Accessing third-party data for research: trust me? Trust me not?

Area of Science:

• Epidemiology
• Public Health Research
• Health Services Research

Background:

• Epidemiologists frequently evaluate product safety and disease history using data from various sources.
• Research is often sponsored by governmental, non-profit, or for-profit entities with vested interests.
• Administrative and billing data offer rich resources for public health research.

Purpose of the Study:

• To outline a framework for epidemiologists to access and utilize third-party data for research.
• To identify potential pitfalls and provide guiding principles for using administrative data.

Main Methods:

• Review of common practices in epidemiological research.
• Development of five guiding principles for accessing and using third-party data.
• Emphasis on establishing trust and clear agreements with data sponsors and providers.

Main Results:

• Administrative data can reveal disease etiology, prescription drug utilization, and occurrence trends.
• Utilizing third-party data necessitates a collaborative partnership between researchers and data custodians.
• Potential risks include "embarrassment and legal action" if data access and use are not managed properly.

Conclusions:

• Five principles are proposed to guide researchers in accessing third-party data: understand sponsor objectives, identify appropriate data resources, address confidentiality, establish research terms, and set ground rules with data providers.
• Adherence to these principles can facilitate data access and mitigate risks associated with using administrative data for public health research.