Dear colleagues,
International Journal of Health Governance had just published a new paper on health data governance
Holly, L., Thom, S., Elzemety, M., Murage, B., Mathieson, K. and Iñigo Petralanda, M.I. (2023), "Strengthening health data governance: new equity and rights-based principles", International Journal of Health Governance, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/IJHG-11-2022-0104
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.
Thanks,
Irina Ibragimova,
Co-editor, International Journal of Health Governance
HIFA profile: Irina Ibraghimova is an independent consultant with a PhD. in library sciences and more than 20 years’ international experience in ICT for health projects. She now serves as a Co-editor for the International Journal of Health Governance (Emerald Publishing). Professional interests: Information and health literacy, evidence-based practice, science communication and medical journals editing. http://www.healthconnect-intl.org/ She is a HIFA country representative for Croatia: https://www.hifa.org/support/members/irina
