Newborn Screening Discharge Summary

1. Newborn Screening Discharge Summary Brief Profile Proposal for 2009/10 presented to the IT Infrastructure Planning Committee Alan E Zuckerman MD FAAP September 15, 2009

2. The Problem • Newborn hospital discharge represents the first transfer of care in a person’s life, It is a highly visible event that occurs over 4 million times per year • The Newborn Screening Use currently under development at HITSP has identified this profile as a gap in standards for collecting clinical data needed for referrals • Because all newborns must be seen within 2 or 3 days of discharge, a summary is required quickly and much of the data can be pre-populated from other sources and then integrate into ambulatory EHR • The proposed profile can build upon several existing profiles for discharge summaries and patient summaries, but more importantly, much of the data may be capable of pre-population from profiles being developed with ACOG for prenatal and labour and delivery records • Because some form of newborn discharge summary is required for all infants there are many non-standard electronic and paper forms in use • If this profile is not undertaken in this cycle, gaps will exist in the newborn screening use case and current initiatives in long term follow-up of newborn screening will not be able to use this profile

3. Use Case • The Newborn Screening Use currently under development at HITSP has identified this profile as a gap in standards for collecting clinical data needed for referrals • Long Term Follow-up for infants with conditions detected by Newborn Screening can use this profile for initial data collection including capture of relevant information from maternal prenatal records and labour and delivery records. • Routine discharge of normal infants can use this profile for transfer of care from the hospital to a primary care paediatrician or other provider

4. Proposed Standards & Systems • The profile will be based on the HL7 CDA and related CCD and other discharge summaries. This is necessary to facilitate integration into the newborn screening use case and data transfer from ACOG maternal data profiles • Necessary LOINC codes for clinical observations and measures and SNOMED codes for diagnoses and key therapies can be developed with assistance of NLM that launched a Newborn Screening Codes website on September 15, 2009 • This use case and document was part of the design considerations for the ASTM CCR and thus the HL7 CCD should contain all relevant and necessary sections for this profile except for the physical examination that is included in other discharge summary profiles to meet JCAHO requirements for hospitals. • There are no important alternatives to choose between

5. Discussion • The level of effort should be reasonable due to reuse of previous work • The scope could be constrained to normal newborns in the first year and expanded to NICU discharges in the second year to narrow the scope of work • There is significant interest in the American Academy of Pediatrics (AAP) in participating in this profile and several individuals have been identified • Alan E Zuckerman MD, Georgetown University, aez@georgetown,edu, AAP COCIT Exec, CCHIT, a general pediatrician with interest in standards development. Interoperabilty, and newborn screening • Willa Drumond MD MS, University of Florida, willa@drdrummond.net , AAP COCIT, CCHIT, a neonatologist with experience in ICU data systems • There may be interest at HHS/HRSA in the development of this profile because of their interest and mission in long term follow-up of newborn screening • Due to lack of existing standards for newborn discharge, collection of a variety of paper forms would be an important first step