Project Overview

Problem:

• Clinical data is stored in disparate systems that use multiple data storage formats. Dispersed cancer treatment sites reporting to a centralized cancer registry presents many challenges for data aggregation.
• Data collection and aggregation puts a high burden on both reporters and data registries. Reporting sites convey critical patient information using designated forms that require largely manual processes to complete, and each site has unique processes for clinical data collection.
• Variability in patient data collection processes negatively impacts overall understanding of patient care. Heterogeneity of data collection makes it difficult to aggregate and share data for use in improving clinical research and standards of care.

Description: 

• A patient diagnosed with cancer. That patient begins therapy, and though a set of extended mCODE elements that patient’s status is tracked. As that patient’s therapy progresses, outcomes are tracked, and effectiveness of care is determined in real time. All this information is reported from the clinical site to the designated cancer registry, in a low-burden and semantically interoperable way. Connecting patient status, response, and disease progress provides greater insights into standards of care provided. 

Target Outcome:

• Enable low-burden, standardized reporting of cancer data from cancer centers to registries that are aggregating data for different reasons.

• Consider use of mCODE^TM and extensions for registry reporting to assess cross-center standards of care. Other potential scenarios could expand scope to support population health, clinical trials, post-market surveillance, quality reporting, comparative effectiveness and more.

Value: 

• Reporting sites with cancer patients can seamlessly and easily transmit patient data to cancer registries with greater insights into standards of care for patients, improving care understanding and practice.

Project Plan