[Re: https://www.hifa.org/dgroups-rss/devex-what-are-some-most-underreported-... ]
Concerning global health governance:
A small group of personal health data/ records enthusiasts presented a one hour workshop "the case for a UN supported global personal health data processing governance standard for governments, public and private corporations, health service providers, tech companies, proxy citizens and citizens." at the 2023 UN World Data Forum (UNWDF) in Hangzhou, China, in 2023.
(TA2.02) Inclusion of the citizen, children, families, disabled persons and primary care team in ...
<https://www.youtube.com/watch?v=A4fj-PilyZ0&list=PLBc4lThqX-WObz0EEdQkWF...
Data is an abstraction and representation of a fact. Information is data presented to a person or system in a form that informs the recipient of or about the data. Knowledge is the ownership of two or more pieces of information about a fact/data. Understanding is the product of the application and experience of the use of one or more pieces of knowledge to study or deal with facts/data. Wisdom is the accumulation of knowledge and understanding of the data in question. Increasingly systems are supplying patients and
citizens with all of these parameters of their personal health data, including their data and education about their data when they are in hospital.
Personal health data is necessary for managing immediate and continuing clinical care, for administering public health and research, and for financing health. However, personal health data has a social context beyond the provision of healthcare both to the patient/subject of the health data, and to the providers of healthcare. The personnel who provide care may have a social or personal relationship with the patient. Information governance deals with the dynamics of personal health data, information, knowledge, understanding and wisdom. Details about chest infections, broken bones, heart disease have less social stigma or negative social relevance as sexual health, gender assignment, pregnancy management and mental health.
It has been our contention for some time that patients should have the access to their data to be able to see what has been recorded about them and to indicate which "sensitive data" they do not wish to be shared beyond the legal provision of the service provider (WHO Patient Safety Charter 2024 Patient Right number 8).
We also wish the UNWDF to support the standard of personal health data/information governance including the right of patients/citizens to have copies of or access to the personal health data/information that is stored about them.
We hope to present these issues again to the 6th UNWDF in Riyadh in November 2026.
R
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