2nd Summit on Transparency and Public Reporting

2nd Summit on Transparency and Public Reporting


The Pediatric Congenital Heart Association will host its second in a series of Summits to develop lasting policy solutions that will improve patient-family access to information and improve overall quality of care.

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 shared decision-making and improved outcomes in both patient health and family experience.

As a first step toward achieving this, PCHA convened a Summit in August 2015, at the Ann and Lurie Children’s Hospital in Chicago. A multi-disciplinary group of national experts on congenital heart disease data and reporting worked collaboratively to achieve consensus on the important issues of public reporting.

Once again, the growing number of stakeholders representing surgeons, practitioners, professional societies, payers, federal agencies and policy makers, led by parents and patients, will meet at the 2nd Summit on Transparency and Public Reporting, February 16 and 17, 2016 at Johns Hopkins All Children’s Heart Institute, St. Petersburg, FL.  The conversation, building from the first meeting, will focus on mechanisms to achieve increased participation in reporting to national databases and increased public reporting.

Ongoing media coverage of hospitals and families impacted by a lack of transparency from thought leaders like CNN, Healthline and, most recently, the Philadelphia Inquirer, provide an inspirational backdrop for the meeting.


PCHA would also like to acknowledge Dr. Bradley S. Marino, chair of the Pediatric Congenital Heart Association Medical Advisory Board, Dr. Nicolas Madsen, vice-chair of the PCHA MAB, and Dr. Jeff Jacobs, PCHA MAB member, for their incredible efforts in the coordination of this event.

Together, we will improve access to information and improve outcomes.  Together, we will Conquer CHD!

#CHDAware – CHD Awareness Week 2016

There are a few key ways to help us raise awareness:


Be a part of our Crowdfunding Campaign!

CHD Aware: Raising awareness to empower patients and families with CHD.

It couldn’t be easier simply text CHDaware to 71777 to donate or become a fundraiser yourself.

Help us reach our goal of $10,000 to support our Patient Empowerment Program

  • $25 allows us to reach 1000 people through social media
  • $50 supports 10 newly diagnosed families through our guided questions program
  • $500 sponsors one hospital site visit

Become a fundraiser yourself – simply ask 10 friends to give $10! All the tools you need are right there on your phone! Any fundraiser who raises over $100 dollars will receive a free PCHA Conquering CHD t-shirt.

You can even share this graphic to engage your friends and family:

Text to donate

Be a part of our Social Media Campaign!

#CHDaware: Raising awareness of CHD

February 7-24 is Congenital Heart Disease Awareness Week. What are you going to do to spread the word about the most common birth defect?

Several of the Pediatric Congenital Heart Association programs help educate parents, physicians, and lawmakers in turn spreading awareness all year long.

However, during the week of February 7-14, the entire community comes together to help others understand how common birth defects are,  the need for research, and access to quality care.

We have created a series of social media graphics that you can use to help us reach those outside of our community. Share them, tweet them, pin them, make them your profile pic.

Make it personal – add details about your story, your experience.  Include a message about the importance of research funding or encourage others to advocate.

We can do the work for you – guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

Facebook twitter-button linkedin iglogocolor


Where are the graphics?

During CHD Awareness Week, we will post a new graphic each day for you to share, tweet, pin…

But if you can’t wait that long, here they are:

Awareness Week 1in100Costly Most Common Birth Defect Stay in care Together, we will Conquer CHD Donate


Costly Need intervention

Email your Legislators about CHD!

LC 2016
As you read this, more than 150 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2016 Congenital Heart Legislative Conference.  They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD).

You can participate virtually by advocating from home!

Send an email, today to your lawmakers.  The more advocates who send emails, the stronger our voice will resonate in Washington D.C.
Take action in three easy steps:

  1. Find your legislator’s contact information.
    1. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.gov or www.house.gov
    2. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the paragraph below – adding your own personal story.
  3. Send it!

You did it!  If you successfully connect with your legislator or their office, let us know you made contact by completing our online form available here.

This is a very exciting day and a great opportunity to work together to Conquer CHD!

Sample Letter:

Subject: Support Congenital Heart Disease Research

Dear Senator/Congressman [Fill in name here]

I’m writing to urge you to support federal research, surveillance and awareness for congenital heart disease (CHD).

Every 15 minutes, a baby is born with congenital heart disease, the most common birth defect and leading cause of birth defect related infant death.  Even for those who receive successful intervention, it is not a cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.
Continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understand congenital heart disease at every age, improve outcomes and reduce costs.

We urge Congress to:

  • Cosponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)
  • Provide $10 million to the CDC and $34.6 billion to the NIH in fiscal year 2017
  • Join the Congenital Heart Congressional Caucus (for House Members)

To cosponsor this important legislation (S.2248/H.R.3952) please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office, Kristin Seum (Kristin.seum@mail.house.gov) with Congressman Bilirakis’ office or Dao Nguyen (dao.nguyen@mail.house.gov) with Congressman Schiff’s office.  If you would like any additional information please contact Amy Basken at abasken@conqueringchd.org.

Thank you-
[Your Name – your city/state]