About the Medical Home Portal

The Medical Home Portal aims to provide ready access to reliable and useful information for professionals and families to help them care and advocate for children and youth with special health care needs (CYSHCN), as partners in the Medical Home model. The long-range goal is to improve outcomes for CYSHCN and their families by enhancing the availability and quality of healthcare, related services, and coordination of care.

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 - 13.9% of children meet criteria for classification as children with special health care needs (CSHCN) (see the diagnosis prevalence list);
• Maintaining current knowledge of medical information and community resources for each of these conditions is impossible;
• Families of CYSHCN are motivated and may have more time than physicians 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 working together as partners in the Medical Home model will be best able to 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 (April, 2008) contains

• over 680 pages of content and resources,
• over 800 links to other reliable and valuable web sites or downloadable information,
• over 600 citations of scientific and other expert literature to provide users with the evidence behind recommendations or to explore topics in greater depth
• information on more than 2000 local (Utah) services for CYSHCN and their families.

Though developed in and for Utah, the Portal is being 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. The reprogramming takes advantage of a native XML environment and will make it possible to substitute another state/region's local services data so that it 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. We anticipate that the programming should be near complete toward the end of 2008, but that the ability to offer such integration will begin before then. Please click the Contact button to let usknow of your interest.

Development of the Medical Home Portal began as part of a Medical Home implementation project in 2001 and as a response to a 1998 survey of pediatricians in Utah that identified as needs to improve their care of children with chronic conditions:

• 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.

After a resource booklet proved to be outdated within a month after it was published, we 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 Medical Center 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 who were expert in developing web-based resources to support medical education. 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, and we now have active partners in Oklahoma (University of Oklahoma Health Sciences Center, Department of Pediatrics) and the Heartland Regional Genetics and Newborn Screening Collaborative.