Pediatric research: The power of one...and a half

It never fails...

One person deciding to take action becomes a driver for a whole community.

Last Friday, PHA board member Steve Van Wormer e-mailed us a public service announcement he had made to support the pediatric research and mentoring that has become an important target for PHA.   We were all very pleased by the the great quality of what he put together...and especially the voice work of Steve's 9 year old son, Lucas.

When we receive a new tool for the community, we always put together a marketing plan to make sure that it is used for the most benefit. 

This time was a little different...

Steve and Lucas' work so obviously filled a need that the small number of people who received it began to move immediately.  It's already being embedded on Facebook pages and pushed out in other ways. 

At its conclusion, it links to the Robyn Barst Pediatric Research and Mentoring Fund which is close to its target for beginning operations.  That Fund page includes information and videos from doctors and parents talking about the importance of pediatric research and creating a body of physicians mentored to capably treat children with PH.

Little more than twenty years ago, PH began to develop as a research and clinical focus.  Now, we are beginning to see - and help drive - that growth among physicians working with children.  While broad PH research remains of critical importance and of benefit to all, pediatric PH research and developing knowledge and understanding of appropriate treatment of children with PH is coming into its time.

What people like Steve and his son, Lucas, are doing in support of the doctors who are building the pediatric field is making that time come faster.  It's a great partnership.

We encourage you to help further circulate the video at the top of this blog.  You can find it here.  Please click on "Like" and you'll be asked if you want it placed on your facebook page...please do. 

Right now, we're working on making e-mails available with an image of the video in them.  I'll update this blog when those are ready

A new step forward in pediatric medical education...and a growing concern

Last week, I wrote that Caitlin Flewellen on our Medical Services staff and I would be going to San Francisco for the Fourth International Neonatal and Childhood Pulmonary Vascular Disease Conference.

I had attended last year's meeting in Banff and was impressed at how much of the programming focused on pediatric PAH.  It struck me then that  the pediatric field was progressing rapidly, much as the broader PAH field was developing two decades ago.

As we thought about how we could help with this acceleration, the idea of filming those sessions where speakers were agreeable and posting them with educational credit on PHA Online University emerged.

Thanks to the active support of Dr. Jeffrey Fineman, Conference organizer, Matt Trojnar and PHA SLC members, PAH pediatricians Dunbar Ivy and Erka Berman Rosenzweig, we were able to work out an agreement and get word out to the 31 speakers.  We were also able to work out an arrangement with the University of California at San Francisco to make it financially feasible to re-purpose the talks for educational credit.

We contracted with Fleetwood the same company that did such a great job filming sessions at the PHA International Conference last June.  I love their presentation tool which syncs slides and speaker video.  Here's a sample from Conference.

By the time we had made these arrangements, we were within a week or so of the Conference start.  Our e-mails to the speakers generated 11 positive responses.  So, we went to the Conference with some nervousness.

Caitlin was invited to sit at the registration desk and connected with speakers as they arrived.  By the time she was done, speakers agreed to be filmed in 28 of the 31 sessions!

We believe this success, besides making a great deal of pediatric medical education available online and publicizing the value of this Conference, will be groundbreaking as a model for the filming of other valuable events.

Because we have given the physicians review rights on their filmings and because we have to go through CME review, the presentations won't appear immediately but we're hoping to have them up within four months.

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As a cautionary aside, one disturbing factor in this march toward the development of pediatric medical education is a new FDA rule which requires that pharmaceutical industry support can only be provided for pediatric medical education if the supporting company has an approved indication for the pediatric use of their product.  In the case of PH (and we are not alone, given the FDA's caution in allowing pediatric trials), all approved drugs are being used off-label for children. 

So a question must be asked of the FDA... 

If the pharmaceutical industry is being regulated out of providing support and we already know that neither government nor academia are willing or able to provide such support, are physicians to be condemned to restricted knowledge in the name of purity?

As this Conference's funding is being threatened, PHA has offered to do our best to help but the problem is a rapidly growing one and our own resources are limited.

We will do our best to help and fulfill our mission in the face of a regulatory system that is more and more ignoring the (unanticipated and damaging) consequences of its actions.

We are simple people, trying to do a simple thing...and I'm convinced it is the right thing.