A survey of computable biomedical knowledge repositories

Area of Science:

• Digital Health
• Health Informatics
• Biomedical Knowledge Management

Background:

• Shareable computable biomedical knowledge (CBK) repositories are emerging in digital health.
• Trustworthy repositories are vital for learning health systems but lack studied policies and practices.
• Effective sharing and use of CBK artifacts require robust governance.

Purpose of the Study:

• To assess current policies and practices of CBK repositories in the US.
• To identify best practices for developing trustworthy CBK repositories.
• To evaluate adherence to the TRUST principles (Transparency, Responsibility, User Focus, Sustainability, Technology).

Main Methods:

• An online survey of 24 US organizations involved in CBK development or deployment.
• Descriptive statistics applied to data from 13 responding organizations.
• Analysis focused on policies and practices related to the TRUST principles.

Main Results:

• All 13 respondents demonstrated varying degrees of adherence to TRUST principles.
• Transparency, Responsibility, and Technology principles were most commonly addressed.
• User Focus and Sustainability principles were less commonly implemented, with few organizations detailing patient involvement or sustainability plans.

Conclusions:

• Establishing baseline criteria for trustworthiness is essential for CBK repository uptake and safe use.
• Current practices offer insights into desiderata for the evolving CBK ecosystem.
• Further development is needed to enhance user focus and sustainability in CBK repositories.