The Challenges of Collecting and Using Patient Care Data From Diverse Care Systems: Lessons From COMPASS.

Area of Science:

• Health Services Research
• Clinical Informatics
• Health Data Management

Background:

• National necessity for aggregating clinical data across diverse organizations for performance measurement, quality improvement, evaluation, and research.
• Limited examples and practical guidance exist for implementing such large-scale data aggregation initiatives.

Purpose of the Study:

• To identify challenges and provide experience-based recommendations for aggregating clinical data across multiple organizations.
• To leverage lessons learned from a national collaborative care management model implementation.

Main Methods:

• Analysis of a national initiative implementing collaborative care for depression and comorbid diabetes or heart disease.
• Involved 8 partner organizations, 18 medical groups, and over 170 clinics across 8 states.
• Categorized challenges into data collection, aggregation across care systems, and data utilization for improvement and evaluation.

Main Results:

• Key challenges identified in collecting similar data, aggregating data across disparate care systems, and using data for care improvement and evaluation.
• Recommendations emphasize initial agreement on goals, methods, and transparency.
• Importance of an integrated data system within the electronic medical record and prompt attention to legal/regulatory requirements.

Conclusions:

• Successful clinical data aggregation requires a strategic approach addressing data collection, integration, and utilization.
• Establishing clear goals, transparent methods, and robust data systems are critical for effective multi-organizational data sharing.
• Addressing legal, regulatory, and human subject considerations early is essential for project success.