The UK government is to review the controversial Summary Care Record scheme which aimed to put a basic health record for every citizen onto a central spine. The project assumed consent and patients who did not want their records added were required to write to their GP. Health minister Simon Burns wrote to the Local Medical …
I hand delivered my opt-out form to my surgery today.
I see the value of a central record, in principle, but in practice it will be available to any crook who wants to buy it from day one. In 5 years time the government will be actively selling it.
The nu-lot may eventually scrap this scheme, but I remember Cameron suggesting that Google could provide the service at a lower cost.
We need to keep an eye on them!
Here is the previous on Cameron ...
Watch them like hawks.
The GP representatives voted for the following:
(i) believes that patients who wish their Summary Care Record to be uploaded centrally should be asked to give explicit consent to this
(ii) demands that general practitioners are appropriately funded to undertake the work generated in their practices by the Summary Care Record programme
(iii) considers that the BMA should formally and publicly abandon its acceptance of an 'opt-out' system
(iv) asks the BMA to explore the withdrawal of all co-operation with a system based on implied consent
The abandonment of the SCR will no doubt be reviewed after publication of the forthcoming UCL report.
I phoned to ask why the opt out form was not in the info pack I received. The phonedrone said "we did a risk assessment and we found that most people would fill it in and send it back to us."
The SCR absolutely must be made explicit opt - in only.
Opt -in needs to be the default for all personal data collection and storage by any organisation for whatever reason.
It would be absolutely wonderful for healthcare personnel to have easy access to health records where and when needed, under all circumstances, and there will be exactly no access when not needed, safeguarding privacy. Eventually, hopefully, we'll have such a system.
This summary care record system, however, is not it.
I can tell by many signs on the wall. It's clumsily done, it's being forced through despite strong indications it's not good enough, it's opt-out, it's immature technology, and most damning of all: There is no suitable ID-and-records infrastructure to make it happen. In short, it's the basic computerisation of a two century old system, without regards whatsoever for the needs and caveats of using modern technology.
This is much the same problem that hampered the ID cards database, that's the problem with the child records, and that is a basic flaw behind the vetting database -- quite apart from the fact that the latter is merely a state-run rumours mill with the power to put people out of a job indefinitely.
This very basic problem is not limited to Britain. Every nation that's busy rolling out databases so far has proven to be completely unimaginative about it, with the possible exception of China *gasp*. China requires all citizens to have an ID card, but if you send a text message with name and card number to a magic inquiries number, you get back a picture message with the photo that's supposed to be on the card. Though I find making the plastic more important than the person (which all current governments are doind) highly objectionable, this picture service is at least useful to the average citizen. Sadly, providing useful services to people, that is a concept completely foreign to governments.
I wouldn't recommend trying to emulate China, but I would like a better identity system, and for that we need a better --less medieval-- concept of what identity is, and with that, we will have to redefine how governments and people trying to do business with each other deal with the concept.
Most of these changes stem from moving most of our transactions into the digital realm, which quite harshly exposes weaknesses in systems originally invented for the physical paper based world. Instead of trying to let our hopelessly outdated and outclassed governments deal with it for us, we need to think about it ourselves. And we need to get moving quickly, before the bodges the governments are coming up with are too large and expensive to replace. We must, because it's a vital bit of infrastructure and without it we can't move forward with renewing the governing infrastructure for the digital age. Or we'll be stuck with identity systems, care and other records systems, databases, that contain ever more and ever more intimate data (biometrics, behavioural analysis, and worse), that are leakier than a wide open database full of credit card numbers.
Opt-out opts you in to being recorded
Putting the burden on opt-out means that they get to hold a record of you - at minimum that you opted out of wanting your information stored... Very Catch 22.
Whereas for opt-in, it would be relatively trivial to incorporate proof that you opted-in, and anyone who doesn't want to be tagged, bagged and commercialised could go their merry way without anything needed to be recorded.
out ages ago.
No matter what "they" say, no doctor is going to use the SCR to treat you without personally asking you, or a close relative, what your medical history is. The horrific consequences of wrongly-entered blood group information means the data will never be accepted as correct.
The only real value of the SCR is as a one-stop-shop to access your information for the use of the public services as a whole.
YOU CAN'T OPT OUT OF DETAILED RECORDS!
"The UK government is to review the controversial Summary Care Record scheme which aimed to put a basic health record for every citizen onto a central spine."
And what about Detailed Records?
Yet again, no mention of them, as if they don't exist.
Yet again, the misconception that Summary Care Records is the whole scheme is reinforced.
Yet again, people will mistakenly think that opting out of Summary Care Records means opting out entirely, when it doesn't.
The previous government have obviously been very successful in duping journalists - including here at El Reg - into reinforcing this deception.
YOU CAN'T OPT OUT OF DETAILED RECORDS!
"Words mean what words say" - so only the process of roll-out is being reviewed?
"The letter said: "Broadly, our view is that we see a need for both patients and clinicians to be able to access patient records in an electronic form. This is part of our thinking about making information transparent and available..."
Does that mean their thinking about making information includes confidential information such as everyone's medical records?
"In relation to the Summary Care Record, we believe the current processes that are in place need reviewing to ensure that both the information that patients receive, and the process by which they opt out, are as clear and simple as possible.""
So apparently what is being reconsidered is the **current processes** and not the SCR itself - which presumably will still be implemented unchanged.
"Words mean what words say" - possibly even when uttered by politicians!
This only applies to England, not Scotland (where the ECR only includes medication allergies and adverse reactions - the useful part of the SCR) : in England, if you are one of the significant number of patients who have not even received a letter, you might like to look at the official website giving the CfH view of the details:-
where, if you want to, you can download an opt-out form - or several if you want to opt-out your children as well.
Access to medication, allergies and adverse reactions - assuming that the urgent care system is able to access the SCR - could be useful: disorganised and unspecified summary extracts less so: and in an organisation as large as the NHS, illicit access is inevitable - and likely to be built into the business plans of people wanting to target individuals - or even promote sales of snake-oil!