Healthcare Notebook & the Medical Home Portal
Helping Youth Learn to Manage Their Medical Care
Does your young adult know what to do in a health emergency? If they have a chronic condition, do they know how to make the shift to an adult doctor? Does your young adult know how to find a new doctor or fill a prescription? Can your young adult manage their mental health? What can we do as caregivers to help make this transition to adult healthcare easier? What tools are available to parents, caregivers, and to our young adults?
CHOICES, the Transition University resource book, is full of information related to healthcare transition. Transitioning from pediatric to adult healthcare can be found in the BLUE section of the book. CHOICES is also available in Spanish. Resources can also be found in the BLUE section of the Youth Transition Book found here in English and Spanish.
How to Create a Healthcare Notebook:
Creating a Healthcare Notebook is just one tool that can help your youth with their transition. A transition notebook is an organizing tool for youth with disabilities or chronic health illnesses. Use a transition notebook to keep track of important information about your young adult’s health care and the services they need as they move into independence. They may get information and paperwork from many sources. A transition notebook helps you/them organize the most important information in a central place. A transition notebook makes it easier for you/them to find and share key information with others whom they choose to be part of their care team; such as a family, doctor, or other providers.
Step 1:
Gather health information you already have about your young adult. Some of the information you may want to include are reports from recent doctor’s visits, a recent summary of a hospital stay, this year’s school plan, test results, or informational pamphlets.
Step 2:
Create pages that could help you keep track of information about your young adult’s health or care. Examples: a page to track medical events (event diary), medicine changes, phone numbers for providers or specialists, health history including surgeries, procedures, lab work, allergies, etc. Document any needed support services, medical supplies, or equipment.
Step 3:
Add new information to the notebook whenever the treatment, medication, or care changes. Decide which information is most important to keep. What information is referenced frequently? What information do people caring for your young adult need? Consider storing other information in a file drawer or box where you can find it if needed. Consider having your young adult take the notebook with them to appointments and visits so information will be easy to find.
Care Notebook:
Utah Medical Home Portal:
The Utah Medical Home Portal is a unique source of reliable information about children and youth with special health care needs (CYSHCN), offering a “one-stop shop” for their families, physicians, medical home teams and other professionals and caregivers.
Link to the Utah Medical Home Portal:
https://ut.medicalhomeportal.org/
Additional Helpful Links
Link to the Utah Medical Home Portal Adolescent Health Transition Program:
https://ut.medicalhomeportal.org/services/category/417
Website link: Transition University Health Living
https://utahparentcenter.org/transition-university/healthy-living/
