Innovative Solutions for Clinical Trial Follow-up: Adding Value from Nationally Held UK Data

Area of Science:

• Oncology
• Health Informatics
• Clinical Trials

Background:

• Clinical trials are foundational to evidence-based cancer care.
• Trials offer opportunities for extensive data collection beyond primary outcomes.
• Nationally held health data can support prolonged patient follow-up.

Purpose of the Study:

• To review available national data for clinical trial use.
• To explore current and potential applications of linked data for non-cancer outcomes.
• To identify challenges in data acquisition and utilization.

Main Methods:

• Review of existing national datasets, including hospital episode statistics, chemotherapy and radiotherapy data, and primary care records.
• Examination of the National Cancer Data Repository for linked patient data.
• Analysis of ethical, legal, and information governance challenges.

Main Results:

• National datasets offer rich resources for long-term follow-up and toxicity assessment.
• The National Cancer Data Repository links diverse data sources for cancer patients.
• Data access is hindered by ethical, legal, and time-consuming information governance processes.

Conclusions:

• Linked national data hold significant potential for cancer research, especially for non-cancer outcomes.
• Overcoming data access barriers is crucial for maximizing the utility of these resources.
• Future research should focus on leveraging integrated datasets for comprehensive patient outcome analysis.