Thus is the very nature of data that it may collect and be collected and accumulate; be stored, archived and gather dust in cupboard and in vault.
Data made a quantum leap as the digital revolution took hold. Data became digital data. Digital data may be stored but becomes readily and immediately searchable, available and accessible.
It has been a step upon step evolutionary process, from GPRD (General Practice Research Datalink) which became CPRD (Clinical Practice Research Datalink) to Care.data, a profoundly revolutionary 'Great Leap Forward'.
The Handling of NHS patient data Inquiry reported -
Professor Mathers: Care.data itself provides a fantastic opportunity for research. That is one reason why we think the benefits outweigh the risks, provided they are properly managed, for improving patient care. The linking of the datasets between the hospital episodes and care within the practice is where the real power lies in the programme.They want your data for Big Data. Your data online is not a facility of convenience for you to access your records, but their Data for them to use for research.
Valerie Vaz: My concern is exactly what you have just mentioned: it saves clinical trials. I just wonder whether we are in the process of getting a massive amount of information about the population to save drug companies from doing their clinical trials and work. Some population studies have been going on, have they not? My question is: if someone has an idea for a piece of research, what is wrong with identifying, via GPs or different areas, which they must have done before, those patients and asking their permission? You will find that patients probably would like to help further research. It seems to me you have a massive amount of information about people, which you really do not need to have, that means people can dip in and dip out. I am hoping you will tell me that there is an opportunity for patients to know what information about them has been passed on.
Nicola Perrin: I think there are two slightly different issues within that. You can ask very different questions if you are looking at real-world effects in the population. Of course, there are examples where you can do it on a small scale and ask every individual patient, but you will not be eliminating clinical trials. This is not about novel drugs before they have been approved; it is looking at the effects of drugs that are already being prescribed and picking up side effects which would not otherwise be seen if you were looking at just a small population. It makes it that much easier. Because one can look at large numbers, the costs and resource implications of asking everybody separately to consent would be huge, and would reduce the amount of research that could be done. You also end up with that sort of opt‑in process. You will often have a skewed dataset which can lead to an unhelpful and potentially dangerous bias. You will have some groups that are much more reluctant to give consent and they are missing from the dataset. Therefore, population-level data are of the most value to get the best possible answers from the research.
The "costs and resource implications of asking everybody separately to consent would be huge" and so consent is assumed in an opt out process.
This is a "fantastic opportunity".
This is not a land grab; this is a data grab.
The data grab is part of Everyone Counts, a programme to extend the availability of patient data across the Health Service.
Valerie Vaz is concerned that Big Data "saves clinical trials" and is a cost cutting exercise to "save drug companies from doing their clinical trials and work"
But according to the NHS England Business Plan for 2013/14 – 2015/16...
A 'teaching hospital' is a hospital affiliated to a university. And lo, they are all become 'associated university hospitals'. The business plan is being rolled out.
This is Big Government that presumes consent and enacts policies of negative rights.
Big Data can target trials.
NHS patients are subject fodder for research.
They can ‘dip in and dip out’.
And once it’s ‘okay’ it’s okay; the spread is incremental and, notch and by notch, they raise their banner high.
Slip comes to slide and creep comes to spread and necessity is the justification of reason.
That is plain and simple, fundamentalist Communitarian logic. Just ask Sunstein.
Data is used. It is justified; it is for a greater good.
Data has been abused...
From the GP Online -
Pharmacy2U, which holds the largest NHS pharmacy contract inPut simply, Pharmacy2U is a respected and reputable company. EMIS Group, the parent company is a leading provider of clinical software systems, a player in the development of the EPS. Data will be used if it can be shown to be justified. After all...
, operates through the NHS electronic prescription service (EPS). The company receives digitally signed prescription information requested by patients from GPs via the EPS. The firm says it has been instrumental in developing the EPS, working with the NHS since 2001. England
The name and address details sold were supplied by customers themselves when they registered to use the pharmacy's services online, the company said.
The ICO ruling found that names and addresses sold included NHS patients using the electronic prescription service as well as Pharmacy2U's online patients and retail customers.
Data is Power, Mr. Bond...
Back in February David Davis, the libertarian Tory MP, challenged health minister Dan Poulter.
He confirmed that police pursuing serious crime will have “backdoor” access - which was Mr Snowden’s complaint about spy agency dealings with Google - to the NHS’s new arm’s length database, even the records of patients who have opted out. Previously they would have had to trace a suspect’s GP.
- HSJNecessity is the justification of reason.
Ask them their three main priorities, Number Six, and they will tell you: information, information, information.
ALECs (Arms Length External Companies) have been discussed in these pages. For instance –
Here's a tale of another bunch of smart alecs...
From the BMJ (British Medical Journal) -
An investigation into
’s clinical commissioning groups shows that many are commissioning from organisations in which board members are involved, Gareth Iacobucci reports. England
Clinical commissioning groups (CCGs) in
have awarded hundreds of contracts worth at least £2.4bn (€3.4bn; $3.7bn) to organisations in which their board members have a financial interest, a joint investigation by The BMJ and The Times has found. England
This new analysis shows the extent to which CCG boards have become conflicted under the health reforms introduced in 2012, which handed general practitioners control of around two thirds of the NHS’s total budget.
Well, well, well...
|- Mail Online|
Clinical Commissioning Groups (CCGs), which have responsibility for spending 60 per cent of the NHS budget, have raised concerns because doctors can effectively pay themselves for clinical services.There were a total of 437 contracts awarded by preference...
Lines become blurred and demarcation becomes ill-defined. Public funding is become public sleaze and Cronyism. CCGs treat their income as their own when it is not: monies are held in trust.
Local Authorities are now responsible for public health and CCGs work closely with them through Health and Wellbeing Boards to achieve the “best possible outcome for the local community, by developing a joint needs assessment and strategy for improving public health” (NHS Clinical Commissioners).
LATCs (Local Authority Trading Companies) have also taken off. Smart Alecs are setting up LATCs up and down the country.
This is 'partnership working'. Slip is come to slide and creep is come to spread and necessity is the justification of reason.
Where will all this lead? Are these the makings of the Corporate State...?
It is all for our benefit, citizen.
Are we but not one of many numbers and is not Big Government the Benefactor?
What then may we fear? Will you not trust God with your life; but will you trust your kind with your Data...?
Further reading -
Liverpool Care Pathway - Data Is PowerLast word...
Liverpool Care Pathway - Threshing The Data
Liverpool Care Pathway - Fracking The Data
Liverpool Care Pathway - Of CQuINs, Tipping Points And QUELCAs
Liverpool Care Pathway - Still Playing Games Of Consequences
Liverpool Care Pathway - Trials And Rumours Of Trials
Liverpool Care Pathway - A Data Bonanza
Liverpool Care Pathway - Still Playing Games Of Consequences
Liverpool Care Pathway - Be Not Disarmed By The Caring Smile
Liverpool Care Pathway - The Communitarian Nudge
Liverpool Care Pathway - Murder On The NHS Express
Back in June, Professor Martin Severs, Professional Lead and Caldicott Guardian, HSCIC wrote a letter to the Editor of the Daily Telegraph complaining of inaccuracies in the paper’s report -
We have been working with medical, legal, policy and technological experts to design a robust system that will implement these objections in a way that will not harm anyone’s direct care. This needs to be done carefully; as a clinician I have taken an oath to do no harm and I am determined to get this right.No-one will doubt the good Professor’s integrity, but there are more powerful forces at play than he.
The information is out of the vault, they are planning out of the box and the Devil will pave the streets with souls.