White Papers
Published: 17 January 2020

APPA – Authorized Public Purpose Access: Building Trust into Data Flows for Well-being and Innovation

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This White Paper proposes an approach to data governance that prioritizes value creation, in particular, value creation that benefits a broad range of stakeholders including society as a whole. The authors focus on healthcare data and the challenges involved in using data to improve outcomes for people with dementia and other aging-related diseases—including detection, prevention, treatment, and wellbeing-maximization. They begin by examining existing data-governance models, and find that most models are biased toward the interests of one of three major stakeholder groups—individual data subjects, technology companies, and other data holders, or governments (whose interests may or may not align with those of their citizens). They propose a more balanced governance model called Authorized Public Purpose Access (APPA), designed to maximize the socially beneficial potential of data while protecting individual rights such as privacy and the legitimate interests of data holders.

This White Paper proposes an approach to data governance that prioritizes value creation, in particular, value creation that benefits a broad range of stakeholders including society as a whole. The authors focus on healthcare data and the challenges involved in using data to improve outcomes for people with dementia and other aging-related diseases—including detection, prevention, treatment, and wellbeing-maximization. They begin by examining existing data-governance models, and find that most models are biased toward the interests of one of three major stakeholder groups—individual data subjects, technology companies, and other data holders, or governments (whose interests may or may not align with those of their citizens). They propose a more balanced governance model called Authorized Public Purpose Access (APPA), designed to maximize the socially beneficial potential of data while protecting individual rights such as privacy and the legitimate interests of data holders.

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