Give CHD a Voice – #GivingTuesday 2015

 

Join millions of generous donors on what has become a national day of giving.

“Give a gift that matters.” By donating to PCHA today, you will help Give CHD a Voice.

Your gift will:​

– Build our Advocacy Network
– Train CHD advocates
– Educate our lawmakers
– Secure millions of dollars in CHD research funding

Give CHD A Voice, donate, today!

 

Give CHD A Voice 2

Shoes Worthy of a Heart Hero

The Pediatric Congenital Heart Association celebrates creative efforts to raise awareness and educate the public about congenital heart disease.  This post was written by Jacob’s mom to recognize his incredible achievement!  

In September 2014, Jacob Burris was unexpectedly diagnosed with a CHD known as a coarctation of the aorta.  His disconnected aorta was repaired surgically last year at the Oregon Health & Science University, OHSU Doernbecher Children’s Hospital in Portland, Oregon. The medical care he received was amazing.  Since then Jacob has become a heart health advocate for checking blood pressure since detecting his high blood pressure is how his CHD was discovered at the age of 12.  At home in Eugene, Oregon, Jacob passes out 1” pins that remind people in our community to ‘Check Your BP.’

Nike_Doernbecher_Jacob_Burris_Portrait_rectangle_1600

Thanks to an incredible partnership between Doernbecher Children’s Hospital and Nike, Jacob is one of six patients out of hundreds of thousands that were given the opportunity to design a one-of-a-kind pair of shoes & apparel that will benefit the hospital that saves children’s lives on a daily basis. Jacob took this opportunity to advocate for heart health and also, to share his CHD story with the hope that it will inspire others who are affected by CHDs to find strength and persevere through the rough times. Jacob designed a classic- the Air Max 95 Premium. His shoe design has a lot of ‘double meanings’ that he hopes will strike a chord with the CHD community.

Nike_DBFS_2015_JACOB_pair_hero_white_rectangle_1600

The shoe features a custom made circuit board pattern with his name worked secretly into the circuitry. The toe of the shoe is blue and transitions to red by the time you get to the heel. For Jacob, this represents his blood flowing strong through his once obstructed circuits.  The colorway doubles as a nod to his favorite superhero and inspiration, Spider-Man. On the back upper you will find Jacob’s two thumb prints overlapped into the shape of a heart and the sock liner has a heart rate monitor that says ‘I walk to my own beat.’ Jacob plays the drums and he loves that the drum beats, and so does his heart. The tongue has a “JB” logo, representing his initials. But, if you look closely you will see that the ‘B’ isn’t quite connected all the way – just as his aorta was disconnected, it actually forms a 13 which is the age Jacob was when he got to create this shoe.

jacobs heart shoe

Jacob’s shoe also features the signature of Stan Lee – Spider-Man’s creator –  in the air pocket on the sole!  When Make-A-Wish granted Jacob’s dream to meet the legendary comic creator earlier this year, Jacob took the opportunity to ask ‘The Man’ if he would lend his signature to his custom shoe. Jacob is likely the biggest Spiderman fan you will ever meet and getting his ultimate hero, Stan ‘The Man’ Lee to sign off on the shoe was absolutely excelsior! Jacob also had the opportunity to work with his team of Nike designers to develop a very stylish hat and hoodie, which go great with his Air max 95 Premiums!

jacob's apperal & shoes

Jacob hopes people in the CHD/heart health community will want to help him spread the word by wearing some of his custom designs. You won’t have to wait long; the collection will be available November 21st in select Nike stores and online at Nikestore.com with 100% of the proceeds going directly to OHSU Doernbecher Children’s Hospital.To date, this partnership has raised over $11 million for OHSU. Our family is very thankful to be part of a community with CHD heart heroes and warriors that fight for a better future for kids and adults living with CHD.

For more information about Jacob’s incredible story visit his website at www.jacobsheartstory.com and ‘like’ our page – Jacobs Heart Story – on Facebook to show your support and stay updated on Jacob’s mission to spread the word about CHDs and heart health!

It’s In Your Hands

Being a heart parent isn’t easy. That’s no news flash. You’ve run the gamut of emotions from scared, to sad, to angry, then rinse and repeat. Oh yeah, and life doesn’t stop and wait for you to get it together either. There are days where you feel like maybe you’re starting to get it together, then comes a week where you’re feeling like the worst parent in the world. Through it all you try your best to hold on, and in this whirlwind of craziness that is our life we find ourselves craving encouragement. Well, Mom and Dad: I’m here to encourage you today.

I want you to take a deep breath, let it out, and then think for a moment about your hands. Think of all the things you use your hands to do. Next look back on this past week or two and remember a time where you used your hands to do some good. Maybe you used them to calm your heart warrior after a fall and a scrape. Maybe you placed a hand on another parent’s shoulder to let them know you’re there with them in their struggle. Maybe you’re making your famous spaghetti and meatballs that your kids love. How do you feel when you think of that moment? Let yourself be filled with that feeling.

Parents, there’s something special in our hands: something that brings joy and peace and safety to others. And that – in turn – makes us better. Let’s face it, we’ve seen a lot of profane things in this world: the tubes, the monitors, the incisions, the open chest and beating heart. We experience real fears and anxieties, real trials and struggles. In the midst of these things, though, is the work of our hands…and that work is sacred.

So when you’re pumping in that last tube feed and you’re tired, or you hammering out a supportive text message to another parent, or you’re shaking the hand of a lawmaker as you advocate for heart kids, or you’re snapping a fussy toddler with a beautiful scar into a car seat, I want you to realize that it’s sacred work you’re doing, in the midst of all the profane things we face. And when you get down and you feel like it’s all for nothing, I want you to close your eyes, take a deep breath, and think about what your hands have done this week. Create a special place in your mind where that feeling resides and make sure you always go back to it. Because you’ll realize that after close inspection, your hands are often busy doing very sacred work. Stay strong, parents.

HeartHand

 

 

 

 

 

 

 

 

 

 


BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

ACTION ALERT: Tell Congress to Support CHD

AA - Futures Act
Action Needed – 

Email your legislators: Co-Sponsor the Congenital Heart Futures Reauthorization Act

 

Email your lawmakers and ask them to co-sponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952.)

  1. Visit your lawmaker’s website where you will find a “contact us” form.  You can find their website at www.house.gov or www.senate.gov.  If you are a veteran advocate, you may have direct contact information from previous activities.
  2. Using the suggested talking points and your own personal information, edit the letter below and paste it into the online form.
  3. Let us know you took action: Tell us on Facebook, send us an email or complete the I did it! form on our website.

Suggested Talking Points:

  • The Congenital Heart Futures Reauthorization Act directs the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to continue vital congenital heart research and data collection activities..
  • The law was introduced November 5th by Senator Dick Durbin (D-IL), Senator Bob Casey (D-PA), Representative Gus Bilirakis (R-FL), Representative Adam Schiff (D-CA)
  • This legislation builds on existing programs by:
    • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
    • Expanding research into CHD. The bill directs the CDC to plan, develop and implement a cohort study that would improve understanding of CHD across the lifespan. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
    • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHD across the lifespan. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

Email template:

Dear Senator/Congressman [Fill in name here],

I am writing to ask you to co-sponsor S.2248/H.R.3952, Congenital Heart Futures Reauthorization Act.This important legislation builds on existing programming which will improve understanding of the most common birth defect across the lifespan.

1 in 100 babies are born with congenital heart disease (CHD), the leading cause of birth defect related infant death.  There is no cure for CHD. Those children who do survive face life-long, costly specialized care.

[Using 4-6 sentences, tell your story here and why research is important to you.]

There are more than 2 million children and adults in the United States living with congenital heart disease. CHD remains a serious public health burden and must be made a priority.

To Sponsor S.2248/H.R.3952, please contact ed_hynes@durbin.senate.gov in Sen. Durbin’s office or kristin.seum@mail.house.gov in Rep. Bilirakis’ office.

If you would like any additional information, please contact Scott Leezer at advocacy@conqueringchd.org.  

Thank you,

[Your Name, Your city/state]

To learn more about the PCHA advocacy program, visit our website.

Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)

2014-01-30 15.12.14Congenital Heart Disease Legislation

In November, 2015, the Congenital Heart Futures Act Reauthorization Bill was introduced in the Senate (S.2248) and House (H.R.3952) by legislative champions:

  • Senator Dick Durbin (D-IL)
  • Senator Bob Casey (D-PA)
  • Representative Gus Bilirakis (R-FL)
  • Representative Adam Schiff (D-CA)

 

 

Current Cosponsors (Updated 3/8/16)

Senate Cosponsors

Sessions, Jefferson “Jeff” [R-AL] – (joined Nov 16, 2015)
Bennet, Michael [D-CO] – (joined Nov 18, 2015)
Cochran, Thad [R-MS] – (joined Jan 19, 2016)
Donnelly, Joe [D-IN] – (joined Feb 8, 2016)
Kirk, Mark [R-IL] – (joined Feb 11, 2016)
Baldwin, Tammy [D-WI] – (joined Mar 7, 2016)

House Cosponsors

Norton, Eleanor [D-DC0] – (joined Nov 5, 2015)
McGovern, James “Jim” [D-MA2] – (joined Nov 18, 2015)
Swalwell, Eric [D-CA15] – (joined Dec 2, 2015)
Blackburn, Marsha [R-TN7] – (joined Dec 11, 2015)
Bucshon, Larry [R-IN8] – (joined Dec 11, 2015)
Griffith, Morgan [R-VA9] – (joined Dec 17, 2015)
Loebsack, David [D-IA2] – (joined Dec 18, 2015)
Nolan, Richard [D-MN8] – (joined Dec 18, 2015)
Lance, Leonard [R-NJ7] – (joined Jan 8, 2016)
Walberg, Tim [R-MI7] – (joined Jan 8, 2016)
Guthrie, Brett [R-KY2] – (joined Feb 1, 2016)
Collins, Chris [R-NY27] – (joined Feb 2, 2016)
McMorris Rodgers, Cathy [R-WA5] – (joined Feb 2, 2016)
Bost, Mike [R-IL12] – (joined Feb 3, 2016)
Lewis, John [D-GA5] – (joined Feb 3, 2016)
Webster, Daniel [R-FL10] – (joined Feb 4, 2016)
Abraham, Ralph [R-LA5] – (joined Feb 9, 2016)
Grothman, Glenn [R-WI6] – (joined Feb 10, 2016)
Pocan, Mark [D-WI2] – (joined Feb 10, 2016)
Ellmers, Renee [R-NC2] – (joined Feb 12, 2016)
Ellison, Keith [D-MN5] – (joined Feb 24, 2016)
Hahn, Janice [D-CA44] – (joined Feb 24, 2016)
Brooks, Susan [R-IN5] – (joined Mar 2, 2016)
Fitzpatrick, Michael [R-PA8] – (joined Mar 21, 2016)
Sessions, Pete [R-TX32] – (joined Apr 13, 2016)
Connolly, Gerald [D-VA11] – (joined Jul 5, 2016)

Are your legislators on the list?

If not email them, today!!!


 

Here’s more information about the CHFRA:

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to plan, develop and implement a cohort study that would improve understanding of CHD across the lifespan. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHD across the lifespan. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

Here is the complete text as introduced in the House on 11/5/15.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Also, consider bringing your voice to Washington D.C. as we advocate for this legislation in February!

Together, we will CONQUER CHD!

Congenital Heart Legislative Conference 2016

LC 2016

Registration is now closed

but be sure to stay tuned for opportunities

to get involved from home!

 

The Adult Congenital Heart Association,

Children’s Heart Foundation,

and Pediatric Congenital Heart Association

invite you to attend

Congenital Heart Legislative Conference 2016

February 1-2, 2016

Liaison Capitol Hill Hotel, Washington D.C.

 

Your voice matters as we unite to educate our members of Congress about congenital heart disease.

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

 

Important Deadlines:

  • November 30 – Early Bird Registration Ends
  • January 8 – Last day to register and receive hotel discount rates

 

Conference Agenda Overview:

Monday, February 1st
Congenital Heart Legislative Conference
9:00am – 10:30am Registration
10:30am – 11:30am – Advocate Training
11:30am -1:00pm – Lunch, Meet and Greet
1:00pm – 5:00pm – Advocate Training
6:00pm – 9:00pm – Reception

Tuesday, February 2th
Conference Conclusion and Hill Visits
6:45am – Buffet Breakfast
7:30am – 8:30am – Advocate Training
9:00am – 4:30pm – Hill Visits
5:00pm –7:00pm – Closing Reception

 

Travel and Lodging:

Note, all attendees will be responsible for travel and lodging.*

We encourage you to register and book your hotel and travel reservations early.

For those who wish to stay on-site at the Liaison Capitol Hill:

  • Call toll free (877) 499-5277.
  • Or you can register online.
  • Please be sure to reference the Congenital Heart Conference group when making reservations or provide the following Reservation ID: PEDCON

Deadline to secure your rate of $189/night is Friday, January 8, 2016; no exceptions.

*A limited number of scholarships will be available. For more information and how to apply, contact Danielle at dstephens@achaheart.org or Amy at abasken@conqueringchd.org.

Space will fill up fast, be sure to register, today!

Register

Where You Least Expect It

So I learned a lesson from a monkey…and not even a real one at that…

My son Nolan has been into a variety of toys and stuffed animals, but not really anything he’s latched onto.  Until he found the monkey.  You see, the monkey is a not-flashy stuffed animal that was actually part of a diaper cake that was made for us when we had a baby shower for our first son, who is now 5.  Somehow this monkey has traveled with us all these years, looking for the right child to obsess over him.  Enter Nolan.

NolanMonkey1

Needless to say, Monkey is Nolan’s homeboy.  Well one day things got interesting, because it occurred to us that we hadn’t seen Monkey in awhile.  Was he in the van?  No.  Was he under Nolan’s bed?  Nope.  In the wash?  Nah.  It was a great mystery.  The good news was that Nolan actually hadn’t been asking for Monkey, so we had time to figure it out.  What I was dreading, however, was the thought that Monkey was lost somewhere, like the grocery store or the mall.  Then, out of the blue one day, Nolan started asking for Monkey…and he walked around everywhere with my wife looking for him.  Oh boy.  So I ran upstairs and began looking myself.  I looked in the closets and in all the rooms, behind dressers, etc.  No Monkey.  I was exasperated.  Where the heck was the Monkey?

NolanMonkey2

Then I looked at the place I would’ve least expected it.  See, the underside of my oldest son’s bed is actually two big drawers that pull out.  Of course, I already looked in those drawers for Monkey with no luck.  Something told me to pull the drawers out and see if, by some CRAZY chance, the Monkey was back there.  I got down on the ground, looked, and there he was!  It was a triumphant moment as I bounded down the stairs and victoriously presented Monkey to my happy little boy.  YESSS.

So what on earth does this have to do with anything?  You see, as a Heart Parent sometimes things get difficult, sometimes they’re frustrating, and sometimes they’re just plain overwhelming.  There’s not enough time, not enough sleep, and not enough good news to go around and make things better.  We know what it’s like aimlessly roaming the hospital halls just waiting, or that nervous feeling in the pit of your stomach when the calendar inches towards the next cardiology appointment.  In those crazy moments, there exist other moments of joy, victory, and confidence.  We always want those things to exist in places where it’s obvious, almost like it fell out of the sky into your lap.  I wish I could say that’s always the case.  You have to find those moments…and often they’re not where you expect them to be.

It can be in the car, stuck in traffic, when the song comes on…you know, the one you haven’t heard in foreeeeever, that makes you smile.  Or it could be that other parent, you know, the one who has it all together while you’re a mess; and they tell you you’re doing an awesome job.  Or maybe it’s on that day you have to leave for work at 5am and you look up at the stars still in the sky and the beauty of it takes your breath away; and you realize that while your world isn’t always perfect, it can still be stunning.  Friends, don’t let those moments pass you by: they’re like little treasures that you stumble across from time to time and if you learn to appreciate them, you won’t be able to help but to smile and get that feeling like “Hey, I’ve got this!”  So don’t forget to look around from time to time, find moments where you can help others, find your “monkey,” and remember that it’s ok to just smile and laugh sometimes!

BlogHeadshot

 Chris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

CDC Awards Next Round of CHD Surveillance Grants

At the Pediatric Congenital Heart Association, advocating for increased funding for data collection and public health research has always been a top priority.  Each year, our advocates call on Congress to give money to the CDC as part of the Congenital Heart Futures Act.  Shortly after this new law passed in 2010, the CDC awarded 3 four-year grants to work on CHD data collection in teens and adults. Thanks to the great efforts of our advocates, we are excited to see this work being expanded upon. This next round increases the number of grants from 3 to 5, and expands the work to look at children, too. Thank you to all of you have shared your voice to advocate for CHD across the lifespan!  Together – we are Conquering CHD!

Read more about it in this Capitol Hill Announcement:

 

Monday, September 21, 2015

CDC Announces New Cooperative Agreement Awards on Congenital Heart Defects

CDC’s National Center on Birth Defects and Developmental Disabilities is pleased to announce the five sites that have been funded to expand upon population-based tracking of adolescents and adults with congenital heart defects (CHDs). Emory University, Duke University, University of Colorado – Denver, New York State Department of Health, and the University of Utah will be awarded a total of $2.3 million for the first year of this four year project.

Emory University and New York State Department of Health were also funded from 2012-2015 and will build on their existing infrastructure for population-based tracking of CHDs to:

  • conduct longitudinal follow up of adolescents and adults identified with CHDs
  • identify factors associated with optimal healthcare and improved outcomes
  • evaluate factors that impede appropriate transition from pediatric to adult care
  • expand tracking activities to include the lifespan
  • develop pilot projects to translate public health best practices into action

Duke University, University of Colorado – Denver, and the University of Utah will develop and implement innovative approaches for conducting population-based tracking of CHDs focused on adolescents and adults, and potentially across the lifespan, by linking existing data sources. Tracking data will be used for descriptive epidemiology, to identify comorbidities, and examine healthcare utilization and referral to timely and appropriate services for adolescents and adults with CHDs.

Congenital Heart Defects

CHDs are one of the most prevalent birth defects in the United States affecting about one percent of all births and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs.  However, most current efforts to conduct population-based tracking of CHDs have focused on monitoring newborns, and little data exist on the prevalence and descriptive epidemiology of CHDs beyond early childhood in the United States.  Current estimates suggest there are over 2 million people living with a CHD in the United States.  Despite the public health burden, the lack of population-based tracking for CHDs among individuals of all ages in the United States means there are no reliable data on the actual prevalence, and the type and number of health services required to address the health needs of these individuals, costs of such health services, and longer term outcomes including comorbidities and survival of individuals living with CHDs. These awards will provide data to address such concerns, including transition from adolescent to adult care.

For more information about CHD, see CDC’s website: http://www.cdc.gov/heartdefects/

Save the Date: 2016 Legislative Conference

Save the Date

Mark your calendar!

The Adult Congenital Heart Association,
Children’s Heart Foundation,
and The Pediatric Congenital Heart Association
invite you to attend

Congenital Heart Legislative Conference 2016

February 1-2, 2016
Liaison Capitol Hill, Washington D.C.

Your voice matters as we unite to educate our members of Congress about congenital heart disease.

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

More information and online registration will be available this fall.

Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes

The Pediatric Congenital Heart Association was thrilled to have the opportunity to host the recent Summit on Transparency and Public Reporting.  Although, it is hard to capture the importance of this meeting on paper, below is a release summarizing the event. We are certain that you will continue to see the impact of this in weeks and months to come.

Summit on Transparency and Public Reporting

Hearing that there is something wrong with your baby’s heart is devastating. In the face of this news, parents simply want what is best for their child.  This was the case for Amy and Brian Basken, the parents of Nicholas.  Nicholas was born with a heart defect that required surgery when he was just 3 days old. “I felt out of control,” recalls Basken. “Looking back, I was asking questions that didn’t matter, when I should have been asking how well they were able to take care of my child.”

Basken is now co-founder and Director of Programs at the Pediatric Congenital Heart Association (PCHA).  Their mission is to “Conquer Congenital Heart Disease.”  PCHA believes that helping patient and family empowerment is essential to achieving this mission. “I want to help others get the vital information they need so they don’t have to feel the way I did.”

PCHA supports informed decision-making that will allow patients and families to obtain the best medical care possible.   Health information that is patient-centered, accurate, accessible, and effectively communicated is a necessary component of patient and family empowerment, resulting in informed decision-making and improved outcomes in both patient health and family experience.

As the first step toward finding a lasting policy solution, the Pediatric Congenital Heart Association was honored to host the Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes at the Ann and Robert H. Lurie Children’s Hospital, Chicago, Il on August 19-20, 2015.  National experts on congenital heart disease data and reporting met to discuss the history of public reporting, data collection methodology and reporting strategies. This multi-disciplinary group represented surgeons, practitioners, professional societies, payers, federal agencies, policy makers, parents and patients working collaboratively to achieve consensus on the important issue of public reporting.

Dr. Bradley S. Marino, chair of the Pediatric Congenital Heart Association Medical Advisory Board, and co-coordinator of the event noted “this is the first-of-its-kind meeting in the field where parents are driving the policy conversation in collaboration with the experts – resulting in groundbreaking solutions that will shape the future of pediatric cardiovascular disease care.”

The work of the Summit helped to define areas of consensus and opportunities, which will be outlined in a future publication.  Basken notes: “PCHA is already working on next steps – talking to policy makers, considering our options. We have momentum to make lasting change, to improve parent access to information and improve overall quality of care.”