Vision

Mission

Long-Range Goal

Background

• Most pediatric chronic conditions are uncommon - for many diagnoses, primary care physicians are likely to have, at most, 1-3 patients (see Diagnosis Prevalence List).
• However, the cumulative prevalence of chronic conditions is substantial - 18.5% of children meet the criteria for classification as children and youth with special health care needs (CYSHCN) (see Data Resource Center for Child & Adolescent Health).
• Primary care clinicians need current knowledge about the many chronic conditions and available community resources to provide high-quality care for all CYSHCN; yet, this can be difficult to keep up with or access essential information in one place.
• Families of CYSHCN also seek reliable information about their child’s particular condition and how to raise a child with special health care needs, manage their day-to-day care, navigate the health care system, and pay medical costs.
• Numerous other professionals, such as care coordinators, therapists, dentists, educators, and pediatric and adult subspecialists, could use information about caring for CYSHCN.

Because the Medical Home Portal believes that clinicians, families, and professionals sharing information and working together as partners in the medical home model will improve outcomes for CYSHCN, the Medical Home Portal, as of September 2022, offers:

• 60 clinical diagnosis and management modules addressing the comprehensive primary care of various conditions, many of which are uncommon
• 44 newborn disorder pages providing guidance on the immediate steps a pediatric clinician should consider after being notified of an abnormal newborn screen for a patient
• 136 additional clinical care topics and issues, such as common concerns, feeding and nutrition, guidelines and algorithms, and screening and prevention
• 124 pages to help families care for their child and adolescent with special health care needs
• Services for CYSHCN and their families: 3565 in Utah, 477 in New Mexico, 3917 in Nevada, 1001 in Rhode Island. In July 2022, the Ohio Medical Home Portal was launched in a new partnership with the Ohio Department of Health, Bureau of Maternal, Child & Family Health.
• More than 6,200 links to other reliable websites or downloadable information and 5,500 citations to scientific and medical literature with the evidence behind recommendations or to explore topics in greater depth

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 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 backbone of the Portal comes from in-kind, collaborative, and moral support from many individuals.

Key current funding for improving the Portal comes from 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 ( 258 KB). The PPS-MHP project is a collaboration among the Portal, the Department of Biomedical Informatics, the Utah Department of Health & Human Services, the Utah Health Information Network (UHIN), and Intermountain Healthcare. See the Project link for more information.

As of September 2022, the Portal is collaborating with and receiving support from:

• Utah DHHS Family Health Unit
• Nevada Division of Public and Behavioral Health, Title V Maternal and Child Health Program
• Rhode Island Title V/Maternal and Child Health Program
• Children’s Medical Services/Children with Special Needs, New Mexico Department of Health
• Ohio Department of Health, Bureau of Maternal, Child & Family Health

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.

See A Short History of the Medical Home Portal to learn more about the Portal's history.

The Portal team includes University faculty and staff and leaders and staff from Utah Parent Center.

The team includes:

• Mindy Tueller, MS, MCHES - Director of Operations
• Jennifer Goldman, MD, MRP, FAAP - Associate Professor of Pediatrics / Editor-in-Chief and Medical Director of the Medical Home Portal
• Dale-Marie Herring - Managing Editor
• Lynne Kerr, MD, PhD - Medical Editor
• Chuck Norlin, MD - Emeritus Editor
• Efrain Chu-Jon - Lead Software Developer
• Athena Parker, MPH, CHES - Services Support Manager
• Shaunelle Eckman - Senior Technology Specialist
• Michelle Redfield - Administrative Assistant
• Alfred N. Romeo, RN, PhD - Services and Resources Consultant
• Esperanza Reyes, MS - Family Consultant
• Tina Persels - Family Consultant and Content Developer
• Guilherme Del Fiol, MD, PhD - Consultant/Medical Informaticist

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. For information about editorial policies for clinical content and the roles of Portal authors, reviewers, and the editorial board, please see the Editorial Policy.

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 Ohio. 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 patients, families, and professionals. Please click the Contact button to let us know of your interest.

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.

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

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 information on the Portal does not replace or substitute talking with your provider. Consult 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 to ask questions or give suggestions.

The University of Utah Department of Pediatrics retains all copyrights for materials published on the Portal. Portal content is covered under an Attribution-NonCommercial-NoDerivatives 4.0 International license. Content on the Portal may be used by you and others for non-commercial purposes with appropriate attribution. This license prohibits individuals from remixing, transforming, or building upon published Portal content without first obtaining permission from the Medical Home Portal. Portal authors may use the content they've developed for other purposes; please Contact us for a waiver of the reuse prohibition.

The Medical Home Portal does not host or receive funding from advertising or 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 CYSHCN 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 consumer/parent representatives contracted through  Utah Family Voices, all of whom deny financial conflicts of interest. Our editors also review content for potential conflicts before publication.