BMA calls for halt to SCR uploads

Tags: BMA Burns DH SCR

12 Jul 2010

BMA GP representatives are calling on the government to halt the uploading of any more Summary Care Records while a review of the programme takes place.

More than 300,000 SCRs have been created since health minister Simon Burns wrote to the BMA last month pledging to review the process for informing patients about SCRs and the content of summary records.

Dr Chaand Nagpaul, a Harrow GP and one of the BMA GP committee’s negotiators with a lead role on IT, said no more records should be uploaded until the review had reached its conclusions.

He told EHI Primary Care: “It’s incongruous of the minister to say the process needed to be reviewed and then for uploads to continue.

"We believe that there are some real concerns with the SCR and that we need to time to reflect on them and think about the best way forward. There is nothing to be gained by pushing on with something that needs review.”

Dr Nagpaul said it would also be a “total injustice” is full consideration was not given to the report from the independent evaluation of the SCR programme carried out by University College, London and published last month.

He added: “I think this will be a test for the government to live up to their own rhetoric about giving clinicians a real voice in the way the NHS is run.”

Following the announcement of the review the Department of Health said new Public Information programmes about the SCR would be ‘paused’ but uploads of records relating to patients already informed about the SCR would continue.

Just under 30m patients have so far been informed about the SCR programme through a PIP but the BMA argues that many patients remain unaware that a summary of their records will be uploaded to a national database unless they opt-out.

Fiona Barr

Hillingdon gets SRC discharge summaries (09 Jul 2010)
Almost £100m spent on fast-growing SCR (07 Jul 2010) (15)
SCR uploads to continue during review (21 Jun 2010) (2)
SCR evaluation finds few benefits (17 Jun 2010) (11)
Greenhalgh slams Burns SCR review (15 Jun 2010) (8)

Reader's Comments

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Neil.Bhatia@nhs.net

12 Jul 10 16:07

The government declares that "Shared decision-making will become the norm: no decision about me without me."

All talk and no trousers.

In the last 5 days alone, another 50,000 SCRs have been uploaded - for very many patients, without their knowledge or consent. The decision had already been made for them.

Let's hope the BMA finally act. But I'm not holding my breath.

Oh do hold your breath

12 Jul 10 20:07

The potential for the SCR record to assist in an urgent care situation where patients can't remember what medication they are on is real. The Greenhaulgh report shows little benefit yet reailised as the project has been hampered at every turn.

The perpetual barriers and issues raised by the BMA and most especially Dr Bhatia have delayed those benefits. Yes it isn't perfect, but a tiny minority of patients object. Most are apathetic, or very suprised to find we do not have a joined up service and records.

Are patients harmed by the sharing of this limited set of information ? I don't think so. Are they harmed by drug-drug or drug-allergy interations that someone knew about. Undoubtedly.

Consider, are you really presenting the patients best interests, or your own ?

The more SCR uploads, the merrier I will be

rsarson@blueyonder.co.uk

12 Jul 10 22:07

Without a wide population of data, how can one evaluate the effectiveness of the SCR? The nay-sayers want to strangle the SCR at birth by not allowing a meaningful population. They want to shoot the pianist before he even starts playing.

I hope Adastra will continue to publish its figures fortnightly about the use of the SCR by OOH practitioners. That will prove or disprove quite shortly whether the SCR is useful or not.

Then, let NHS Direct let us know whether the SCR is useful to them.

My guess is that they will soon wonder how they functioned safely before SCR.

Then, finally, perhaps, conventional GPs will come to realize this sooner or later.

Whose decision?

12 Jul 10 22:07

Patients have been written to and given a chance to opt out - less than 1% have chosen to do so, this incredibly low figure isn't explained away by people 'not understanding the letter', or there not being an opt out form with the info pack. This may be hard for the Dr Bhatia's (and I am sorry to personalise this) of this world to accept but most people actually think this is a good idea, and want one.

Who is Dr Bhatia to decide his patients didn't understand the letter? Or to not allow them to have a summary care record - something which may help them one day if they're taken ill out of hours - I hope he's ready to explain to them why he opted them out?

Rubbish

Neil.Bhatia@nhs.net

13 Jul 10 08:07

I don't think little old me has delayed this project. I have simply strived to ensure that anyone interested in the SCR has as much information about it as possible, not the CfH spin, but the real nitty gritty about enrichment, consent, legitimate relationships, deleting uploaded data, who the data controller is, central flags etc.

Information is power, and the poster's obvious anger reflects the obsessive control that the DoH and CfH have over how much patients deserve to know about the SCR. The fact that I have had to glean all this info via the FOI Act - and not without considerable difficulty in many cases - speaks volumes.

From the very beginning many GPs - like myself - many LMCs and the BMA have said that this should not proceed without explicit consent. It is that simple requirement that would have made a real difference to the SCR had it been introduced back in 2005.

Yes, everyone has their own viewpoint on the usefulness or otherwise of the Summary Care Record as it is now. Their are many ways to ensure that salient medical information is available to an out of hours GP. Whether this project is halted or continues won't be down to any single individual's opinion (except maybe that of Andrew Lansley).

Our policy has always been that any patient who wants a SCR can and should have one, that's their decision and one that they can make alone or in conjunction with their GP. I think if you ask many practices they will say the same.

hidden agenda

13 Jul 10 14:07

As the earlier reviewer pointed out, with figures published by those such as Adastra and OOH users of the SCR. The SCR will soon be validated as a necessary component in the NHS electronic infrastructure.

However there are lots of agendas in place, do all GP’s want their practice data shared? Probably not see Dr Bhatia.

For the NHS to function in a cost effective manner data must be available 24/7 across multiple locations. Thus asking patients to opt in as opposed to out is another attempt to slow the project.

In the times of austerity all industries look at data integration, summaries, etc to add value and reduce costs.

There are parties in the NHS that are diametrically opposed to this based on an agenda and cost is secondary, they may well cite clinical safety and how dangerous partial data is.

It’s extremely frustrating to see this rhetoric over and over again.

Physician heal thyself...

13 Jul 10 17:07

I've just had a quick look on CFH's website and most of the information Dr Bhatia talks about is actually up there, seems like you could have saved yourself some FOI request time!

Where I do agree is that knowledge is power - which is presumably why he won't share his?

it's not easy

13 Jul 10 19:07

As a patient, it took me almost a year to opt out of the SCR. At first the GPs were not aware of the programme and later were not sure of the procedure. Even now, I am not 100% convinced I have succesfully opted out. Apparently, if a mistake is made and a record is uploaded it will be impossible to completely delete it.

I am now trying to find out whether the hospitals I have been treated in have a separate process for uploading records. So far I have not got a definite answer.

I don't think contributers should assume too easily that people who want to opt out have succeeded.

Thank you

13 Jul 10 21:07

Well, as a patient I would like to thank Dr Bhatia for allowing me to base my decision to opt out on facts as well as principles and instinct. The public do not have the time or know where to look to do research in order to form informed consent or dissent, so Dr Bhatia's work has been of immense help in finding out the information that the DoH does not want me to know. I cannot see how less than 1% of patients have opted out so far, but time will tell us how that statistic has been fiddled. It will be interesting to see what the final figure of opt-outs is in a year or two's time. I wouldn't be suprised if people are not opting out for fear of offending their GP or other healthcare staff, in which case the DoH is abusing the doctor-patient relationship to get records uploaded.

opt out rate

14 Jul 10 10:07

Re the last post on fiddling opt out rates. There is a great deal of international evidence supporting the opt out rates in region of 1%. In Scotland even in a practice that chose to Opt IN patients to the ECS- ( sofar they have had express conversations with 50% of the practice population) and the opt out rate there remains at 1%. GPRD anonymised databse baseline earlier this year on 3 Million patients again came in just under 1%. There is no question that some people feel passionately they do not wish to have an SCR and opt out- as is their right. But the population as a whole do not wish to opt out. Gillian Braunold Clinical Director SCR

Re It's not easy

14 Jul 10 11:07

The only systems with the functionality to add information to the SCR are GP systems. Hospitals are unable to add information to the SCR at present but this may change in the coming years. If you want to be reassured that you've successfully opted out go and ask your practice and they can show you on the screen that your decisions have been adhered to. As for SCRs being impossible to delete that is untrue. You can apply to have them permanently deleted but if they have been accessed for clinical care they are part of the audit trail and cannot be.

I have no issue with patients opting out as long as they are making an informed decision and it isn't a knee jerk reaction to media and in some cases clinical scaremongering.

I also have to ask those that do opt out; does this mean that if you are in A&E and they call your GP practice for information on your medications, allergies and adverse reactions that your practice are unable to share this information? This is currently how staff in OOH, A&E and hospital pharmacies have to glean information on patients who may not know or remember or be in a fit state to provide all this information.

In support of Dr Braunold's comments the majority of people I have come into contact with during patient engagement sessions are in favour of the SCR and are astouded when informed that this basic information isn't already available to those in secondary care providing them with treatment.

If you do wish to have a SCR then by all means opt out but please consider the question I posed above as it is one that practices are starting to ask already.

Message from General Lansley....

14 Jul 10 11:07

Now look here you lot, stop bickering. I've toured this great nation talking to GPs and they've told me that they know best, so let that be an end to it! And that's an order!!

A&E

Neil.Bhatia@nhs.net

14 Jul 10 11:07

"I also have to ask those that do opt out; does this mean that if you are in A&E and they call your GP practice for information on your medications, allergies and adverse reactions that your practice are unable to share this information?"

No, of course not.

Opting out of the SCR means just that - a patient is not willing to have data uploaded electronically into the Summary Care Record repository. And only that. The forms used to opt out ask for nothing else.

It does not mean that the patient is refusing for their GP to discuss or pass on relevant clinical information to other healthcare providers, whether by phone/fax/email or in person, when required.

It does not mean that the patient is refusing for their GP to provide whatever relevant medical history is appropriate within a referral letter to a consultant colleague.

Opting out does not change how your GP sees you, treats you, refers you or discusses your case (including providing your medial history) with clinicians involved in your care. That remains as it is now, and if A&E rings wanting information on a patient in their care then GPs will always provide the relevant details.

Opting out means one thing and one thing only - not to have summary data extracted and uploaded to the CfH SCR database until such time as the patient opts in. Simple.

Re A&E

14 Jul 10 13:07

"It does not mean that the patient is refusing for their GP to discuss or pass on relevant clinical information to other healthcare providers, whether by phone/fax/email or in person, when required."

"if A&E rings wanting information on a patient in their care then GPs will always provide the relevant details."

And how exactly do you get a patient's express permission to share this information if they are not present? Or do you assume consent?

ring for information?

14 Jul 10 13:07

"That remains as it is now, and if A&E rings wanting information on a patient in their care then GPs will always provide the relevant details."

Pardon my naivety, but I wasn’t aware my GP would tell anyone who phoned up my personal clinical details. How is the identity of the caller established? What audit controls are in place to ensure my data isn’t being given out inappropriately?

Re: Opt out rate

14 Jul 10 14:07

I would like to opt on, but until the system is made more secure, perhaps after a few publicised breaches, I am staying out. The thing that has most shocked me, and which is generally hidden from public knowledge unless you go looking, is the PDS. If the PDS is there without myself being informed of it, what else is out there, or might come about without my knowledge? The public is only just beginning to find out about the NHS database, and those that do know are under the impression it has been suspended due to the announcements around election time...

just to say.......

14 Jul 10 16:07

And did the last poster know that their demographic details were on a national database WELL before the NHS computer/PDS/SCR was ever conceived (since about 1980 I think).....it was called NSTS, was available to 1000's of users, and has simply been replaced with a more modern system for a more modern NHS called PDS.

The NHS needs this information to manage the NATIONAL service it provides the people of England.

The SCR review and the PIPs

14 Jul 10 17:07

One of the key questions here is about the effectiveness of the information campaigns. The UCL review found poor awareness of the SCR. But is that because the information campaigns have been ineffective or are patients so unfazed by the idea of sharing basic details about their care that it barely registers with them? The health minister says his review will look to ensure the information patients receive and the opt-out process is as clear and simple as possible. If changes are made what are the consequences for those patients for whom records have been uploaded pre-review and for the 28 million people who have already received information through the Patient Information Programmes but have yet to have an SCR created?

Fiona Barr - Editor, EHI Primary Care

Opting Out

16 Jul 10 07:07

Opting out is quite rightly down to individuals choice, however I'm still puzzled why anyone would want to.

The list is endless of organisations that have 'personal' details on people on huge databases - Banks, credit reference agencies, social networks, ISPs, etc yet no-one seems to feel that the benefit these organisations offer outweighs the risk of data being access by unauthorised parties (even before considering offshoring).

As for the comment about security breaches, I;m not aware of any health related breaches coming from the central databases. Unfortunately most of the issues seem to be with locally stored data.

Accuracy?

16 Jul 10 08:07

So far 18 posts and not one has raised the issue of the accuracy of the data in the SCR. Given our knowledge of the generally awful data quality in hospital PAS why should we believe that it will be any more reliable in the SCR. And bad data is a lot worse than no data - and much more dangerous. I have opted out.

Data Quality

16 Jul 10 10:07

If you opt out of the SCR, it doesn't mean your medical record will be accurate. It simply means that those inaccuracies wont be replicated onto an SCR.

Surely a more sensible and clinically safe approach would be to opt-in then verify your own record on Healthspace (or any other tbc patient portal)

Pretty easy really.

Carts and Horses - we could/should/must learn

16 Jul 10 11:07

from EHI article

Publicity blitz for Scotland's Emergency Care Summary - September 2006

http://www.ehiprimarycare.com/news/2103/publicity_blitz_for_scotland's_emergency_care_summary

"The ECS was set up in Scotland in 2003 when the vast majority of GPs opted out of out of hours work and it was agreed that out of hours doctors would benefit from some basic patient information.

The ECS contains data on current medications, repeat medications and allergies plus basic demographic information. It is extracted from GP records and held on a central data repository, the ECS Store, and updated twice a day if anything is changed in the GP record. The summary can only be accessed with explicit patient consent unless a patient is unconscious.

The system currently holds records on the 4.4 million people covered by the GPASS computer system. The remaining 0.6 million people in Scotland are covered by the GP commercial suppliers of which three out of four are currently undergoing testing ."

---------------

All seems very straightforward with an express desire to provide OOH clinicians with a consistent set of information. To repeat

"The ECS was set up in Scotland in 2003 when the vast majority of GPs opted out of out of hours work and it was agreed that out of hours doctors would benefit from some basic patient information."

Emergency Care Summary (ECS) is now implemented and working in Scotland at a fraction of the cost and bruhaha of the over-ambitious SCR that has very different origins in the fallout from not being able to implement the DCR - probably well intentioned but ultimately a costly failure IMHO.

- the previous comment about patients reviewing the quality of their data is well made; in Scotland (I am often told), patients can request to see the ECS (extract of their GP record) at their General Practice thereby having the opportunity to confirm the accuracy of the information held on them. ECS viewers have been available for GPs to use with their patients from the get go - as far as I am aware there are no SCR viewers released for GPs in England and therefore no opportunity for patients to actively review the data held on them with their GP.... this is such a basic oversight it is unbelievable.

What this means in practice north of the border is that rather than going through the rigmarole of opening up an advanced Healthspace account (which might currently only be available to a patient many months or years after an upload is made to create an SCR) - patients can request to view the record in situ.

We really have seen the cart put before the horse in England.

re Oh do hold your breath

16 Jul 10 11:07

oh well said that person!

Of course, with GPs now getting the chance to control where the money goes, they'll have even more clout in blocking anything which isn't to their particular tastes.

What makes me smile, in a very sad and fatalistic way is the crap in, crap out flaw to the SCR; the idea is brilliant, but the basic point of most GPs' systems containing extremely poor quality data can't be escaped. I've seen the data on their systems, wondrous electronic scribblings from people I wouldn't have trusted to use an etchasketch properly - the recording of twins with the same names and NHS numbers and passing this on to the SHA, dosages on prescriptions amended, and my personal favourite of changing rubrics from various sexual/psychological problems to "serial non-attender" and not bothering to inform the people migrating their data to new system (resulting in a large percentage of a town on the south coast being listed as animal botherers!).

Perhaps the budgets being passed to the GPs could be used to hire temps to clean up the data?

Ask yourselves this: were you required to hand over your patients' care to a new doctor for some reason, illness/lottery win/being hit by a bus, how long would it take your replacement to work out your own personal shorthand way of recording diagnoses? This is the impact your records will have on those using the SCR every single time they treat one of your patients.

more sensible

Neil.Bhatia@nhs.net

16 Jul 10 11:07

Check your GP summary with your GP. You can do this the next time you have need to see him/her, or (if time is really of the essence) then you can do this over the phone or (if your GP is happy) by email.

The initial upload does not consist of vast amounts of information. It will not take long to check the data.

Correct, add, amend the summary data as agreed between the both of you.

Opt in explicitly once you are happy with your summary data. Your GP is now certain of your consent.

Be reassured that when your data is uploaded it will be accurate.

No need to "join HealthSpace".

Next time you have need to see your GP, ask him/her to print off a copy of what is on your SCR, or show you on the screen, if you wish.

not true

Neil.Bhatia@nhs.net

16 Jul 10 11:07

"as far as I am aware there are no SCR viewers released for GPs in England and therefore no opportunity for patients to actively review the data held on them with their GP.... this is such a basic oversight it is unbelievable. "

Not true.

Any GP practice uploading SCRs has the software to view what is on the SCR.

For example: http://www.inps4.co.uk/downloads//cfh/INPS_V3_National_Summary_Care_Record_User_Guide_v0002

Any GP can request the appropriate RBAC roles to view the SCR via the Spine Portal (N3 web) application, SCRa, if they feel that is required. See my site for the RBAC requirements.

But - obviously - any patient can check with their GP the accuracy of their GP-held summary data. That is the feed to the SCR (initially), so "correcting" a SCR requires correcting the GP-held data (the GP cannot correct the SCR "directly" on the Spine).