Each year 40,000 families in the United States will have a child born with a Congenital Heart Defect (CHD). One of the most important decisions they will need to make is which hospital is right for their child to get the care that he or she needs.
On Tuesday, May 16, 2017, a panel of three experts sat down to discuss the new Patient Portal being developed that will support transparency and patient empowerment at Phoenix Children’s Hospital. The panel included Amy Basken, the Director of Programs and co-founder of the Pediatric Congenital Heart Association; David Kasnic, the Executive Director and co-founder of the Pediatric Congenital Heart Association and parent to a child with CHD; and Dr. Tara Karamlou, MD, a surgeon at Phoenix Children’s Hospital who specializes in heart transplants. Together, they answered questions from the community on Facebook Live.
To begin, they spoke about the importance of transparency. Kasnic made a wonderful point when he stated that there are websites comparing where a family should go out to eat or where to send a child to school, but there is not a website designed specifically for helping a family choose which hospital to bring their kids to. This, he said, stems from consumers not asking for transparency. Although she agreed with what Kasnic said, Karamlou also mentioned that not everybody feels comfortable being transparent. Doctors want to make sure that if the information is out there that it is being presented in a fair way.
This is where the Patient Portal comes in. Karamlou said that the portal will be a place for families to get accurate information that is written in a way that’s clear and easy to understand. Basken pointed out that often times numbers are just thrown at families and that it is extremely difficult to understand. She says that the Patient Portal will take these real numbers and pair it with extra context and teaching tools (e.g., graphs and charts) so that the information makes sense.
One question that the Facebook Live audience asked was if there is a “right” or “best” center for everyone. Kasnic said that no, there is not one center that is right for everybody. While the data presented on the Patient Portal will give families a sense of how various hospitals operate, Kasnic said that parents will ultimately make a gut decision based on doctors and relationships. Karamlou also mentioned that not every hospital will do everything equally as well. Comparing hospitals in the portal will open the door for families to go to different centers for different things.
The portal will hopefully be established and operational in the fall. Within the next two to three years, it should be fully functional for families to use.
Watch the video above to see the full question and answer session from Facebook Live. If you have any questions, you can email Heart Effect at firstname.lastname@example.org or visit the Pediatric Congenital Heart Association’s website.