1. I have no relevant financial relationships with the manufacturers of any commercial products and/or provider of commercial services discussed in this CME activity. I do not intend to discuss an unapproved/investigative use of a commercial product/device in their presentation. Newborn Screen Positive Infant ACTion Learning Collaborative Learning Session II Kim Giuliano, MD and Anna Winfield, MD Cleveland Clinic Childrens Hospital February 12, 2011

2. 11 primary care pediatric offices in Cleveland, OH and surrounding suburbs 2 pilot sites for QuINN Newborn Screen Positive Infant ACTion Project : Main Campus 7 pediatricians, 3 RNs, 3 MAs Westown Office 2 staff pediatricians, 2 float pediatricians, 1 RN, remainder staff MAs Both offices are teaching sites for residents and medical students

3. Team Members Kim Giuliano, MDAnna Winfield, MD Mo VanGunten, RNKristen Kolarik, MA

4. Aim Statement – All Newborns By November 2010, Cleveland Clinic Childrens Hospitals (CCCH) Main Campus and Westown offices will improve newborn screening processes by implementing AAPs recommendations. In 2011, sustainable improvement measures will be spread to additional CCCH General Pediatric Offices. Specific Aims: 100% of infants receive assessment at first visit for completion of newborn screening. 100% of charts are flagged for patients who are not screened. 100% of newborn screening results are received before the 2- to 4-week visit. 100% of in-range newborn screening results are documented in the infants chart and shared with parents.

5. Aim Statement – Abnormal NBS By November 2010, CCCHs Main Campus and Westown offices will improve the processes for managing out-of-range newborn screening results by implementing AAPs recommendations. In 2011, sustainable improvement measures will be spread to additional CCCH General Pediatric Offices. Specific Aims: 100% of parents of infants with an out-of-range newborn screening result receive condition-specific information and support. 100% of infants with an out-of-range screening result receive confirmatory testing and/or definitive consultation with subspecialists. 100% of false out-of-range newborn screening results are documented in the infants chart and discussed with parents. 100% of children given a diagnosis of a significant medical condition are identified as a child with special health care needs and are provided a medical home.

6. Changes Implemented Reliable Systems of Care NBS Office Policy Statement Tracking systems (log sheet at Westown, binder at Main Campus) EMR templates edited for newborn, 2-4 week visit, 2 month visit Registry for abnormal NBS and CSHCN

8. Changes Implemented Community-based Care Referral line for metabolic specialists Contacted Ohio Department of Health – arranged contact person for missing NBS reports Contacted nursery hospitalists to facilitate discharge communication and education re: NBS

9. Changes Implemented Active Well-informed Patients Newborn packets given at first office visit Hospitalist outreach to ensure same pamphlet is given at all CCCH sites

10. Cycles of Improvement EMR templates #1 PLAN Dot phrase created to insert into already existing templates to document NBS completion and sharing of results with parents. Way to test the documentation phrase without changing the template for all providers in the office. DO Dr. Giuliano and Dr. Winfield used for 1 week Forgot to use for one newborn STUDY Good way to document but relies on provider to remember ACT Change template for all providers

11. Cycles of Improvement EMR templates #2 PLAN Change template for all providers at both offices DO All providers informed Some providers continued using old templates STUDY Easy to document but correct template needs to be used ACT Removed old templates from providers favorites list Sent email communication to all residents and providers that do not have regular face-to-face contact

12. Cycles of Improvement EMR templates #3 PLAN All providers using same template DO All providers made the change STUDY Improvement noted in run charts for documentation of NBS completion and sharing of results with parents ACT Adopt as final plan for Westown and Main Campus

15. Cycles of Improvement EMR templates #4 PLAN: Designing system wide SmartSets that will include our current templates (currently in progress)

16. Cycles of Improvement Log Sheets #1 PLAN Log sheet created for documentation of NBS results/status for each newborn seen in practice DO Dr. Giuliano and Dr. Winfield used for 1 week STUDY Complete and easy to view documentation 100% of newborns seen in pilot week had complete sheets ACT Institute use of log sheet for ALL newborns

17. LOG SHEET

18. Cycles of Improvement Log Sheets #2 PLAN Utilize log sheet for all newborns seen by all providers DO Office staff and providers instructed in use Did not have opportunity to educate all providers face to face STUDY Main Campus office consistently used log sheets Westown office did not consistently create log sheets Lack of paper chart resulted in loss of information <25% of newborns seen at Westown by other providers had complete log sheets ACT Brainstorm alternate means of documentation for Westown Adopt but continue to study at Main Campus

19. Cycles of Improvement Log Sheets #3 PLAN Reformulated log sheet from one document per patient to centralized recording site DO Educate one medical assistant in use of centralized log sheet Dr. Winfield responsible for tracking data weekly STUDY More consistent use of tracking data Easy to review ACT Utilize centralized log sheet for all newborns seen at Westown practice

21. Results EMR template changed Residents and new MDs started Old templates removed from favorites, email to providers

22. Results Tracking binders Westown changed to one tracking sheet

23. Results at 1mo visit (Approaching 100% at 2 mo visit) EMR template changed Old templates removed from favorites, email to providers

24. Results Educated providers about ACT sheets & abnormal newborn screening guide made ACT sheets used for unusual metabolic conditions only

25. What You Have Learned Lessons Learned Team work is essential in the office Partnership with other organizations is valuable Communication is key What works for one site may not work for another Important to track measures at appropriate time interval and for areas that are truly in need of change Challenges and setbacks Hard to make large changes in a big institution Dr. Winfield cut back hours around same time new physicians started in her office Dr. Giuliano and Dr. Winfield at different physical locations

26. General Lessons Learned What contributed to your progress so far Teamwork EMR templates Tracking processes Anticipated issues Some sites may not identify NBS as an area in need of improvement Some sites may not feel they have the time to invest in similar project Getting IT to help change the EMR Health Maintenance Alert Hospitalists communication