March 2014

We have embarked on some major improvements in the design and usability of the Medical Home Portal. What you see today was designed in 2009 – almost last century in Web time. :-) Capabilities in web design and function, and in adapting to mobile formats (tablets and phones), have far outpaced what we had to work with then.

• Site redesign – we've contracted with Solution Stream (solutionstream.com), a local company, to rework and improve the Portal's look, feel, and navigation, and adapt it to work better on mobile devices.
• Service and Resources lists – we are designing tools to enable users to create personalized lists of service providers and other resources that they "like." Users will be able to create these lists themselves or start with a list generated automatically based on a "profile" that will include a diagnosis and zip code. These will be savable (and will always have the latest information available about the service providers), editable (add other providers or resources), and sharable with others.
• Search – we will soon be upgrading our search engine and greatly enhancing the display of search results. With the variety of types of information and resources in the Portal, sorting and displaying search results in useful ways has been a challenge – we think currently available tools will enable us to improve this substantially.

We hope that most of these improvements will be available to you by mid-summer. We welcome your ideas and suggestions on how to improve the Portal and it's usefulness to you and your patients, families, and others – please email mindy.tueller@utah.edu or chuck.norlin@hsc.utah.edu or use the Feedback button at the top of every Portal page.

As we've mentioned before, the Portal has been busy working to improve and expand the content in our For Parents & Families section. We feel this is an incredibly important part of the Portal because here families and the professionals who work with them can get information on topics that come up regularly in the journey with a child with special needs, such as Finding Quality Information, Managing and Coordinating Care, Taking Care of Yourself and Your Family, Early Services, Education, Transitions, Assistive Technology, Recreation, and on and on. We've recently added a new sub-section we call Story Central. Here you'll find some pages with advice and as well as individuals' stories.

New Content - The following new pages are now available on the Portal's "For Parents & Families" section:

• Service, Support, and Therapy Animals
• Hospital Care
  • Hospital to Home/Community
  • Hospital Admissions, Inpatient Stay, and Discharge
  • Child Life Services

Upcoming Content - Watch for the following new and updated content modules and pages soon:

• Galactosemia (Diagnosis Module)
• Cystic Fibrosis (Diagnosis Module)
• Pediatric Obesity (Diagnosis Module)
• Tracheostomy (Medical Technology)

We're delighted that New Mexico and Montana have both been busy adding information to the Portal's database for services in their states. To find a service provider in any of the Portal's partner states, be sure to choose the correct state from the list in the upper left corner of the Portal.

By Al Romeo, RN, PhD

In Utah and many states, the first newborn screening is done in the first days of life before discharge from the hospital. The Medical Home usually does a second screening at the two-week well-child check. A blood sample is collected, labeled, and shipped to the Newborn Screening Program in that state, and results, either negative or positive, are returned to the Medical Home. To find the Newborn Screening program in your state, please visit Baby's First Test: Conditions Screened by State (Genetic Alliance).

In the event of a positive test, depending on the condition, the Medical Home will need to quickly advise the family regarding diet restrictions and any treatments to prevent complications before appointments with specialists. The Medical Home will help arrange appointments with geneticists, dieticians, and other specialists as needed. For more information on the conditions, first steps, and specialists, see the 35 newborn disorders screened for in Utah on Newborn Disorders.

To help improve the system of services, 7 regional genetics collaboratives that cover the whole U.S. work with the states in their region in the areas of consumer advocacy, emergency preparedness, health information technology, Medical Home, newborn screening, and telegenetics. The Mountain States Genetics Regional Collaborative (MSGRC) works with Utah and seven other states in the mountain region. To learn more, visit Mountain States Regional Genetics Network (MSRGN).