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About the Medical Home Portal

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 physicians, other healthcare professionals, educators, families and patients.

The Portal currently (December 2017) contains
  • over 500 pages of content and resources
  • 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 4000 in Utah, 3300 in Idaho, 2700 in New Mexico, XXXX in Nevada, YYY in Rhode Island, and 750 in Montana
Though originally developed in and for Utah, the Portal was reprogrammed, with support from a National Library of Medicine grant (1 G08 LM007680-01A2), to enable sharing its content with other states and regions around the country. This makes it possible to substitute other states’/regions’ local services data so that they will be integrated into the content and available for browsing/searching. 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.

A Short History of the Medical Home Portal

Development of the Medical Home Portal began as part of a Medical Home implementation project in 2001, initially stimulated by a 1998 survey of pediatricians in Utah that identified the top three needs to enable them to improve their care of children with chronic conditions to be:
  • better knowledge of local resources for their care,
  • practice-based case managers to link families and resources, and
  • best practice guidelines for common chronic conditions in children.
In response, our Utah chapter of the American Academy of Pediatrics published a resource booklet, but found that much of the data was soon outdated. We then decided that a web-based information resource would be the best way to address the first and third needs.

Start-up funding was provided by the Primary Children's Hospital Foundation, which allowed us to hire student programmers and begin creating the Portal. The University of Utah's Spencer S. Eccles Health Sciences Library provided a home for the programmer as well as staff of the Knowledge Weavers who were expert in developing web-based resources to support medical education and designed the first iteration of what was then called the MedHome Portal (2006). Project leadership and medical expertise have been provided by the University's Department of Pediatrics and the Utah Department of Health (UDOH). In 2003, the UDOH's Division of Community and Family Health Services supported the project, enabling us to hire a full-time programmer and to make substantial progress toward becoming a well-designed and useful resource.

In 2006, we received the above-mentioned grant from the National Library of Medicine (NLM), which enabled us to hire a full-time programmer and to redesign the Portal completely (Medical Home Portal (2011)). The redesign included the ability to substitute the database of Utah service providers with those from other states. In 2009, the NLM funding was extended with a supplemental grant that was part of the American Recovery and Reinvestment Act.

In February 2010, the Portal began 5 years of support as a key component of the Children’s Healthcare Improvement Collaboration (CHIC) based in the Utah and Idaho Medicaid and CHIP programs and funded by the Centers for Medicare and Medicaid Services (CMS) through a Childrens Health Insurance Program Reauthorization Act (CHIPRA) Quality Demonstrations Grant, #1Z0C30547-01-00 (2/2010-2/2015), which continued for another year through a no-cost extension.
In February 2015, the Portal unveiled a completely redesigned site aimed to make its content easier to read and navigate on any device and to make its resources easier to find. The Portal served as the “shared resource” for Utah under the Utah Enhanced System for CYSHCN, a project of the Utah Bureau of Children with Special Health Care Needs funded by the State Implementation Grants for Enhancing the System of Services for Children and Youth with Special Health Care Needs through Systems Integration (D70MC275500100) from the Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB). Portal staff are heavily involved in the Utah Children's Care Coordination Network (UCCCN), which was established under the same project.
In September of 2017, the Portal was included as a key component of the Pediatric Patient Summary-Medical Home Portal (PPS-MHP) project, 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.

Policies

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 database also contains many 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 in our database.

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

Author: Chuck Norlin, MD - 6/2009
Content Last Updated: 12/2017