Neil, I note your comments - "Our primary purpose is to champion universal access and strengthen the intrinsic weaknesses — poor communication and coordination, poor understanding, and poor advocacy across the global evidence system — as identified in the Lancet paper."
Health data constitutes one set of evidence. Transformhealthcoalition.org is working to put health data governance onto the agenda of the 77th World health Assembly.
"Strengthening health data governance: new equity and rights-based principles" Louise Holly, Shannon Thom, Mohamed Elzemety, Beatrice Murage, Kirsten Mathieson, Maria Isabel Iñigo Petralanda
International Journal of Health Governance ISSN: 2059-4631Open Access. Article publication date: 8 March 2023.
https://www.emerald.com/insight/search?q=Louise%20Holly
"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"
The study defines the principles on which health data can be effectively and safely processed. It is possible that some of these HDG issues will be discussed at the WHO Patient Safety conference "engaging patients" next month in Geneva.
I am working with a patient and another colleague to create a chatbot which we can share for further discussion and understanding of the requirements for health data evidence gathering and governance.
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data. Email address: richardpeterfitton7 AT gmail.com
