CONNECTED HEALTH CONFERENCE • Boston, MA • October 25-27, 2017

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2017 Connected Health Conference

October 25-27, 2017 | Boston, MA

Enabling Clinical Oncology Research with Real World Data

How do we gather more high-quality data needed to drive clinical oncology research?  

The Integrating Clinical Trials and Real Word Endpoints (ICARE)data project is testing an innovative approach to do exactly that.  

Today’s gold source of data for oncology research is randomized controlled trials (RCTs).  While this data is high quality, it is insufficient because only approximately 3% of cancer patients in the U.S. enroll in clinical trials.  How does one collect data on these patients after the clinical trial ends?  What about the other 97% of cancer patients?  Their data is contained in electronic health record (EHR) clinical notes which tell the patient’s story but are not structured.


Overall Goal
The overall goal of the ICAREdata project is to enable clinical oncology research by prospectively gathering high-quality real-world data.  The first phase of this project aims to demonstrate a way to collect data from electronic health records that allows patient level comparison with clinical trial data.  
The Innovation: Blend Clinical Notes with Human-readable Structured Phrases
The innovation is to apply a proven technique used in social media, the hashtag, to tag structured phrases in clinical notes.  The clinical notes remain human readable but targeted elements in the clinical notes are structured to support analytics. For example, a clinical note could include a structured phrase like the one below.
Patient reports #toxicity of #grade 1 #nausea attributed to #treatment
As part of this study, an open source infrastructure and data capture methodology are being developed and piloted to capture higher quality EHR-based treatment data, and permit the assessment of 1:1 correlation between randomized controlled trial and real-world data.
Partnering for Success
The ICAREdata project is a collaboration between The MITRE Corporation, the Alliance for Clinical Trials in Oncology, and the Dana-Farber Cancer Institute.  
Learn More
Here’s how you can learn more about the ICAREdata project.
  • Attend the ICAREdata Study Panel Session Friday, Oct 27, 2017 from 12:40 – 1:30 p.m. in room Cityview 2.
  • Join MITRE at the Innovation Lounge Booth IA3

About Mary Pulvermacher

Mary Pulvermacher is a Senior Principal Engineer in the Information Technology Technical Center within The MITRE Corporation.  She is a technical leader with over 30 years of experience defining and developing advanced, customer-focused, information technology systems solutions.  


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