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Alexis playing piano

November is National Caregivers Month, and the ONC salutes the over 90 million family caregivers in the United States for their often uncelebrated hard-work and tireless dedication to caring for loved-ones. Today, we celebrate one of those caregivers, Catherine Rose.

Dr. Catherine Rose has been a caregiver for the past 7 ½ years to her daughter Alexis, who was born prematurely with multiple complex conditions and requires care from over 40 professionals including pediatricians, a variety of specialists, and nutritionists. As a patient and reviewer in the ONC’s Blue Button Co-Design Challenge this past summer, she got the chance to share her unique perspective as a patient caregiver to inform and improve Blue Button-enabled health apps. Here, Catherine shares Alexis’s story with us.

ONC: Please tell us a bit about Alexis’s condition and the medical issues in her early years.

Catherine Rose: Alexis, whose twin passed away at 29 weeks, was born at 37 weeks weighing 4 pounds and not expected to live past a month. While in the neonatal intensive care unit (NICU), she did live past the first month, and the second, and today at seven years old she continues to beat the odds against intrauterine growth retardation diagnosis (IGUR). Still, her will to live and ours to support her hasn’t been easy. She was diagnosed with sleep apnea, has kidney problems, brain anomalies, and she still aspirates liquids – meaning they go into her lungs instead of her stomach. Additionally, she has had seven major surgeries – although none in the past three years.

ONC: Could you share what it takes for you to coordinate care for Alexis, who requires the care of 20 different specialists? What are your biggest challenges?

Catherine Rose: If a doctor doesn’t email, they will not be a part of our care team. When it comes to keeping my kid alive, I’m not concerned about patient confidentiality – I want the information emailed to me when I need it. I say that because I have kept an email folder since Alexis was 5 months old. That folder now has over 6600 emails in it that I use to stay organized and to be more accurate in sharing information with her large care team. This helps keep her care coordinated. For example, Alexis needs to eat by mouth and gain weight – that’s our goal. It’s complicated because making adjustments to her food intake involves us, the specialists at Children’s Hospital, her nutritionist, the pediatrician and the support team at her school. These people don’t interact with each other except through me, so I have to stay on top of things. Email and my own health mapping online helps me to stay organized in my interaction with Alexis’ care team.

ONC: Do all of Alexis’ providers and specialists have EHRs? Are you able to access information from them electronically via portals or sent directly to you?

Catherine Rose: Boston Children’s Hospital (BCH) is probably on the forefront of EHR adoption. The information I can get …read more

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