About the Medical Home Portal

Overview of the Medical Home Portal

The Portal’s Vision: All children and youth with special health care needs (CYSHCN) and their families achieve the best possible outcomes for their health, well-being, and success
The Portal’s Mission: To assist and support professionals and families in working together (the Medical Home model) to care and advocate for CYSHCN by providing reliable and useful information about their conditions and caring for them and knowledge of valuable local and national services and resources
The Portal’s Long-Range Goal: To improve outcomes for CYSHCN and their families by enhancing the availability and quality of healthcare, related services, and coordination of care
About the Portal
The premises behind the Portal's development include:
  • Most chronic conditions are uncommon or rare - for many diagnoses, primary care physicians are likely to have only one, or a few, patients
  • The cumulative prevalence of chronic conditions, however, is substantial - 15.1% of children meet criteria for classification as children and youth with special health care needs (CYSHCN) (see Prevalence of CSHCN (HRSA/MCHB) and the Diagnosis Prevalence List)
  • Effective care coordination provides substantial value for CYSHCN, their families, and their clinicians and requires knowledge of their conditions, available resources, and relevant service providers
  • Maintaining sufficient current knowledge of medical information and community resources to provide high quality primary care for each of these conditions is impossible
  • Families of CYSHCN desire more information about raising a child with special health care needs, about their condition(s), and about how to manage their care and navigate the health care system
  • Families are motivated and may have more time than clinicians to devote to learning about their child's condition and to finding resources
  • Families will soon learn to understand relatively technical language and will be better able to understand and communicate with professionals when they do
  • Numerous other professionals (therapists, dentists, care coordinators, educators, pediatric and adult subspecialists, etc.) could also benefit from information about various aspects of caring for CYSHCN
  • Physicians and Families sharing information and working together as partners in the Medical Home model will improve outcomes for CYSHCN
The Medical Home Portal serves CYSHCN by addressing the information and resource access needs of clinicians, care coordinators, other healthcare professionals, educators, families and patients.

As of December 2017, the Portal contains
  • over 500 pages of content and resources, including
    • 52 "Diagnosis Modules" addressing the comprehensive primary care of those conditions
    • 37 Newborn Disorder pages addressing primary care response to notification of abnormal results of newborn screening for those conditions
  • over 5000 links to other reliable and valuable websites or downloadable information
  • over 3200 citations of scientific and other expert literature to provide users with the evidence behind recommendations or to explore topics in greater depth
  • Information on services for CSHCN and their families: more than 4300 in Utah, 3200 in Idaho, 2500 in New Mexico, 1800 in Nevada, 650 in Rhode Island, and 750 in Montana

The Portal's Home and Funding

The Medical Home Portal is a project of the Department of Pediatrics, University of Utah Health. Since its inception in 2001, funding for the Portal has come from a variety of foundations, grants, contracts, and gifts from many organizations, none of which involve any commercial stipulations or expectations. Most of those organizations are acknowledged on our Our Supporters & Partners page. The Portal has also been blessed with in-kind, collaborative, and moral support from many individuals.
Key current funding for improving the Portal is from our role in the Pediatric Patient Summary-Medical Home Portal Project (PPS-MHP), supported through the Utah Medicaid program with funds allocated by the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009. The PPS-MHP project is a collaboration among the Portal, the Department of Biomedical Informatics, the Utah Department of Health (UDOH), the Utah Health Information Network (UHIN), and Intermountain Healthcare. See the Project link for more information.
As of December, 2017, the Portal is collaborating with and receiving support from the Utah Maternal and Child Health Bureau (UDOH), Nevada Division of Public and Behavioral Health, Title V Maternal and Child Health Program, and Rhode Island Title V/Maternal and Child Health Program. We are working on contracts with Montana Department of Public Health and Human Services, Children's Special Health Services and Children’s Medical Services/Children with Special Needs, New Mexico Department of Health and will continue to seek support from Idaho. We are eager to collaborate with other states or regions to offer information about their local service providers - see Partnering with the Portal for more information.
To learn more about the Portal's background, see A Short History of the Medical Home Portal.

Our Team

The Portal team includes University faculty and staff and leaders and staff from Utah Family Voices. The team includes:
  • Chuck Norlin, MD - Medical Home Portal Director and Editor
  • Mindy Tueller, MS - Portal Manager
  • Ryan Stokes - Lead Programmer
  • Efrain Chu-Jon - Software Engineer
  • Dale-Marie Herring - Technical Editor
  • Jennifer Goldman-Luthy, MD, MRP - Medical Editor
  • Lynne M. Kerr, MD, PhD - Medical Editor
  • Lennea Bower, MA - Services Support Manager
  • Tay Haines - Services and Resources Coordinator
  • Al Romeo, RN, PhD - Services and Resources Consultant
  • Gina Pola-Money - Family Consultant
  • Tina Persels - Family Consultant and Content Developer
  • Guilherme Del Fiol, MD, PhD - Ad hoc Consultant/Medical Informaticist
Authors and reviewers of the Portal's medical content are generally experts in those conditions and are faculty at the University of Utah, other schools of medicine, or in clinical practice outside of universities. Clicking on their name in the Authors section of any Diagnosis Module or Newborn Disorder page will provide a brief bio. Content in the For Parents and Families section is authored or reviewed by parents of children or youth with special healthcare needs, primarily our Family Consultants from Utah Family Voices.

Partnering with the Medical Home Portal

Originally developed in and for Utah, the Portal was reprogrammed between 2005 and 2008, with support from a National Library of Medicine grant (1 G08 LM007680-01A2), to enable partnering with other states and regions to include their local service provider information. Our current partners are Montana, Nevada, New Mexico, Rhode Island, Utah, and Idaho. For more detail, see Partnering with the Portal. We are very interested in hearing from states or regions that would like to partner with us to offer this service for their families and professionals. Please click the Contact button to let us know of your interest.

How to Use the Medical Home Portal

The Guide to the Portal can help you learn more about the Portal and how to navigate it.
We've also created a series of very short videos showing how to use sections and features of the Medical Home Portal. The How To Use the Medical Home Portal video series is posted on the Portal's YouTube channel.

Policies, Disclaimers, Legal Stuff

The Portal maintains a searchable database of service providers (organizations, companies, or individual providers, physical or virtual, with whom/which a personal interaction is involved) that have been identified by Portal staff or partner organizations as useful for CYSHCN in their state. The Portal also contains links to websites of interest, tools for clinicians, citations, and helpful articles, and more. Below you’ll find the Portal’s policies on selecting entries to include.

Disclaimers, Privacy and Copyright

The Medical Home Portal is a service of the University of Utah and exists for educational purposes only. See the University of Utah’s site for more detailed information about Privacy Policies and Disclaimers. The Medical Home Portal Development Team does not provide information for or about the medical conditions of individual patients. The Portal supports partnerships between patients and their primary care providers. The information on the Portal does not replace or substitute for talking with your provider. Consult with your provider before starting, changing, or stopping any treatments or medications.
The Medical Home Portal does not collect or store medical or personal information from users. However, user tracking information (network address, pages visited, time on pages, etc.) is collected for site improvement and grant reporting purposes. Information is collected using Google Analytics and server logs. Cookies may be placed on a user’s computer, e.g. upon selecting a state in the “Choose services by state” box to enable the Portal to automatically display services and links from the user’s chosen state the next time they return to the Portal. Users can choose a setting on their browser to deny cookies or disable them. Users may voluntarily choose to complete surveys posted occasionally on the site. The Feedback page allows users the option to enter an email address and/or name to allow responses to user-entered questions or input.
The Medical Home Portal is a program of the University of Utah Department of Pediatrics, which retains all copyrights for materials published on the Portal. Portal content is covered under a Creative Commons Attribution-ShareAlike 2.0 Generic License. Content on the Portal may be used by you and others for non-commercial purposes with appropriate attribution. This license prohibits individuals from altering, transforming, or building upon published Portal content without first obtaining permission from the Portal. To allow authors to use content they develop for other purposes, a waiver of this prohibition will be provided to authors upon request.

Advertising and Funding

The Medical Home Portal does not host or receive funding from advertising or from the display of commercial content. Commercial organizations or products may be mentioned as examples only and do not constitute an endorsement or recommendation. Professional or commercial organizations that offer services for CSHCN may submit information for local/state service listings or links through the Feedback page.
The Portal’s content is written by volunteer physician experts, staff physician authors and editors, and by consumer/parent representatives contracted through Utah Family Voices, all of whom deny financial conflicts of interest. Content is also reviewed by our editors for potential conflicts prior to publication.
The Medical Home Portal receives grants and other funding from charitable foundations, business organizations, and local, state, and federal government organizations. Current funding sources are listed on the Our Supporters & Partners page.

Authors & Reviewers

Initial Publication: March 2008; Last Update: January 2018
Current Authors and Reviewers (click on name for bio):
Author: Chuck Norlin, MD
Authoring history
(Limited detail is available on authoring dates before 2014.)
AAuthor; CAContributing Author; SASenior Author; RReviewer