Charles Bailey, MD, PhD, Pediatric Oncologist and Assistant Professor, Children’s Hospital of Philadelphia spoke today at the 3rd Annual Clinical Informatics Symposium presented by St. Louis Children’s Hospital and Washington University in St. Louis. His presentation was focused on using the EHR as a building block for a learning health system.
Through the power of collaboration, the vision of a learning health system is about leading healthcare and health to “big data” to empower all stakeholders in healthcare to “learn large”. It is critical for all stakeholders in the health care system participate in the learning health system vision.
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One example of a learning health system that is having an enormous impact on children’s lives is PEDSnet. PEDSnet is a national, pediatric-specific learning health system (LHS). This multi-institutional clinical data research network (CDRN) represents 4% of the children in the U.S. and is composed of 8 of the largest children’s hospitals across the nation:
- Children’s Hospital of Philadelphia
- Cincinnati Children’s Hospital Medical Center
- Children’s Hospital Colorado
- Nemours Children’s Health System
- Nationwide Children’s Hospital
- St. Louis Children’s Hospital
- Seattle Children’s Hospital
- Boston Children’s Hospital
An LHS is organized around communities of patients, families, clinicians, and researchers who work together to purposefully integrate knowledge generation (research) with knowledge dissemination and implementation at the point of care (quality improvement). Its goal is to provide information about available, reasonable alternatives that will allow patients and families to make informed, shared decisions with their healthcare team in ways that lead to improvements in outcomes.
The EHR is a key building block for PEDSnet and here is why:
- Broad representation of population
- Source of clinical truth
- Incorporates multiple types of primary data
- Includes clinicians’ evaluations (increasingly patients)
- Potential for efficient point-of-care collection of research-quality data
While the EHR is a building block there are clear challenges that need to be addressed:
- Clinical care, not research, is the driving workflow
- Significant unstructured data
- Adoption skewed towards large centers
- Limited flexibility, with focus on static recording
- Technical barriers: data model variation, user interface
Dr. Bailey concluded his presentation with a slide titled EHR 4 LHS in which he summarized the keys to leveraging an EHR for a learning health system:
- Understand and use the primary data you collect
- Use terminology intelligently
- Embrace the real world
- Encourage collaborative work – including patients
3rd Annual Clinical Informatics Symposium, St. Louis, MO, October 2015