I was recently cruising the Internet looking to see what type of search results I would obtain when I put in the term “pulmonary hypertension specialist in Phoenix”. I was somewhat mortified. Every healthcare system in town had a webpage purporting to have a specialized program replete with a range of experts well versed in all aspects of pulmonary hypertension care. I thought to myself how blessed are the patients in Arizona to have a pulmonary hypertension specialist on every corner in every hospital. So I searched in different cities across the country and to my great surprise I found the same. It would seem that there are pulmonary hypertension specialists sprouting up all around the country.
After collecting myself from the disbelief that so many PAH experts are now scattered across the country I came back to reality. What does it mean when a hospital or a doctor’s practice advertises themselves as having a pulmonary hypertension program or being expert in the care of PAH patients? First, it reinforced my sense that most of what you read on the Internet is not to be trusted (this site notwithstanding of course). Second it reminded me that regardless of how much we would like to think otherwise, medicine is big business. Health care systems, hospitals and doctors’ practices are vying for your business, much like a restaurant is vying for your patronage. However, the downside of pseudo-expert care is much greater than a bad Italian meal or a taco that just was not up to par.
This made me reflect on how we measure quality and honesty in healthcare. How do we deliver the best care to our patients? Medicine in general is struggling with this question. We have board certifications that attempt to establish some minimal standard of knowledge. We have requirements to have completed the requisite lengthy training. But at the end of the day, some diseases really require true expertise to deliver the best outcomes for our patients. If you went to a surgeon with a life-threatening problem and the surgeon had seen 5 other patients with a similar problem in their career would you really want to be that surgeon’s sixth case? What is the magic number of patients? What type of infrastructure helps ensure that the best care will be delivered?
Perhaps what we really have is a crisis of honesty in America. Advertisers can claim almost anything they want about their products. Doctors can claim to have expertise that they most certainly don’t possess. Hospitals can claim to have programs that don’t exist simply to pull patients into their businesses.
Comprehensive Care Centers for Pulmonary Hypertension
The Pulmonary Hypertension Association has responded to this crisis by recognizing about 35 PH centers around the country as meeting a rigorous set of requirements to be called Comprehensive Care Centers (the highest designation). This designation requires an impressive commitment to pulmonary hypertension care.
Let me tell you about how my center earned this designation. First, the two physicians that care for PAH patients both have super-specialized training in pulmonary hypertension at nationally recognized powerhouse institutions. This was not a weekend course but a year of focused training. Second, we have developed an infrastructure that includes 2 dedicated nurse-coordinators, an administrative assistant, and a medical assistant. Next we have a research operation that includes five research coordinators. We have been amongst the busiest pulmonary hypertension research operations in the country for more than a decade.
The hospital where we practice has worked with us to develop a dedicated pulmonary hypertension ICU and a step-down floor. We have procedures and protocols for the care of our patients. The hospital carries all PAH medications and their use are restricted to PAH specialists. I have done well over 3,000 heart catheterizations to diagnose and monitor pulmonary hypertension patients. We have done more than 500 general anesthesia surgeries without a single perioperative death from pulmonary hypertension.
The PHA did not simply take my word for it either. They came and inspected the hospital and my practice. They audited my charts to make sure that I was actually delivering the care that I said I delivered. They inspected all of my procedures and protocols for the care of PAH patients. Then they went away and discussed my program. A few weeks later we received a letter indicating that we had met the rigorous criteria to be a nationally recognized center of excellence (Comprehensive Care Center).
Our commitment to PAH includes a deep commitment to education and advancing the science of caring for PAH patients. My partner and I speak across the country on pulmonary hypertension. We publish in high quality peer-reviewed journals and present at national meetings on pulmonary hypertension. We run an annual educational symposium at our hospital for nurses and physicians. Lastly, I maintain a website that reaches thousands of viewers each month.
A word of caution–I would be skeptical of doctors that advertise that they give talks about PAH. The bar is not high to do this. Many doctors that are on the “speakers bureau” for drug companies fall far short of being real experts on PAH.
So when you see a physician or hospital that is a self-described “expert” in PAH, it would be very reasonable to inquire what that means. Here are some useful questions to ask.
- What type of formal training do they have?
- Any specialized training beyond fellowship?
- How long have they been treating PAH?
- How many patients with PAH do they care for?
- Do they have experience in all medications including intravenous and subcutaneous infused therapies?
- Do they participate in PAH research studies?
- How many research coordinators do they have?
- Have they published any peer-reviewed articles on PAH in the past 2 years?
- Is their program recognized by the PHA as a center of excellence?
- What infrastructure exists to help deliver the care for PAH patients?