{"id":5402,"date":"2013-11-19T09:00:37","date_gmt":"2013-11-19T14:00:37","guid":{"rendered":"http:\/\/www.healthit.gov\/buzz-blog\/?p=5402"},"modified":"2026-01-05T21:45:32","modified_gmt":"2026-01-05T21:45:32","slug":"health-empower-caregivers-alexiss-story","status":"publish","type":"post","link":"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/","title":{"rendered":"How Health IT Can Empower Caregivers: Alexis\u2019s Story"},"content":{"rendered":"\n

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.  <\/i>
<\/p>\n\n\n\n

Dr. Catherine Rose has been a caregiver for the past 7 \u00bd 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\u2019s 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\u2019s story with us.<\/p>\n\n\n\n

ONC: Please tell us a bit about Alexis\u2019s condition and the medical issues in her early years. <\/b><\/h5>\n\n\n\n

Catherine Rose:<\/b> 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\u2019t been easy. She was diagnosed with sleep apnea, has kidney problems, brain anomalies, and she still aspirates liquids \u2013 meaning they go into her lungs instead of her stomach. Additionally, she has had seven major surgeries \u2013 although none in the past three years.<\/p>\n\n\n\n

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? <\/b><\/h5>\n\n\n\n

Catherine Rose:<\/b> If a doctor doesn\u2019t email, they will not be a part of our care team. When it comes to keeping my kid alive, I\u2019m not concerned about patient confidentiality \u2013 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 \u2013 that\u2019s our goal. It\u2019s complicated because making adjustments to her food intake involves us, the specialists at Children\u2019s Hospital, her nutritionist, the pediatrician and the support team at her school. These people don\u2019t 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\u2019 care team.<\/p>\n\n\n\n

ONC: Do all of Alexis\u2019 providers and specialists have EHRs? Are you able to access information from them electronically via portals or sent directly to you? <\/b><\/h5>\n\n\n\n

Catherine Rose:<\/b> Boston Children\u2019s Hospital (BCH) is probably on the forefront of EHR adoption. The information I can get from their portal includes: Alexis\u2019 blood work, which is very helpful; vital signs; what appointments we have, etc. This is great because we have a complex care coordinator who sometimes makes appointments on our behalf and we can contact doctors through the portal. Still, what I don\u2019t currently have access to and what I would love are physician notes. I\u2019d also like to have access to complete reports electronically rather than via snail mail ten months after we\u2019ve had a visit.  Finally, I would also love to be able to access her imaging results electronically rather than having to go in and ask for physical copies that I then have to scan and save.<\/p>\n\n\n\n

ONC: For the providers without EHR systems, does it make it harder for you to coordinate care for Alexis?<\/b><\/h5>\n\n\n\n

Catherine Rose:<\/b> Information is power, and we\u2019ve seen firsthand the shift from paper records to EHR systems, because it\u2019s happened within Alexis\u2019s lifetime. Alexis bounced between different hospitals in the beginning, and it took us a year to figure out her blood potassium levels were the issue, because all her data wasn\u2019t in the same place. It was up to me to get the different blood test reports and plot them, and send them to the kidney department. It was tedious, and if I hadn\u2019t done that, Alexis might not be here.<\/p>\n\n\n\n

My first time getting my patient-facing portal account was in 2009. Getting access to her blood work, vital signs, and messaging was a huge help.<\/p>\n\n\n\n

ONC: Tell us about your experience as a judge on t<\/b>he <\/b>Blue Button<\/b><\/a> Co-Design Challenge. <\/b><\/h5>\n\n\n\n

Catherine Rose:<\/b> I was both a patient co-designer and a judge, so I looked at all the submissions. What I saw was that some of the solutions were so focused on taking care of yourself as a patient that they didn\u2019t really anticipate that caregivers might also want to log in and take care of another person.  Some submissions were easy to navigate, others weren\u2019t. GenieMD<\/a> was very intuitive, and they were creating a community that I thought needed to be created. There are 45 people that Alexis could interact with on any given day that need real-time access to her health information. These complex processes bring along complex organizational and communication problems, but the solutions need to be really simple. A caregiver might only have five minutes between doctor\u2019s appointments to take care of important things like prescription refills, and they want to be able to do it with just the click of a button on their phone.<\/p>\n\n\n\n

\"Alexis
Alexis Piano Playing\nPhoto Credit: Topher Cox<\/figcaption><\/figure>\n\n\n\n
ONC: If you had one message for your fellow caregivers what would it be?<\/b><\/h5>\n\n\n\n

Catherine Rose: <\/b>Because so much of your time is spent with the person you\u2019re caring for, it can be very isolating. Not much of your time is focused on you.  <\/b>I\u2019d say, find someone else who is living the same life as you. It\u2019s helpful if that person is a virtual friend, because then your interaction isn\u2019t on a forced timeline. Finding a resource online is so helpful, to learn better practices and get support from other people out in the world. Finally, I will say use Health IT to help you get your act together and stay organized. Don\u2019t be burdened by the papers.  Free yourself of that so you can make time for you and the people around you.<\/p>\n\n\n\n

Dr. Catherine Rose can be reached via Twitter @drcatherinerose.<\/i><\/p>\n","protected":false},"excerpt":{"rendered":"

November is National Caregivers Month, and the ONC salutes the over 90 million family caregivers […]<\/p>\n","protected":false},"author":619,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_selected_menu":"","_show_breadcrumbs":"true","_blog_show_featured_image":false,"footnotes":""},"categories":[15],"archived-category":[],"featured":[],"topics":[409,408,443],"class_list":["post-5402","post","type-post","status-publish","format-standard","hentry","category-consumer","topics-behavioral-health","topics-care-continuum","topics-patient-access-health-records"],"acf":{"blog_authors":[{"blog_author_profiles":"198533"}],"hp_news_hide":false},"yoast_head":"\nHow Health IT Can Empower Caregivers: Alexis\u2019s Story - ONC Blog<\/title>\n<meta name=\"description\" content=\"As part of National Caregivers Month, ONC is highlighting one mother's unique perspective as a patient caregiver to inform and improve Blue Button-enabled health apps.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"How Health IT Can Empower Caregivers: Alexis\u2019s Story\" \/>\n<meta property=\"og:description\" content=\"As part of National Caregivers Month, ONC is highlighting one mother's unique perspective as a patient caregiver to inform and improve Blue Button-enabled health apps.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/\" \/>\n<meta property=\"og:site_name\" content=\"ONC Blog\" \/>\n<meta property=\"article:published_time\" content=\"2013-11-19T14:00:37+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-01-05T21:45:32+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/healthit.gov\/blog\/wp-content\/uploads\/sites\/4\/2013\/11\/Alexis-Piano-Playing1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"977\" \/>\n\t<meta property=\"og:image:height\" content=\"653\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"sleigh\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"sleigh\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/\"},\"author\":{\"name\":\"sleigh\",\"@id\":\"https:\/\/healthit.gov\/blog\/#\/schema\/person\/0719592fcc77f0e269f191216da0aae7\"},\"headline\":\"How Health IT Can Empower Caregivers: Alexis\u2019s Story\",\"datePublished\":\"2013-11-19T14:00:37+00:00\",\"dateModified\":\"2026-01-05T21:45:32+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/\"},\"wordCount\":1103,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\/\/healthit.gov\/blog\/#organization\"},\"image\":{\"@id\":\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/healthit.gov\/blog\/wp-content\/uploads\/sites\/4\/2013\/11\/Alexis-Piano-Playing1.jpg?w=977\",\"articleSection\":[\"Consumer Engagement\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/\",\"url\":\"https:\/\/healthit.gov\/blog\/consumer\/health-empower-caregivers-alexiss-story\/\",\"name\":\"How Health IT Can Empower Caregivers: Alexis\u2019s Story - 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