Strengthening health data governance : new equity and rights-based principles

Abstract

Abstract: Purpose – This paper introduces a new set of equity and rights-based principles for health data governance (HDG) and makes the case for their adoption into global, regional and national policy and practice. Design/methodology/approach – This paper discusses the need for a unified approach to HDG that maximises the value of data for whole populations. It describes the unique process employed to develop a set of HDG principles. The paper highlights lessons learned from the principle development process and proposes steps to incorporate them into data governance policies and practice. Findings – More than 200 individuals from 130 organisations contributed to the development of the HDG principles, which are clustered around three interconnected objectives of protecting people, promoting health value and prioritising equity. The principles build on existing norms and guidelines by bringing a human rights and equity lens to HDG. Practical implications – The principles offer a strong vision for HDG that reaps the public good benefits of health data whilst safeguarding individual rights. They can be used by governments and other actors as a guide for the equitable collection and use of health data. The inclusive model used to develop the principles can be replicated to strengthen future data governance approaches. Originality/value – The article describes the first bottom-up effort to develop a set of principles for HDG.