June 2014

What is the Medical Home Portal?

Every so often, we like to reconnect with the founding vision of the Medical Home Portal. That vision followed a 1998 survey of Utah pediatricians asking what they would need to improve care for kids with chronic conditions. By far, their top 3 answers were:
  1. better knowledge of local resources to help with their care
  2. practice-based care coordinators to link families and resources
  3. best practice guidelines for common chronic conditions
Focused on primary care teams and families and based on the Patient/Family-Centered Medical Home model, the Portal strives to be a “one stop shop” for information and resources to support referral processes and care coordination, particularly for children with special health care needs (CSHCN). The Portal provides:
  • Just-in-time clinical decision support for primary care clinicians caring for children with over 40 chronic conditions
  • Just-in-time information to support clinicians and parents responding to abnormal newborn screening tests
  • Information to support parents in caring for their CYSHCN, and for their families, from birth or diagnosis through transition to adulthood
  • Information for clinicians to support their building a Medical Home, providing comprehensive care, integrating best practices, and partnering with families
  • Information about local professional and community providers in 4 states to help CYSHCN and their families access services and to support robust referral practices
  • Information about and links to many high value resources and tools, both within the Portal and throughout the Web, each briefly annotated
  • Google Translate is available to translate the entire site; custom Spanish translations available for the Diagnosis FAQ pages in the “For Families” section

New & Updated Content on the Portal

Childhood Obesity Diagnosis module Childhood Obesity (FAQ) - For Parents & Families
Tracheostomy - Medical Technologies Materal Depression Screening - Screening & Prevention
Galactosemia - Diagnosis module Galactosemia (FAQ) - For Parents & Families
Healthy Relationships - For Parents &
Responding to a Diagnosis - For Parents & Families
Foster Care - Diagnosis module Foster Care (FAQ) - For Parents & Families

Upcoming on the Portal

Diagnosis Modules:
  • Cerebral Palsy (updated)
  • Homocystinuria (new)
  • Prader Willi (updated)
  • Substance Abuse (updated)
  • Very Pre-term Infants (new)
For Parents & Families:
  • Adaptive Driving (new)
  • Keeping Medical Records (new)
  • Partnering with Health Care Providers (new)
  • Understanding the ACA and the Health Insurance Marketplace (new)

Other Projects/Updates

We’re pleased to welcome Dr. Meghan Candee, University of Utah School of Medicine Pediatric Neurologist, to the Portal team as a medical content writer. She starts July 1st.
Our Customized Lists project is gaining steam. Consider being one of the practices to pilot it late this summer. Your team will be able to:
  • Create customized lists of local service providers from the Portal’s database based on type, location, and other factors
  • Save, print, and share these lists
  • Stay up to date with the latest information on providers you refer to

Your Medical Home - Help Utah get a Better Medical Home Score

By Al Romeo, RN, PhD
The National Survey of CSHCN (NS-CSHCN) ranks states in providing a medical home for children with special health care needs (CSHCN). About every 4 years, a random sample of parents of CSHCN are asked a long list of questions, nineteen of which are compiled to reflect the “percentage of children who receive coordinated, ongoing, comprehensive care within a medical home.” (See Child Health Data National Survey of CSHCN.)
Utah’s percentage decreased from 52.2% in 2005/06 to 46.2% in 2009/10. While a number of factors may affect parent’s responses to the survey, some examples, listed below, may help guide improvements in how the medical home delivers care.
NS-CSHCN Question to Parents Medical Home Tactic
Does your child have a usual source
of primary care, including well-child
and sick-child visits?
Try to extend clinic hours and have someone available by phone to ensure the child can see the same clinician for acute care visits.
Does your clinician listen carefully to you?
Consider scheduling longer visits for children with chronic conditions and address the parent’s and child’s questions first.
Does your clinician help you feel
like you are partners in your child’s
Written care plans can help engage parents in their child’s care.
Have you had any problems receiving
referrals to specialists?
Follow up with families to assure that important referrals were scheduled.
Factors hard to control:
  • Responses to other questions may be affected by the child’s insurance, or lack thereof.
  • Children without insurance and families that move often may not be able to access a medical home.
  • Underinsured families may have challenges accessing therapies and specialists.

We encourage medical home teams to work with professional associations, such as the Utah Chapter of the American Academy of Pediatrics, and community organizations to support insurance reforms, funding for community health clinics, and other improvements in the healthcare system.

Follow the Portal on Facebook & Twitter!

Stay on top of what's happening with the Portal and be notified about new Portal Periodical issues on our Medical Home Portal Facebook page and on Twitter: @medhomeportal.

Authors & Reviewers

Initial publication: June 2014; last update/revision: November 2018
Current Authors and Reviewers:
Author: Alfred N. Romeo, RN, PhD