Submission #14649

Metabolic Centers Quality Improvement Project
http://www.negenetics.org/Work-Groups/quality-improvement/default.aspx
Monica McClain
Research Associate Professor
Institute on Disability, UNH
Tobacco Use, Clinical care
Children/youth with special healthcare needs, Infant (< one year), Toddler (>1 yr to 3 yrs), Preschoolers (>3yrs to 6 yrs), Elementary age children (>6 to 10 years), 6. Tweens (>10 year to 13), Teenager (>13 to 18 years)
Fletcher Allen, University of Vermont Maine Medical Center Children's Hospital Boston University of Connecticut Health Center Rhode Island Children's Hospital Massachusetts General Hospital Tufts Floating Hospital for Children U Mass Medical Center
2007-2017
Metabolic Centers QI Learning Collaborative (LC) Addresses priorities 10 (Other-improve quality of care for patients and families with conditions identifiable by NBS). The NEGC adopted in 2007 the "Learning Collaborative" methods articulated by Institute for Healthcare Improvement to address genetic healthcare improvement. This activity has been successful and we propose to continue and expand the Metabolic QI LC. To date, eight metabolic centers consisting of metabolic physicians, metabolic nutritionists and family members have participated in the initial LC. Care processes have been agreed upon; data collection sheets have been created, refined and implemented; use of data sheets is 100%; and, importantly, the members of the LC have identified ideas for improvement to be tested in the next 5 year NEGC funding cycle. Each metabolic team has agreed to: • Connect Collaborative goals to their organization's strategic initiative • Perform pre-work activities and measures to prepare for Learning Sessions • Perform tests of changes that will lead to widespread implementation in the practice or clinic • Use a registry provided by the NEGC to track care • Report on each collaborative goal/measure and willingly share their progress and challenges with other LC teams • Post data and summary reports on the NEGC secure website • Participate in regular LC conference calls. The goal of Metabolic Centers QI LC is to improve the health and health care of individuals with inherited metabolic conditions identified by newborn screening in New England. The objective and activities to be conducted are: Objective: Engage all centers in continuous quality improvement of metabolic center care of patients with inborn errors of metabolism (PKU and MCAD). a. Add the final three metabolic centers in NE to the LC b. Adopt the current PKU guidelines as comparison for care process data developed by the Metabolic centers as part of the QI LC process c. Modify the QI Registry to accommodate American Board of Medical Genetics (ABMG) Maintenance of Certification (MOC) module on PKU d. Expand the Metabolic QI LC to centers in other Regions (e.g., NYMAC). The NEGC evaluation will consist of documenting and reporting: # of centers with IRB waivers and BAAs on file; # of patients with complete data in the registry; reports presented to the metabolic teams; # of publication; recommendations made about current care processes and standard care guidelines; and # of MOC reports provided to metabolic team members.
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