, 
• an interactive blog archive, 
• customized resource lists, 
• groups that are private to specific sub-communities, 
• and more! 

Best of all, it’s flexible to the changes that are sure to come as our community continues to grow and sprout new ideas and practices. Read the spring Pathlight article for FAQs and other details about myPHA

Throughout the process of designing and launching the site, we’ve received indispensable feedback from PHA PHriends, Board Members, support group leaders, and other involved patients and caregivers. We made it a priority to let the community perspective guide the major decisions of the site as we built it out, and that shows today. From the Groups and Blogs down to the design details, this is an online community that was shaped by and for PH patients and caregivers.

It has been a unique honor and pleasure to watch the site take flight. Since launching on April 10, 2015, myPHA has exemplified the PH community’s powerful ability to adapt and come together in new ways. Today, more than 600 members are registered on the site. We see the importance of this virtual resource every time a member joins and connects with others like them for the first time. Now, a patient diagnosed in a geographically isolated area can be immediately connected to an email mentor, information about their type of PH, a private group of patients like them, an informative discussion forum, a list of members living in their area and a collection of patient narratives. This is an enormously different experience from that of a patient diagnosed 10 years ago, and we will continue to work hard to improve that experience in any way we can. We hope that myPHA will continue to grow and provide a bustling home to the learning, support and connection that our community needs and provides. Connect with myPHA now

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.  

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.