PEDSNet Organization Sponsor/s: PEDSNet Presenter Name: Mark Del Beccaro Purpose: - What is PEDSNet - Who are participating organizations Status: - Organization - Pilot projects Whats Next:- Factors for success Of Note:- HL7 Child Health Work Group relevance

PEDSNet Purpose: What is PEDSNet The Pediatric EHR Data Sharing Network (PEDSNet) is a consortium of academic health centers that have agreed to share electronic health record and related clinical data for the purposes of transforming childrens healthcare. The network was launched on October 15, 2009 at a meeting held at the Institute of Medicine (IOM), which has facilitated the development of PEDSNet.

PEDSNet Purpose: What is PEDSNet Specific Near Term Objectives To examine the institutional resources required to map data from the specific EHR or clinical data warehouse in use at that institution into a common data format suitable for network use. To assess pragmatic institutional factors, such as research focus, resource prioritization, and informatics infrastructure, that impact ability to participate in PEDSNet. To determine the specific challenges encountered in mapping a small set of discrete clinical elements from care-centered information systems into datasets amenable to research analyses.

PEDSNet Organizational Structure: Chair: Chris Forrest, MD, PhD Childrens Hospital Philadelphia Vice Chair: Mark Del Beccaro, MD Seattle Childrens Hospital Technical Workgroup Chair, Michael Kahn Denver Childrens Hospital Executive Workgroup Members: Robert Warren, MD, PhD, MPH Texas Childrens Hospital David Milov, MD, Neumors Childrens Hospital Mort Wasserman, MD University of Vermont Kelly Kelleher, MD, MPH Nationwide Childrens Hospital

PEDSNet PEDSNet Participating Institutions (Site Investigators) include: Alabama Childrens Health System (Pele Yu, Tony Fargason) Childrens Hospital at Dartmouth (Paul Merguerian, Sam Casella) Childrens Hospital at Vanderbilt (Kevin Johnson, Michael Warren) Childrens Hospital of Boston (Ken Mandl, Marc Natter) Childrens Hospital-Denver (Dan Hyman, Michael Kahn) Childrens Hospital of Los Angeles (Christy Beaudin, Sajjad Yacoob) Childrens Hospital of Philadelphia (Chris Forrest, Charlie Bailey) Childrens Hospital of Wisconsin (Ramesh Sachdeva, Carl Weigle) Cincinnati Childrens Hospital Medical Center (Peter Margolis, Uma Kotagal) C.S. Mott Childrens Hospital (Matt Niedner, Vinita Bahl) Johns Hopkins Childrens Center (Chris Lehmann, Marlene Miller) Nationwide Childrens Hospital (Kelly Kelleher, Philip Payne) Nemours Childrens Healthcare System (David Milov, Duane Steward) New York Presbyterian/Cornell and Columbia (Rainu Kaushal, Susan Bostwick) Primary Childrens Medical Center ([Joe Hales is contact.]) Seattle Childrens Hospital (Mark Del Beccaro, Dimitri Christakis) Texas Childrens Hospital (Bob Warren, Curt Kennedy) University of Chicago/Comer Childrens Hospital (Eneida Mendonca, John Cunningham)

PEDSNet PEDSNet Consultants include: Aileen Sedman (University of Michigan/NACHRI) R. Mort Wasserman (University of Vermont) Sharon Murphy (Institute of Medicine, National Academy of Sciences)

PEDSNet Status: Organization Met at IOM Twice Numerous workgroup virtual meetings Technical/Informatics Governance Science/Finance Draft of Bylaws in process Agreed on pilot project Working on grant submission

PEDSNet Status: Pilot project – Obesity/BMI and Hypertension To examine the institutional and regional differences in body mass index, overweight, and obesity across the pediatric populations at participating institutions. To compare the distribution of weight, height, and body mass index obtained from combined EHR data with the summarized national data provided in the 2000 NHANES dataset.

PEDSNet Status: Pilot project – Obesity/BMI and Hypertension To determine the relationship between body mass index and systolic or diastolic hypertension in the pediatric population, and compare results to the benchmark single-measurement Sorof data. To assess the frequency with which the diagnoses of obesity and hypertension are made in children with vital signs indicative of these diagnoses

PEDSNet Status: Grant Application Responding to a federal grant proposal An important first step to establishing a federated infrastructure for inter-institutional collection and sharing of electronic data is to link sub-specialty networks and multi- purpose pediatric disease registries that have already reached a reasonable level of maturity to form a common clinical informatics spine. At the end of the three-year project period, we will have demonstrated the feasibility of using a distributed pediatric health data network for conducting CE research on children with chronic disease, and created a sustainable governance structure to support the long-term growth and development of the network.

PEDSNet Whats Next: Factors for success Pilot Project Demonstration – can it be done Grant Application – can we attract $$ Institutional and Investigator buy in Build it and they will come

PEDSNet Of Note: HL7 Child Health Work Group relevance Quality Outcomes research will help drive evolution of standards Data entry, storage, transmission, etc