The Social Data Foundation model: Facilitating health and social care transformation through datatrust services

Abstract

Turning the wealth of health and social data into insights to promote better public health, while enabling more effective personalized care, is critically important for society. In particular, social determinants of health have a significant impact on individual health, well-being, and inequalities in health. However, concerns around accessing and processing such sensitive data, and linking different datasets, involve significant challenges, not least to demonstrate trustworthiness to all stakeholders. Emerging datatrust services provide an opportunity to address key barriers to health and social care data linkage schemes, specifically a loss of control experienced by data providers, including the difficulty to maintain a remote reidentification risk over time, and the challenge of establishing and maintaining a social license. Datatrust services are a sociotechnical evolution that advances databases and data management systems, and brings together stakeholder-sensitive data governance mechanisms with data services to create a trusted research environment. In this article, we explore the requirements for datatrust services, a proposed implementation—the Social Data Foundation, and an illustrative test case. Moving forward, such an approach would help incentivize, accelerate, and join up the sharing of regulated data, and the use of generated outputs safely amongst stakeholders, including healthcare providers, social care providers, researchers, public health authorities, and citizens.

Keywords

• data governance models
• data institutions
• data stewardship
• datatrust services
• healthcare and social care