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  1. Transparency Blog Series Recap

    For the month of July, PCHA recognized the importance of transparency. Our goal is to inform, educate, and empower patients and families to actively participate in data-driven, shared-decision making. The fight to conquer CHD is strengthened by the involvement of all of those who share our mission. It takes a community coming together around education, research and awareness…

  2. The Importance of Information to Support Shared-Decision Making

    The Pediatric Congenital Heart Association firmly believes that patient-engaged care leads to improved patient experience and outcomes. In this tragic story, one family believes that they did not have the information needed to properly understand the expectations for their child. We encourage patients and providers to work closely together to find a balance between hope…

  3. A Lesson in Learning To Be a Better Patient

    As CHD is a lifelong condition, an important aspect of transparency is knowledge of a complete medical history. PCHA welcomes Meghan Chell, a CHD survivor, who speaks about her recent challenges in finding the right care as an adult CHD patient.  If you don’t learn your medical history, you’re doomed to repeat it. Three years ago,…

  4. A Life Raft: A Parent’s Experience using the Guided Questions Tool

    The Guided Questions tool was designed to help parents promote discussion with their cardiac care team. At the Pediatric Congenital Heart Association (PCHA), we believe that information is important when making decisions about the care of your child. The tool is broken into three key aspects of care: quality data, patient experience and looking ahead. Esther…

  5. Passion and Progress: A Provider’s Perspective

    In July, PCHA is highlighting the need for transparency. Our goal is to inform, educate, and empower patients and families to actively participate in data-driven shared-decision making. Julie Slicker, a member of the PCHA Medical Advisory Board and lead on the Guided Questions Tool, speaks about the importance of transparency from a provider’s perspective.  “We didn’t know…

  6. Press Alert: Announcing New Partnership with Rapid SOS

    ·         RapidSOS and the Pediatric Congenital Heart Association partner to provide enhanced access to emergency services 240 million[1] 9-1-1 calls are made every year in the U.S.; over 70%[2] are from mobile phones, which fail to provide exact location to emergency dispatchers 40,000 infants are born in the U.S. each year…

  7. Make your call for help do more! Subscribe to Rapid SOS – Haven

    PCHA is excited to partner with Rapid SOS and their Haven mobile app, to help keep you and your loved ones safe. With the press of a button you can contact emergency services, share key information about location and medical history, and alert your emergency contacts. Perfect for families of children or adults with congenital heart disease. As…