Thursday, February 20, 2014

Was The DoH Cunning Or Not With The Design Of The PCEHR? The U.K. Seems To Have Got Itself Into A Bit Of A Mess.

This appeared a day or so ago.

'Big Brother' database will grab children's health records but parents are being kept in the dark

Leaflets about the scheme don't say children's records will be harvested

Doctor fears the data grab will 'undermine trust' in the medical profession

Children's medical records will be automatically uploaded to the controversial new ‘Big Brother’ NHS database – but parents have not been told.
The records of some ten million youngsters in England will be taken from GP surgery computers this spring to be part of the project.
Leaflets about the scheme contain no mention that children’s records will be ‘extracted’. It is only revealed in NHS guides for patients and GPs on the internet.
Last night MPs and doctors said it was ‘highly irresponsible’ not to specify that children’s information would be uploaded.
More here:
You can read the back story to this story here: a row waiting to happen

NHS England has sent directions to the Health and Social Care Information Centre to start collecting and linking primary care data to Hospital Episode Statistics. EHI news editor Rebecca Todd takes a look back at the creation of the programme and the concerns many have about its implications for patient privacy.
30 January 2014
Clever use of data can help the NHS make better decisions about planning services and reducing waste, as well as devising new treatments with a direct effect on patient care.
The real 'scandal' of data use, some would argue, is the chronic underuse of the wealth of patient data locked up in various systems in order to benefit the health system as a whole.
NHS England wants to create a new national database of identifiable patient data pulled from hospitals, GPs, social care, community care and other areas. This will be stored in the ‘safe haven’ of the Health and Social Care Information Centre, where it will be linked to create new Care Episode Statistics.
NHS England says this new data set will help to determine where the NHS needs to invest and to highlight where excellent care is being delivered and where there may be local problems.
However, the information held in will not just be available to the NHS. Identifiable data – what the programme calls ‘red’ data – will be released under “civil emergencies” legislation and Section 251 orders from the health secretary.
Some partially anonymised data – ‘amber’ data – will be released to any organisation that wants to use it for the benefit of patients, including universities and private companies. And some large datasets – ‘green’ data will be published.
It’s the amber data that has caused most controversy to date. Data will be pseudonymised – or have some of its identifiers replaced with placeholders called ‘pseudonyms’ - before release.
But there is a risk that it could be re-identified if combined with other datasets in a technique known as a ‘jigsaw attack’; although the proponents of the programme say this will not happen, because contracts with researchers will ban it.
NHS England chief data officer Geraint Lewis argues that the emphasis should be on what applicants want to use the data for, and not on making moral judgements about who these applicants happen to be.
However, others see a very clear distinction between the idea of patient data being used by the NHS and it being used by others, even if those operating “in the public interest” or working “for the benefit of patients.”
Others are simply nervous about the creation of a massive central database of identifiable patient information and the consequential risk of their data being lost, leaked or released to organisations which already hold significant amounts of data on England’s citizens.
A scandal erupts
An increasingly strident campaign against is now underway, partly because NHS England and other national bodies have done a poor job of making the case for the programme to clinicians, patients, privacy campaigners, and others.
The idea of seems to have first appeared in print in NHS England’s initial planning guidance for the health service in December 2012. However, the fact that a large new GP dataset was to be “requested” from practices came out of the blue for joint chairman of the BMA and RCGP's joint IT committee, Dr Paul Cundy.
The committee quickly requested a meeting with NHS England’s national director of patients and information, Tim Kelsey.
This appears to be the first time the national commissioning board engaged with this key GP group about the proposals, even though GPs are the data controllers for the information they hold; and so are responsible for making sure patients are informed about the use that is being made of it.
Eventually, a publicity campaign and an opportunity for patients to opt-out was agreed. But the £1m leaflet drop that is now underway as part of the campaign has been severely criticised for failing to adequately explain what is planned (it does not even mention by name) and for not including an opt-out form.
This is particularly surprising considering the uproar that derailed the NHS Summary Care Record programme for many years.
The SCR was another 'good idea' that involved extracting a key clinical dataset from GP practices to be held on the national data Spine, from where it could be viewed by staff treating patients who otherwise had no medical records with them.
However, the SCR was seen as a top-down dictate, a part of the National Programme for IT in the NHS that wanted to create the first, national database of patient records, for limited clinical benefit. Consequently, it became engulfed in a row about whether patients should be able to opt in or opt out that it is only just starting to recover from.
There is a lot more here:
As I read about all this annoyance in the UK it occurred to me that the PCEHR was aiming to build a similar database - probably over a longer time period by having the doctors upload the information voluntarily for their patients.
One way or another both Governments are trying to get a large population data-base to data mine but I suspect the previous Government was pretty cunning is saying ours was was personally controlled while having the same objective and avoiding the opt-out approach now being used - very controversially - in the UK.
Very cunning indeed politically but unless PCEHR adoption gets a lot better the UK will win the race to having a useable database.
Nothing is ever easy in all this.


Ian McNicoll said...

Hi David,

This new '' scheme needs some clarification, as it is absolutely not analagous to PCEHR. was intended as a buik extract of a subset of GP data (alongside existing hospital data) for secondary uses purposes only. It is not intended to act as a primary record for operational use and other than in exceptional circumstances will only be available in anonymised or aggregated form. It has just been delayed because of significant concerns about patient consent.

The English Summary Care Record is closer to the PCEHR in content and intent, but is only populated from GP systems.

Locally in the UK there are a multiplicity of regional detailed care records which are more like PCEHR, taking multiple feeds from different providers.

So England is no closer to a single patient record (and probably will never go in that direction) although there is some Scottish interest in establishing a single community medication / allergies record.


Dr David More MB PhD FACHI said...

Hi Ian,

You missed my point. I strongly and with good reason suspect the Aust. Government is planning to data mine the PCEHR - but not even disclose it plans to - as the UK government is doing with the extract data.

The SCR is of different intent - that of essentially a summary record for use until fuller information can be found. The PCEHR fantasizes it can be all things to everyone - which is rubbish!