All Your Data Belongs To Us

[tazdevil]

Side stepping the fact there is no such thing as "the NHS" so it can't own the data, it's the other way round, GP's (who are mostly their own private limited companies rather than partnerships these days) are the primary custodian of patient data, a subset is given to NHS Digital to be held centrally (on the SPINE) so others can access it when permitted.

Things are complicated by the fact you don't have "a medical record", you have a series of potentially dozens of records stored with your GP, your pharmacy, your local mental health trust and of course hospital Patient Administration System, mostly these are linked back to NHS Digital in the Summary Care Records (SCR)

Way back in the 90's they were going to have a central database of patient records and spent billions getting nowhere although there were probably some very happy and rich consultants Perhaps we should be our own database and be chipped with the access code to our records held in encrypted form centrally but needing you to unravel the information block chain That way all the data is available when needed but without ones body the central record is gibberish

[SimonMac]

Information Commissioners - Data protection register - entry details (ico.org.uk)

Which proves my point, NHS England are the commissioners in guess what England only.

The NHS is now divided into a series of organisations that work at a local and national level. The structure of NHS England is as follows:

• The Department for Health is the government department responsible for funding and coming up with policies to do with healthcare in the UK.
• Sustainability and Transformation Partnerships (STPs) bring together NHS providers, commissioners, local authorities and other partners to plan services based on the long-term needs of the local populations. STPs cover areas with populations of 1-3 million people. Integrated care systems (ICSs) are evolving from STPs in some areas, with every part of England set to be covered by an ICS by 2021 under the NHS Long Term Plan. ICSs are a closer collaboration, where organisations take on more responsibility for resources and care of the local population.
• Clinical Commissioning Groups (CCGs) is a group of hospitals and services that cover a geographical area of the UK. They’re responsible for commissioning most NHS services. In 2020, there were 135 CCGs, following a series of mergers. Each group decides which services and treatments are available in their hospitals and choose how secondary care is provided.
• NHS England is the umbrella body that oversees healthcare. It is an independent body, which means that the Department for Health cannot interfere directly with its decisions. It’s responsible for ensuring that there is an effective system of CCGs and must provide support for commissioning. In 2019, NHS England and NHS Improvement were merged, but maintain separate boards.
• NHS Foundation Trusts provide the care that the CCGs commission. They include hospital, ambulance, mental health, social care and primary care services.
• Primary Care is delivered by general practitioners who often work holistically, thinking of a patient in their entirety. Since July 2019, almost all GP practices in England have come together to form about 1,300 primary care networks (PCNs). These cover a population of 30,000-50,000 people and bring general practices together, along with local providers to provide a wide range of professional skills and community services.
• Secondary Care is provided to patients by specialists and healthcare professionals to whom patients are often referred through a GP. It includes both emergency and non-emergency hospital contacts such as A&E, outpatient routine clinics, and mental and maternity health access.
• Tertiary care is provided to patients by specialised doctors and nurses in specialised hospitals, such as a plastic surgery unit. Patients can only access tertiary care if they are referred by a health professional working in secondary care.
• The National Institute for Health and Care Excellence is known as NICE. It regularly evaluates the most up-to-date evidence behind treatments and details what the best approaches are, putting prospective treatments through rigorous analysis and evaluation. CCGs are legally obligated to make funding available for treatments recommended by NICE following publication.
• The Care Quality Commission is an independent monitoring agency, like OFSTED is for schools, that inspects the safety and quality of care in hospitals, general practices, care homes, ambulance services and walk-in centres, then delivers a publicly available evaluation. The CQC reports to the DHSC and aims to improve the quality of healthcare provision across the UK. It publishes ratings of each trust and its services – if services do not meet certain standards, the CQC can issue warnings, restrict services or even prosecute the provider.
• Health Education England is the overseeing body for the lifelong training and education of the NHS workforce, committed to “ensuring that the workforce of today and tomorrow has the right numbers, skills, values and behaviours at the right time and in the right place”.

This is before you even start talking about devolution.

So tell me, which one of those bodies "is" the NHS?

[SimonMac]

Way back in the 90's they were going to have a central database of patient records and spent billions getting nowhere although there were probably some very happy and rich consultants Perhaps we should be our own database and be chipped with the access code to our records held in encrypted form centrally but needing you to unravel the information block chain That way all the data is available when needed but without ones body the central record is gibberish

care.data

That is still a bad word in most parts

[minestrone]

Side stepping the fact there is no such thing as "the NHS" so it can't own the data, it's the other way round, GP's (who are mostly their own private limited companies rather than partnerships these days) are the primary custodian of patient data, a subset is given to NHS Digital to be held centrally (on the SPINE) so others can access it when permitted.

Which proves my point, NHS England are the commissioners in guess what England only.

The NHS is now divided into a series of organisations that work at a local and national level. The structure of NHS England is as follows:

[SimonMac]

Information Commissioners - Data protection register - entry details (ico.org.uk)

/Sigh

Of course there is the concept of a national health service, however saying "It's the NHS's data" is incorrect as the NHS does not exist as a single entity who can be a data owner as per the ICO guidelines

[Lance]

I'm struggling to understand why I should care...
I have no particular medical secrets.
I know my data is worth money, but only as part of a much larger data set so it's not something I can monetise.
I hear things about life insurance, but they will be able to get my information anyway if I need a policy.

So can someone please tell me why I should care? I have downloaded the forms to fill in if it seems worthwhile...

[ladymuck]

I'm struggling to understand why I should care...
I have no particular medical secrets.
I know my data is worth money, but only as part of a much larger data set so it's not something I can monetise.
I hear things about life insurance, but they will be able to get my information anyway if I need a policy.

So can someone please tell me why I should care? I have downloaded the forms to fill in if it seems worthwhile...

If you don't care, that's fine. I have nothing particularly interesting in my medical history but much like the contents of my bank account, browser history, or mobile phone, I don't see why it should be freely available for anyone to poke around in.

[Gibbon]

I should be freely available for anyone to poke around in.

I agree.

[AtW]

The real truth is that they just want an easier way to identify healthy subjects for much needed organs sold to the highest bidder.

You’ve heard it in here first!

[AtW]

I don't see why it should be freely available for anyone to poke around in.

Don’t worry - it won’t be free!