Re: Is it time to put down this terminally ill scheme?
care.data is for *secondary purposes* - not direct patient care.
24 posts • joined 17 Jul 2009
care.data is for *secondary purposes* - not direct patient care.
HES - Hospital Episode Statistics - is data entered after the patient has left the hospital and Coded (in ICD-10) for payment purposes: GP data is entered (in Read Code or CTV3 - soon to be in SNOMED-CT) during consultation, for the purpose of direct patient care.
There is a difference - and it remains unclear how this will work - especially as every practice - possibly every individual making entries in the record - is free to make their own choice of Codes..
In the LSP contracts, general practice and primary care IT systems were also sold to the LSPs.
What remains of the deliverables in the CSC LSP contract - and is it the same for all three areas - the 2 ex-Accenture (North East & East Midlands and East of England) and the original CSC one (North-Weat and West Midlands)?
We do need to know just what the renegotiated CSC contract covers - and where the NHS penalties for failing to deliver the centrally imposed required number of - sacrificial? - sites will fall when all Acute Trusts become Foundation Trusts (so not bound by the LSP contracts), and SHAs and PCTs are replaced by the NHS CB and CCGs.
It sounds as though this government believes that only UK firms would access - and use - UK - or rather Enlish - funded research (not clear whether the same laws apply in the devolved nations - or whether the England publication requirements would apply in the devolved nations): if an invention is *not* patented or protected, what protection is there for the originators or funders from someone else patenting it elsewhere?
Surely the major question regarding David Cameron is his lack of judgement?
He was warned by a good many people that the phone hacking scandal was likely to continue to raise questions - and openly said he was "giving Coulson a second chance".
Likewise, while preaching equal chances he could see no problem with taking on the son of a neighbour as an intern.
Worst of all, he supports - or initiates - major changes and then has to bow to public concerns and change direction - or even abandon his plans.
How safe is a prime minister who puts personal loyalty to friends above the public - or even party - interest?
Dodgy Geezer, I agree.
Where there is a coherent plan, one can agree or disagree - but there is likely to be rational thought behind the proposed plans.
If you look at the two major public sector restructuring plans being implemented - NHS and Education - there appears to be no rationale - apart from individuals with private agendas and, in the case of education, shameless use of very dodgy statistics (did you hear More or Less - Radio 4 - discussing Michael Grove's misuse of statistics he knew to be false?)
Equally, in the NHS, there has been no suggestion that there is any evidence base for the mass reorganisation (top-down - despite manifesto pledges!) although it has been repeatedly requested.
Does anyone else find it slightly odd that David Cameron is planning to send his children to a brand new "Academy" - and seems confident that they will be accepted?
Of course, he has publicly stated his relaxed feelings about nepotism...
When the Personal Demographics Service (PDS) was introduced in the NHS and made widely available, it was recognised that for some people (think Animal Rights and Huntingdon Life Sciences), availabity of their address and contact number posed a threat to their personal security - and there is a mechanism for declaring yourself "vulnerable" in the system, meaning that address, phone number and GP are not displayed.
Will there be similar facilities in the new database, or will it be more like the recently abolished children's database where no opt-outs were allowed?
"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!
Even with SystmOne you - the patient - can refuse to share your GP - or Community - or Mental Health - record with any other organisation.. *and* refuse to upload to the SCR. Theoretically this should protect you.
There is, or course, the interesting question of "Data Controllers in Common".
In SystmOne, is the GP (as Data Controller for the GP part of the record) legally allowed to upload data belonging to other organisations e.g. Menatl Health, Substance Abuse and the GUM Clinic? After all, these bits of the record have their own Data Controllers.
And if the GP can act as Data Controller for the *whole* record, can the Podiatrist?
The SCR is part of a wide system transformation - and appears to have ambitions to become a complete, but unmanaged, detailed care record: a very different thing from the original plan for a summary for emergency care!
1. For the SCR to be of any use it requires a high uptake among the patients ( we can opt-out), the practices (they can refuse to upload if they feel the patients have not been adequately informed or that their data is not of a sufficiently high quality: no standards exist for this now), the GP system suppliers (some of them haven't developed the facility yet) and the local emergency care services, especially in A&E and hospitals (Adastra, the major supplier of Out of Hours software, has already developed the ability to integrate the SCR).
i.e. as a *patient* it is likely to be a very long time before you could be confident that if you live in Birmingham and have an emergency in Brighton, your SCR will be available to A&E when you arrive, unconcious! ;-<
2. The first upload will be medication, allergies and adverse reactions - and in Scotland, this will remain the total upload - so Gordon Brown and Alex Salmon only had this information accessed illegally. In England, there appears to be no end to the information which *could* be uploaded - including eventually hospital letters. In the initial "enrichment" phase (i.e. additions to the initial upload), there is no clarity on what would be uploaded, who would decide (patient? GP? PCT? SHA? DH?) or who would control the flag on the spine allowing (or preventing) upload from non-GP sources.
3, There is no standard for data - or record - quality in General Practice records - and the situation is complicated when more than one organisation contributes to the record: errors may be reasonably identifiable in the original record: exported summaries cannot be checked in the same way, so ommissions and errors could increase risks rather than decreasing them.
4. the SCR is designed to be readily available to individuals with legitimate role based access throughout the NHS - and in future, possibly Social Care.
How confident are *you* that someone, somewhere, some time will not abuse their position to look?
We know it happened to Gordon Brown and Alex Salmon: would we have heard had they not been so high profile?
So what is the high level strategy behind continuing this very expensive project - and which other NHS budget will be slashed to pay for it?
When the SCR (Summary Care Record) letters were being sent out in Cambridgeshire, some people received their own and other peoples in the same envelope, some received just their own and some received just someone else's.
I heard that when this was investigated, there were two stages where human intervention was required - and these were the points at which the errors occurred.
If the mailings are for promoting the latest frr offer, accuracy is not very important: the SCR and tax credits are much more important (although it is probable some effort will be made to chase up on the tax credit errors once known): what about mailings involving credit card accounts?
Do they use the same mailing houses?
I live in a "safe constituency".
If it hadn't been for receiving a polling card and the national coverage, I would hardly have notice there was an election at all!
I received 4 leaflets (two from one party) of which 3 were mixed with leaflets promoting local pizza suppliers: and when I got to the polling booth, I found a 4th candidate - minor party, won no seats - who hadn't even bothered with a leaflet!
I looked hard, but didn't see any campaign posters - not even one of the generic Conservative posters "Vote for Change".
I get the impression that some voters were more neglected than others - and that the electorate has done an excellent job: we don't like ANY of their manifestos, and have not voted for ANY of their manifesto bribes (can't call them policies).
Well done all!
If you look at the NHS, there is IT working well in all sorts of areas - and adopted without any need for force from the centre **because it serves a purpose and makes life easier for all involved**
GPs have gone from using Lloyd George envelopes to having totally paperless practices, including business processes (registration, pathology links, QOF) which are useful - and even, with some resistance when it doesn't work, C&B and ETP (Electronic Transfer of Prescriptions)!
Acute Trusts adopted PACS with enthusiasm - and grumbles are largely confined to being unable to view images held in other Trusts.
When a thing is useful, there is little trouble in getting it adopted: but the remaining systems being promoted by NPfIT - like the EHR or even the PAS replacements needed prior to EHR - don't appear to give early results to the end-users (clinical and administrative front-line staff) and do require a lot of work from them: time which can not be afforded when you're a junior!
If there wasn't a constant change in requirements (the 18 week target came after the contracts were set) suppliers might also find it easier to produce products which actually addressed the needs of the Acute Trusts - once there was an understanding of those needs.
As a GP, my ways of working have changed dramatically over the years since my practice invested in a GP system - and the demands and workload have changed and increased as well.
Everyone focuses on what has *not* been achieved: GPs were computerised long before NPfIT threw them off course: - but it is nice to see someone admitting that they got it wrong: is this a first? ;->
PCTs were instructed to sign up to uploading extracts to the SCR last year: the mailing of letters was accelerated because in December, they were told that there was money available for the PIP (Patient Information Program - supposed to be far more that a letter!) if it was done before 31 3 10.
The fact that many have not yet started uploading only reflects the time-scale: there has to be a 12 week gap between the letters being mailed and the actual up-load to allow time to opt-out, so if letters were sent mid-March, upload cannot start until mid-June. My understanding is that it will start then in some areas.
The problems with the SCR (as opposed to the Scottish ECR) is that after the initial upload of medication, allergies and adverse reactions (the really useful bit and likely to be good quality data) there will be "enrichment" of the record from the GP record (not clear whether that is now with specific patient involvement or on a practice plan - which might differ from the neighbouring practice's plan) and then with all hospital and A&E discharges - and possibly more: it seems to increase on an almost daily basis! ;-<
In the end, it might look a bit like an electronic Lloyd George envelope: stuffed with unconnested documents and impossible to use in an emergency!
Please help yourselves: **if you have allergies or major medical problems GET YOURSELF A MEDIC ALERT!
I can promise you - I hope - that in an emergency, doctors and paramedics will resuscitate you first - and check the SCR afterwards...
1. cut ministers pay by 5% and freeze pay for 5 years.
2. reduce numbers of MPs by 10%
3. Cap public sector pensions at £50000
4. ensure that everyone has access to GP between 8 am and 8 pm 7 days a week
5 give patients with long term conditions a personal budget to cover both health and social care
just a few examples.
Last time 1. was attempted, there was a 27.5% rise in allowable expenses to compensate - and a promise to make the 0% rise for all MPs up in the following year.
2 would seem to require a complete redrawing of electoral boundaries (I didn't think one was due just yet!)
3. capping public pensions (are GPs alone in not having a final salary pension but one based on life time contributions) would be problematic: I know Robert Maxwell was legally entitled to pillage his company's pension fund (and the same applied to "excess" funds in the Coalboard pension funds after privatisation) but should this be introduced, not as a considered change to the pension system but as a response to short-term national debt reduction?
4. 24/7 access to a GP is fine - but not possible when the partners in the business do the work.
The 2004 contract was brought in because general practice was in a state of melt-down and recruitment was becoming impossible. (I'm a GP partner).
Working 13 - 14 hour days as many of us do is causing massive early retirement: the demand that GPs should not only work 50 hr weeks (8.00 to 6.30 5 days a week) but increase that to 12 hrs a day, 7 days a week (8.00 am to 8.00 pm) - 84hr weeks - has cost implications in terms of numbers of GPs, staff, premises and IT systems.
Hardly a cost containment option.
5. I have looked at Personal Health Plans (support) and Personal Health Budgets (serious doubts: much of health care is an insurance: what happens to the medical care of the individual patient in case of a crisis, and whose budget does the funding come from?)
A unified budget for medical and social care sounds good to politicians - but might leave patients in a US (or private insurance) situation: "Sorry ducks, you've reached the limit for this year!"
6. newly qualified dentists to work for the NHS for 5 years: not sure whether this would breach human rights - especially if it only applied to dental graduates
Not saying the Labour - or any other - manifesto is any better: just reasonably sure that much of this is not deliverable, even under future legislation - and would have far reaching unintended consequences.
It seems that Lorenzo - supposedly developed for the NHS and UK - has been successfully installed in Germany and the Nederlands - and yet cannot be made to work even in a limited fashion in any Acute Trust in the NHS in England.
There seem to be a number of possibilities:_
1. The software installed outside the NHS, despite having the same name, is different from the version failing to be installed/work by CSC in the NHS
2. The software is the same but not suited to the NHS business model
3. Implementation is successful when performed by iSoft directly.
4. other explanations not listed here.
If 2. is true, what is the reason?
The contract for supplying a system is held by CSC - iSoft is contracted by CSC - and I had heard that iSoft is looking for NHS business in the 2/5ths of England where CSC does not hold the LSP exclusive contract - which also, apparently, has a clause that if their preferred system has been successfully implemented anywhere, the NHS has to pay for it as though it was implemented everywhere...
I hope that this time deadlines will *not* be extended, and contracts signed to prevent change: remember the rushed privatisation of the railways?
I'm a GP - so this is a GP take on the SCR.
1. it started like the Scottish ECR (Emergency Care Record) as an upload of medication, allergies and adverse reactions.
The medication is likely to be accurate and complete - and allergies/adverse reactions useful even if inaccurate or incomplete.
2. The SCR will then be "enriched" (without further notice or public or patient consultation) by information from, initially, the GP record then other sources including hospital discharges, lab results and other unspecified sources.
3. The data quality in GP records is very variable - making problems for the Urgent Care groups using it for patient care: *is* this record both accurate and with no significant omissions?
4. There has already been significant expansion in the scope and purpose of the SCR: it now looks as though there may be plans to make it a nationally available Detailed Care Record - i.e. the one and only medical record - with no clarity as to how this would be managed: like a SSEPR with *no* clinical or information governance at all!
If you have multiple medication and complex morbidity, advantages probably out-weigh risks (assuming, of course, that the local urgent care services have the capacity to access it!)
If not, lot of risk of holding misleading or incomplete information and no apparent advantage: why not opt-out now and opt-in at a later date if it proves useful?
I do not trust the Secretary of State for Health as Data Controller for the SCR: untrained and unqualified.
I do not agree that the patient has no right to opt-out of having an SCR or that this is a concession at the discretion of the NHS.
(check the SCR website FAQ for clinicians)
There are a number of slightly different issues around the SCR, as far as I am concerned as a GP interested in Health Informatics, and the situation is complex.
The recent outcry is partly due to a sudden decision at the end of February that DH/CfH will fund the sending out of the Patient Information (to every patient age 16 or older) **provided the information leaflets are sent out before the end of March**. The funding involved is considerable - so SHAs and PCTs would be accused of wasting resources if they did not seize the opportunity.
The prohibition on including an opt-out form in the patient packs is an added reason for concern, as many PCTs had planned, is also causing concern.
(there is a strong suspicion that the imminent election and possibility that an incoming government might stop the whole SCR has something to do with this unseemly haste)
Then there is the content of the SCR: there does seem to be mission creep - and a very fast creep at that!
Initially, the SCR would have resembled the Scottish ECR: medication and adverse reactions/allergies recorded in the GP record: then an enhanced SCR, where individual items were uploaded after consultation between patient and GP, and opt-out would only be after a face to face consultation with the GP.
After it was pointed out that this would mean an additional 50 million GP consultations just to get the SCR established, the plans changed to a "consent to view" model (i.e. everyone would have a SCR but no-one would be allowed to look without explicit consent) and an enhancement program based on a template displayed in each participating GP surgery.
I agree with Old Codger - there is absolutely no guarantee that the GP record will be complete and accurate - any more than there was when records were paper-based: the major problem is that information whether true or false - is very retrievable in electronic records.
This causes a problem when data is shared between organisations as you just do not know how good the information is.
Medication - particularly repeat medication - is likely to be accurate: allergies probably: then a declining order - especially if the event happened before EPRs or elsewhere.
Then there is the usefulness of the SCR.
To be really useful, there needs to be good coverage of the population likely to present in unscheduled care situations (OOH, A&E etc), otherwise there is no reason for the providers (OOH, A&E etc) to install the systems and change the ways of working to be able to use the SCRs available.
Unscheduled care usually happens close to home: if you go on holiday, the chances are that you are in reasonable health - or carry information with you - when you set out, so unless there is uniform coverage across the whole of England (and you avoid Scotland and Wales) it would still be sensible to carry information with you when traveling.
Access would be by smartcard with RBAC (Role Based Access Control) - but there are a lot of people working in the NHS.
One doctor knows the medication prescribed for Gordon Brown and Alec Salmon: in an enhanced SCR he would have known a lot more - but it would be selected information, and almost certainly dangerously incomplete from the treating doctor's perspective...
The NHS is also in financial trouble: I am not sure that this project will release funding and increase efficiency.
Ross has a lot of good points
The NHS Appraisal Toolkit is the *only* place I, as a GP, would normally store most of the information I need for my annual Appraisal and keep for Revalidation (coming to all doctors sometime soon).
The GPs - and hospital doctors - affected are those who *have* to have an Appraisal before the end of the 2009/10 NHS year - i.e. 31.3.10.
If the site is unobtainable for any reason, there will be consequences for both the individual doctors *and* their Appraisers - both sets having to run to tight schedules at the end of the year.
As the GP interviewed said, this is stressful for all the doctors concerned, both appraisers and appraisees, but no risk to patients: the major complaint among GPs on different lists seems to be the failure to email the documentation needed when they request it.
After all, the numbers affected are relatively low - no more than 4/52ths of the doctors in the country (I am adding two weeks to allow for the doctors needing appraisal in the two weeks after 3.3.10: appraisers usually need two weeks to read through all the Appraisee's evidence).
Surely there must be a Disaster Plan covering this contingency?
Finally, this taking down of the site affects all doctors coming up for appraisal, not just GPs, and will no doubt be causing as much stress in hospitals as in General Practice - maybe more....
The limiting factor on any mobile technology tends to be battery life, and DSLR cameras all have batteries that can be changed easily: if you expect to take a lot of shots, you take two - or three - fully charged batteries, and just change them as needed.
When will we see a netbook with the same system?
."always reactive instead of proactive
"and an audit trail will be maintained to ensure that incidents can be investigated."
Here's me thinking audit trails on all government confidential databases were a norm."
Having an audit trail for NHS smartcard access in NHS Hull didn't prevent unauthorised access to patient records for over a year: what makes ContactPoint security so much better?
And will being slapped across the knuckles with a wet fish - supposing someone notices a pattern (what if you only want one specific child.s - or both their parents' - contact details?) - act as a deterent in the majority of cases?
Technical security is obviously necessary - but isn't it a bit like expecting a notice saying "Shoplifters will be prosecuted" to put an end to shoplifting?
Is HP/EDS a US company subject to the Patriot Act?
And if it is, will the data collected be available without any safeguard to the US Government - for onward distribution?
I'm a GP with an interest in medical records and health informatics - see EHI!
As with most large IT projects involving an organisation as diverse as the NHS, some parts of NPfIT have been a success - including N3, PACS, PDS, the Registration Authority & smartcards/RBAC - and so are completely ignored!
The big problem - as always - lies with hospital systems and medical records.
Just looking at the requirements for an electronic patient record (EPR) in a hospital setting.
Technical - must be incorruptible, either intentionally or accidentally: must be available 24/364 (patients in ITU can't afford downtime for maintenance..): must be structured so that information is presented in comprehensible form to different specialities: must have access controls so that only people who have authority to see them have access - but also must not conceal information that would make a difference to safe treatment of the patient.
Presumably a hospital EPR is a SSEPR (Single Shared Electronic Patient Record) with all the problems of information governance outlined in the RCGP Shared Record Professional Guidance (SRPG) report.
Of course, if we ever get Lorenzo Regional Care and hospital, community and GPs have a single record between them, problems will increase - unless information and clinical governance of the SSEPR is sorted - which I, for one, doubt is possible.
*And we'll be doing it all in SNOMED-CT*
Should be interesting - if it ever happens..
What you are missing is the cradle-to-grave historical record, the complexity and fundamental fuzziness of the data being handled, the lack of any agreed language in which to handle it, the different record keeping needs of different organisations, the size of the workforce and the risk to business - and patients - when changing from one form of record keeping to a totally new - and alien - way of working.
GP records have been developed since the beginning of PCs in the early 1980s. The staff in a practice are stable (junior doctors move every 6 months) and the things a computer does easily and well reduces the workload for everyone.
Hospitals are much more complex, different departments have different needs, unlike GPs medical staff move to the patient (records difficult without affordable mobile devices), and without a good PAS, with a robust patient identifier, linking records for individual patients is hard.
The concept of being able to transfer electronic records electronically is relatively recent: in general practice, we now have GP2GP record transfer between two suppliers (EMIS and INPS): very good - but doesn't solve the problems of different practices recording things differently - or criteria for diagnosis changing over the years.
The original concept in NPfIT was that hospital record systems would absorb the local GP records - and the whole record would be able to be transferred to a different hospital intact: this dream didn't last long - and completely ignored the complexities of patient records.
I agree with the previous but 2 poster - a lot of medical records do contain inaccuracies - some from inaccuracies in the original letters dating back over the lifetime of the patient, some from transcription errors, some from mistaken identity (why do men want to give their sons their own name?) some from changes in terminology and diagnosis.
The article confuses three things: EPR systems in hospitals, the SCR (summary care record) and data security on portable media - whether paper or electronic: the security issues with EPRs not transferred to portable media may be even worse - but are totally different!
As regards sharing patient information appropriately for the care of the patient, why concentrate on monolithic single records?
Surely the old Thin Spine concept (records remain where generated and the spine enables location and viewing) is preferable?
How about a bit of interoperability instead of the destroy and replace current philosophy?