Newborn Screening Discharge Newborn Screening Discharge SummarySummary

Brief Profile Proposal for 2009/10Brief Profile Proposal for 2009/10presented to thepresented to the

IT Infrastructure Planning CommitteeIT Infrastructure Planning Committee

Alan E Zuckerman MD FAAPAlan E Zuckerman MD FAAPSeptember 15, 2009September 15, 2009

Patient Care Coordination Planning CommitteePatient Care Coordination Planning Committee

The Problem

• Newborn hospital discharge represents the first transfer of care in a person’s 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 yearlife, It is a highly visible event that occurs over 4 million times per year

• The Newborn Screening Use currently under development at HITSP has The Newborn Screening Use currently under development at HITSP has identified this profile as a gap in standards for collecting clinical data needed identified this profile as a gap in standards for collecting clinical data needed for referralsfor referrals

• Because all newborns must be seen within 2 or 3 days of discharge, a 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 summary is required quickly and much of the data can be pre-populated from other sources and then integrate into ambulatory EHRother sources and then integrate into ambulatory EHR

• The proposed profile can build upon several existing profiles for discharge The proposed profile can build upon several existing profiles for discharge summaries and patient summaries, but more importantly, much of the data summaries and patient summaries, but more importantly, much of the data may be capable of pre-population from profiles being developed with ACOG for may be capable of pre-population from profiles being developed with ACOG for prenatal and labour and delivery recordsprenatal and labour and delivery records

• Because some form of newborn discharge summary is required for all infants Because some form of newborn discharge summary is required for all infants there are many non-standard electronic and paper forms in usethere 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 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 use case and current initiatives in long term follow-up of newborn screening will not be able to use this profilescreening will not be able to use this profile

Patient Care Coordination Planning CommitteePatient Care Coordination Planning Committee

Use Case

• The Newborn Screening Use currently under development The Newborn Screening Use currently under development at HITSP has identified this profile as a gap in standards at HITSP has identified this profile as a gap in standards for collecting clinical data needed for referralsfor collecting clinical data needed for referrals

• Long Term Follow-up for infants with conditions detected Long Term Follow-up for infants with conditions detected by Newborn Screening can use this profile for initial data by Newborn Screening can use this profile for initial data collection including capture of relevant information from collection including capture of relevant information from maternal prenatal records and labour and delivery records.maternal prenatal records and labour and delivery records.

• Routine discharge of normal infants can use this profile for Routine discharge of normal infants can use this profile for transfer of care from the hospital to a primary care transfer of care from the hospital to a primary care paediatrician or other providerpaediatrician or other provider

Patient Care Coordination Planning CommitteePatient Care Coordination Planning Committee

Proposed Standards & Systems

• The profile will be based on the HL7 CDA and related CCD and other The profile will be based on the HL7 CDA and related CCD and other discharge summaries. This is necessary to facilitate integration into the discharge summaries. This is necessary to facilitate integration into the newborn screening use case and data transfer from ACOG maternal newborn screening use case and data transfer from ACOG maternal data profilesdata profiles

• Necessary LOINC codes for clinical observations and measures and Necessary LOINC codes for clinical observations and measures and SNOMED codes for diagnoses and key therapies can be developed SNOMED codes for diagnoses and key therapies can be developed with assistance of NLM that launched a Newborn Screening Codes with assistance of NLM that launched a Newborn Screening Codes website on September 15, 2009website on September 15, 2009

• This use case and document was part of the design considerations for 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 the ASTM CCR and thus the HL7 CCD should contain all relevant and necessary sections for this profile except for the physical examination necessary sections for this profile except for the physical examination that is included in other discharge summary profiles to meet JCAHO that is included in other discharge summary profiles to meet JCAHO requirements for hospitals.requirements for hospitals.

• There are no important alternatives to choose betweenThere are no important alternatives to choose between

Patient Care Coordination Planning CommitteePatient Care Coordination Planning Committee

Discussion

• The level of effort should be reasonable due to reuse of previous workThe level of effort should be reasonable due to reuse of previous work• The scope could be constrained to normal newborns in the first year The scope could be constrained to normal newborns in the first year

and expanded to NICU discharges in the second year to narrow the and expanded to NICU discharges in the second year to narrow the scope of workscope of work

• There is significant interest in the American Academy of Pediatrics There is significant interest in the American Academy of Pediatrics (AAP) in participating in this profile and several individuals have been (AAP) in participating in this profile and several individuals have been identifiedidentified– Alan E Zuckerman MD, Georgetown University, aez@georgetown,edu, Alan E Zuckerman MD, Georgetown University, aez@georgetown,edu,

AAP COCIT Exec, CCHIT, a general pediatrician with interest in standards AAP COCIT Exec, CCHIT, a general pediatrician with interest in standards development. Interoperabilty, and newborn screeningdevelopment. Interoperabilty, and newborn screening

– Willa Drumond MD MS, University of Florida, willa@drdrummond.net , AAP Willa Drumond MD MS, University of Florida, willa@drdrummond.net , AAP COCIT, CCHIT, a neonatologist with experience in ICU data systemsCOCIT, CCHIT, a neonatologist with experience in ICU data systems

• There may be interest at HHS/HRSA in the development of this profile 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 because of their interest and mission in long term follow-up of newborn screeningscreening

• Due to lack of existing standards for newborn discharge, collection of a Due to lack of existing standards for newborn discharge, collection of a variety of paper forms would be an important first stepvariety of paper forms would be an important first step