This week’s guest blog is from Debbie Drell (formerly Debbie Castro). Debbie is PHA’s Senior Director of Volunteer Services and also serves as the Vice-Chair of the American Thoracic Society’s Patient Advisory Roundtable (PAR). PHA’s Board and Scientific Leadership Council have been interlocked over the years through medical leadership positions on the American Thoracic Society’s Board and Assemblies. Next year, when Debbie rises to PAR Chair, she will also serve on ATS’s Board, marking the first time we have had a PHA staff person and caregiver on that board. She will offer an important voice at ATS, America’s leading association for pulmonologists. We congratulate her and welcome the opportunity.
I hope you enjoy this blog, and Debbie’s take on this important medical meeting.
PHA prides itself on bringing together medical professionals and the patient community under one organization and one mission. As a PHA staff member who works primarily with patients and caregivers on support groups, I am excited when the opportunity arises for me to participate in a medical conference and bring a patient and community perspective to the meeting.
Last month, I had a lot of questions mulling around in my mind as I prepared to attend the American Thoracic Society International Conference in Denver:
- How do patients benefit from conferences solely organized for medical professionals?
- What takes place during these medical conferences and how does the networking and education trickle down to the patients they serve?
I wasn’t the only staff there, and I’ve been to medical conferences before. I usually represent PHA’s medical professional serving programs and stand at our organizational booth in an expansive (and expensive!) exhibit hall; but this time, I went “beyond the booth” and stepped into medical talks, networking meetings and sessions to experience the medical professional perspectives at the conferences.
I shouldn’t be here! I don’t have an MD or PhD on my name badge. I felt like a spy!
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| Debbie (left) and Kerri |
But the ATS conference actually has patient-serving programs, too. In fact, they are so dedicated to the patient population, they have a special advisory board packed with leaders from organizations serving disease populations that share the ATS mission for pulmonary, critical care and sleep disorders. Organization representatives span from well-known diseases such as asthma to rarer diseases such as scleroderma, pulmonary fibrosis and – you guessed it – PH! That photo on the right is me with my counterpart (Patient Programs Director) at the Scleroderma Foundation. Kerri Connelly is super dedicated and her mom had PH and scleroderma.
This advisory board is called the Patient Advisory Roundtable (PAR, for short) and it was founded, in part, by a PHA founder! Judy Simpson was at the
PHA “kitchen table” – a sister of a patient, but also a nurse. She brought the medical lens and perspective at PHA’s founding which really fomented PHA’s foundation of medical and patient unity under “one umbrella.” Many disease nonprofit organizations are patient-centered and their medical counterparts are separate entities, but that's not the case with PHA.
So it was natural and obvious for her to encourage the ATS to bring patients together, and both she and Rino were at “the other table” in Rockville, Md., when PAR was founded over a decade ago.
I’m a member of their PAR group and can tell you that they integrate patient perspectives and community voices in so much of what they do. At this conference, they hosted a day-long patient education event called
“Meet the Experts,” which bridged a range of diseases with universal talks on topics such as integrative health, air quality, clinical research, pulmonary rehabilitation, genetics and environmental concerns. After two hours of all the patients coming together for these talks, the groups split up, and PHA hosted a panel talk just for PH patients and their families. More than 260 were registered to attend the overall event, and 50 PH patients and caregivers participated in PHA’s special PH session that featured PH specialists:
The PH session had the largest attendance of all of the PAR member disease-specific sessions offered.
Obviously, patients gained medical knowledge and support by connecting with other patients at this special meeting. But what about the general medical conference? More than 10,000 pulmonologists gathered in Denver.
How did PHA interact with them? How does this affect patients (if at all)?
First, we took advantage of the fact that a critical mass of PH doctors and nurses would be at this meeting – so we held special meetings for PHA medical leaders who were in attendance:
- PHA brought together the medical professionals involved in the editorial committee for Advances in PH, our quarterly medical journal. We are so much more effective with time during face-to-face meetings!
- The many medical professionals who lead PHA’s Early Diagnosis Campaign came together as a committee and discussed how to leverage ATS and other networks to better raise awareness and educate medical professionals about PH. Among the highlights: the Early Diagnosis Subcommittee for Disadvantaged Patient Populations is currently in the process of submitting proposals for a White Paper. This subcommittee was created at last year’s Early Diagnosis Campaign all-committee meeting at PHA’s International PH Conference and has grown rapidly over the course of the past year.
- PHA’s President Rino Aldrighetti, PHA’s Medical Services Sr. Director Michael Patrick Gray, and PHA medical leadership met with the International Society for Heart and Lung Transplantation (ISHLT) leadership to discuss increased partnerships and the creation of a PH Symposium at their next meeting. They also met with medical leadership of PPHNET, a group of PH pediatricians, to discuss ways we can work closer together to achieve our common goals.
In addition, PHA and PH were highlighted during the ATS conference:
- …in an award ceremony! PHA’s Scientific Leadership Council Distinguished Advisor, Dr. David Badesch, won the William J. Martin II Award, and his excellence in contribution and service to patients was highlighted at multiple award ceremonies.
As you can see from this very partial overview, these meetings help us increase medical professional awareness and education around PH, and this will ultimately, over the span of years, contribute to a shorter duration from symptoms to diagnosis and reduce the time patients spend in the cycle of misdiagnoses.
At these conferences, the results of research are often presented as well as significant reports of ongoing research.
PH was discussed in many sessions, including a presentation on the results of a clinical trial comparing initial combination therapy with ambrisentan (Letairis) and tadalafil (Cialis) versus monotherapy for patients with pulmonary arterial hypertension.
After all was said and done, I still went back for some “booth duty” and enjoyed seeing doctors donate to PHA through participation in a game show at Bayer’s booth and through a photo booth at Actelion’s booth.
