Utah Hemophilia Foundation

Grants and Research
As one of 3 specialty clinics at Primary Children’s Medical Center (PCMC), the IHTC is proud to be participating in the Utah Children’s Medical Home Demonstration Project (MHDP), funded by the Centers for Medicare and Medicaid Services (CMS) through the CHIPRA Quality Demonstrations grant program.

What is a Medical Home you ask? As described by the American Academy of Pediatrics (AAP), the ideal Medical Home is one that provides “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective care.” As a specialty clinic, the IHTC is considered a Medical Home Neighbor, in which the same principles apply as compared to a Medical Home (the primary care practice).  By participating in this demonstration project, the IHTC is charged with becoming more “medical home-like.” To do this, we have partnered with several parents to address pressing issues at the IHTC that stand in the way of providing the best care. You will be hearing from our parent partners in the coming months to get your feedback on how we are doing, as well as ideas on how to move forward. We are very proud of our Parent Partners, and all their hard work. Staci Stout designed a wonderful logo and postcard to get the word out. Our current partners, Sarah Diederich and Cayr Curtis are learning all about the program, and they now have a private Facebook page entitled, “Utah Hemophilia Family Neighborhood.” Please feel free to join and share your thoughts and feelings. Since starting this project in March 2011, we have implemented changes to shorten the time spent in the annual clinic visit. The next time you come to your annual comprehensive clinic visit, we hope you notice you will spend less time alone in the room waiting for us to come in and see you. Our current project is determining the most effective efficient method for accessing care in the evenings or on the weekends (yes, even if only for an IV start). Feel free to visit http://www.medicalhomeportal.org/medical-home for more information on Medical Home and feel free to contact the IHTC at 801-662-4726 with your questions or comments.

Parents Empowering Parents
The IHTC was also awarded the grant for the Parents Empowering Parents (PEP) program, which is a national course developed and implemented by social workers, nurses, and parents to assist in the development of child management skills for parents of children with bleeding disorders. We anticipate implementing this program in Utah sometime in March 2012. Please contact Susan Earl, MSW at 801-662-4557 if you are interested in being involved.

Changes at the IHTC
Our Research Coordinator, Jeannette Buehler, is hard at work with several upcoming changes. As of the end of September the UDC (Universal Data Collection) system, run by the Center for Disease Control will no longer be an active study at our HTC. ATHN (The American Thrombosis & Hemostatis Network) will be taking over for the UDC. This is an exciting time to get on board with ATHN! Our HTC and ATHN are committed to improving care of people with bleeding and clotting disorders. ATHN is helping the Intermountain Hemophilia and Thrombosis Center to create a safe and secure national database of patient health data that can be used to improve care and to support vital research. At your next visit, please let us know if you'd like some more information on how you can become a participant in this important project. In the meantime, please visit ATHN's website at www.athn.org

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