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American Association for Physician Leadership
American Association for Physician Leadership

Chronic Multiorgan Rare Disease: The Role of the Nurse Practitioner as a Leader of the Healthcare Team

by Deanna Allred, APRN, ANP-BC | Tracy M. Frech, MD, MS | Cynthia McComber, RN, BSN | Kathryn Peterson, MD, MS | Gloria Ortiz, CMAA | Constance McNeill, RN | Linsey Broadbent, RN, BSN | Nancy Elorreaga, LCSW | Thomas Miller, MD | Mary Beth Scholand, MD

June 8, 2017


Summary:

This article describes how a healthcare team provides value by meeting the needs of a rare disease patient and underscores the importance of a chronic multiorgan rare disease home.



Abstract:

Value in healthcare must focus on accessibility, quality, and affordability. This article describes how a healthcare team provides value by meeting the needs of a rare disease patient and underscores the importance of a chronic multiorgan rare disease home. A nurse practitioner can ensure that barriers to evaluation are removed and communication is prioritized in order to provide accessible and affordable care to a patient with rare disease without jeopardizing quality of care.


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Deanna Allred, APRN, ANP-BC

University of Utah, Department of Internal Medicine, Division of Rheumatology, Salt Lake City, Utah.


Tracy M. Frech, MD, MS

University of Utah, Department of Internal Medicine, Division of Rheumatology, Salt Lake City, Utah; phone: 801-581-4334; e-mail: tracy.frech@hsc.utah.edu.


Cynthia McComber, RN, BSN

Clinical Operations Director, University of Utah Hospital and Clinics, Salt Lake City, Utah.


Kathryn Peterson, MD, MS

University of Utah, Department of Internal Medicine, Division of Gastroenterology, Salt Lake City, Utah.


Gloria Ortiz, CMAA

University of Utah Hospital and Clinics, Salt Lake City, Utah.


Constance McNeill, RN

University of Utah Hospital and Clinics, Salt Lake City, Utah.


Linsey Broadbent, RN, BSN

University of Utah Hospital and Clinics, Salt Lake City, Utah.


Nancy Elorreaga, LCSW

University of Utah Hospital and Clinics, Salt Lake City, Utah.


Thomas Miller, MD

Chief Medical Officer, University of Utah Medical Center, Salt Lake City, Utah.


Mary Beth Scholand, MD

University of Utah, Department of Internal Medicine, Division of Pulmonary and Critical Care, Salt Lake City, Utah.

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