All citizens are of the same species, have the same genomics, anatomy, biochemistry, and physiology, despite national, cultural and geopolitical differences.
With some local disease variation, citizens subject to the same life cycles and diseases. SNOMED CT is being coded to standardize aspects of traditional medicine, with ongoing work to integrate concepts from other systems like ICD-11-CH26 into SNOMED CT for concepts related to Traditional Chinese Medicine and other traditional practices. do snome codes code traditional medicine - Google Search.)
As a patient wrote before data does have ‘value’ - but to the owners of that data only if it is used for their benefit. If merely ’sold’, the value will be perceived as going to the acquirer. And likely with good reason. Corporate profits up; health outcomes down. Everyone has a stake - so maybe everyone should be an owner with 100% public ownership. What is the structure to best support the Government's needs to support health data processing? What structures with members of experience and competence should be put in place to oversee and support health data processing?
“What body represents the patients? The ‘body’ needs to be led by someone with high integrity who can relate to both The Big Four tech companies and the Public, and able to lead the politicians in cross-party politics to get firstly acceptance and then ‘value’ from what has to be an incredible opportunity. The body should be able to report to, and communicate with the public in their ‘frames of reference’ - i.e. what matters to the public. The body should have other ‘members’ chosen for their expertise and integrity - people with a willingness to put the health of the country way ahead of the health of their personal bank account. Reports and extracts over recent years suggest that enough progress has been made on recognising and understanding how to manage confidentiality issues.
We will try to cover global personal health data governance at the UN World Data Forum in Riyadh, Saudi-Arabia in November if our submission to present is accepted. The completion of the Human Genome Project in 2003 confirmed humans are 99.9% identical at the DNA level. Race and genetics versus ‘race’ in genetics: A systematic review of the use of African ancestry in genetic studies - PMC https://pmc.ncbi.nlm.nih.gov/articles/PMC8604262/
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