Health records support genetics research at Children's Hospital of Philadelphia

Michael Italia on making use of data collected in health care settings.

Michael Italia leads a team of programmers and scientists at Children’s Hospital of Philadelphia (CHOP), Center for Biomedical Informatics, where they develop applications, data repositories, and web interfaces to support CHOP’s leading roles in both treatment and research. Recently we recorded an interview discussing the collection of data at CHOP and its use to improve both care and long-term research.

Italia, who will speak on this topic at OSCON, describes how the informatics staff derived structured data from electronic health record (EHR) forms developed by audiologists to support both research and clinical care. He describes the custom web interface that makes data available to researchers and discusses the exciting potential of genomic sequencing to improve care. He also lists tools used to collect and display data, many of which are open source.

Particular topics in this video include:

  • The relationship between clinical care and research at Children’s. [Discussed at the 00:22 mark]
  • The value of research using clinical data. [Discussed at the 02:30 mark]
  • The challenge of getting good data from health records. [Discussed at the 03:30 mark]
  • Tools for capturing, exporting, and displaying data. [Discussed at the 05:41 mark]
  • Making data useful to clinicians through a simple, modular web interface; tools used. [Discussed at the 12:07 mark]
  • Size of the database and user cohort. [Discussed at the 17:19 mark]
  • The ethical and technical issues of genome sequencing in medical treatment; benefits of sequencing. [Discussed at the 18:23 mark]
  • “Pick out the signal from the noise”: integrating genetic information into the electronic health record and “actionable information”. [Discussed at the 24:27 mark]

You can view the entire conversation in the following video:

OSCON 2012 Health Care Track — The conjunction of open source and open data with health technology promises to improve creaking infrastructure and give greater control and engagement to patients. Learn more at OSCON 2012, being held July 16-20 in Portland, Oregon.

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