Starting gun fired for Summary Care Record roll-out

Tags: CfH consent DH GP iSoft PCT Scotland SCR Security Summary Care Record

15 Mar 2007

The government's ambitious plan for a national system of electronic summary care patient records (SCR) will begin trials tomorrow at two GP practices in Bolton, in the north-west of England.

Approximately 14,500 patients will have a summary of the GP record, containing details of name, address, medication history, serious illnesses and allergies, uploaded to a national database unless they choose to opt-out during after an eight week consultation period beginning today. Letters and leaflets explaining the programme will go out in the next few weeks.

By July, eight weeks after the end of the consultation phase, Bolton's out-of-hours provider and A+E department will be able to view the summary record.

Professor Mike Pringle one of the two clinical leads behind the project told E-Health Insider: "This is the starting gun for the early adopter programme for the Summary Care Record." He said he expects a total of seven PCTs to be involved in the programme by the end of the year.

The first two practices are Keardley Medical Centre and the Kirby, Page, and McMillen practice, Bradshaw Brow. The first of the practices use InPractice Systems GP software, while the second uses iSoft GP software. Other practices, initially from Bolton PCT, will follow over the next few months.

Dr Liaqat Natha from Kearsley Medical Centre, said: "There are huge potential benefits from making patient records available to all staff caring for them, through the secure NHS network."

The creation of the summary care record, which will be accessible to authorised clinicians working in A+E departments, and GP out-of-hours providers, is intended to be of value particularly as an emergency care record. A similar project is already being rolled out by NHS Scotland, while a summary care record project has been running in Hampshire and Isle of Wight for some time.

The DH says the national database of summary patient records will provide the basis for safer treatment in all care settings, reduce duplication and lost records, saving time and money.

Patients will be able to choose whether they wish a summary record to be created for them, whether they want it to be shared, and be able to change their mind at any time. Individuals will also be able to securely view their record online.

As the SCR develops it will also record details of each patient's encounters with different parts of the NHS, providing different clinicians treating them, including their GP, with a complete overview of care they have received.

Connecting for Health, the NHS IT agency responsible for the project, stresses that this summary record will not replace the detailed patient medical records held by GPs and hospitals – which will remain the medico-legal record. CfH says that the electronic record will enjoy higher levels of security than online banking.

Professor Pringle stressed that the subsequent roll-out programme would be based on the experience at the first pilot sites. "The evaluation team will be there throughout the early adopter phase."

Professor Pringle told EHI there were now no deadlines for the full roll-out of the project. Guidance issued to all strategic health authorities last month said that following the 'early adopter phase' now underway there should be a full roll-out across England of the SCR by the end of 2008.

"The end of 2008 is not a target. There is no target for this," said Prof. Pringle. "By the end of the year we expect to get a pace that is sustainable. We are not going to rush it."

With the patient consultation beginning today in a blaze of local and national publicity, patients will have eight weeks to decide whether they want their record loaded onto the database, plus whether they want their summary record to then be available to suitably authorised clinicians. Unless patients of the two initial practices choose to opt-out by the end of the consultation period, a summary record for them will be created automatically.

"Our advice to patients is that you decide whether there is a summary record and you decide whether that summary record is shared," said Dr Braunold. She said that once they had decided they were happy to have a summary record created and uploaded to the national database they can at any time decide who and when it is shared with the functionality acting as "a consent to view button". Sealed envelopes will not form part of the early adopter phase.

Asked how many patients CfH thought would opt out Professor Pringle said: "Based on the experience of Scotland and Hampshire and Isle of Wight we expect very few will want to opt out."

Once the first two practices have loaded up records, other practices from Bolton PCT will follow in their footsteps. Initially the summary record will be available to clinicians working for the local out-of-hours provider, with the local A+E department to follow.

CfH's other GP clinical lead, Dr Gillian Braunold, told EHI that in the near future patients will be able to access their summary record using the online patient portal HealthSpace. "We won't do it with the first two practices but soon afterwards."

Patients will have to securely register to use HealthSpace, and provide a form of ID. They will then get an entrance card, which has a 5x5 grid of numbers on it and PIN number by post. To access their summary record they will have to provide a grid reference from the entrance card and their PIN.

Dr Braunold stressed that the experience of the early first two adopter sites would be carefully monitored and inform future roll-out plans. "We're doing this very slowly and carefully, so we can be fleet of foot."

She added: "I'm very proud of my colleagues in the first two practices going live who are also taking on the pain of going through all the business processes involved. This is about changing the way people work"

Reader's Comments

Authorised Clinicians?

15 Mar 07 15:03

While it seems that the patient's access to their own records is reasonably secure, with the exception of sending the information through the postal system, there is some concern over how the "authorised clinicians" are identified. I am lead to believe that Legitimate Relationships are not yet sufficiently in place to automatically establish the absolute authority of an individual to view the various parts of the patient's summary record. Some parts of the records may be clinically sensitive whereas other sections will be quite innocuous. It will be interesting to see how this is managed to the satisfaction of the clinicians and the patients.

good by confidentality

stressfreedave@hotmail.com

15 Mar 07 16:03

[quote]Asked how many patients CfH thought would opt out Professor Pringle said: "Based on the experience of Scotland and Hampshire and Isle of Wight we expect very few will want to opt out."[/quote]

It has to be pointed out that most people inhampshire do not know their record was shared.

As for Scotland. I live in the Grampian area and I tried opting out and was at first told that I was not allowed (now got that sorted). The health professionals up here also scared people into allowing it claiming that it would imped health care if they said no, implying that it would be dangerious to say no and yet they cant explain why a receptionist not knowing you were on viagra until 7 weeks ago would imped health care or whay a doctor not knowing that you were on antidepressents ect untiol 7 weeks ago will imped their ability to treat you for a broken leg (according to the info they gave out it would only be current medication, no mention of a medical history and no mention that reception staff will be accessing the audit trials showing where else they have had treatment. My GP cant/wont say if GUM clinics have access to it).

The fact that the article says "medication history" goes to sj=how that all medications will be shared (I cant work out why not knowing a patient was on antibiotics 3 years ago would imped health care).

I would love to know if patients are getting told their data is being shared with SUS, admin staff and it will be a case of tell all doctors/nurses or tell none (I could eaily name practices in Aberdeen and Morecambe where that is the case). Based on past experience the patients will not even be told who knows what about them.

8 weeks for 14,000 patients to few their records and say no and for GPs to provide medical treatment is hardly what I would call enough time.

More of a "runner up"

15 Mar 07 16:03

Wasn't the Hampshire and IoW project mentioned in the report something to do with the NHSIA's ERDIP Programme that ended 3 or 4 years ago? So what has been the delay between these "innovators" and the Bolton "early adopters" to which Professor Pringle refers?

If the report is correct, by July 2007 (five years to the month after Richard Granger's appointment was announced) will be no more than 14,500 patient records viewable in a single local A&E Department and by a single local OOH provider. Perhaps Dr Natha could enlighten us about the huge benefits (for Boltonians at least) that he envisages from this?

For me, this is just another belated and underwhelming CfH offering that adds nothing to what was being achieved years ago.

Official opt-out form available

Neil.Bhatia@nhs.net

16 Mar 07 11:03

NHSNet connection : http://nww.connectingforhealth.nhs.uk/patientrequestform.pdf

if not NHSNet: http://www.ymcentre.freeserve.co.uk/download/patientrequestform.pdf

GP Guidance: http://www.nhscarerecords.nhs.uk/nhs/publications/gpguidance.pdf

NPfIT Bashing

16 Mar 07 13:03

While there has understandably been a large degree of NPfIT scepticism on E-health Insider for a while now, it’s okay to look at something and say “Well done!” Especially when the potential clinical benefits of this sort of information flow are quite clear.

The scale and the delay in the deployment aren’t great, everybody knows that – but there’s enough NPfIT bashing that goes on in this site to get that point across.

And (regarding the above comments) personally, I’m quite happy the Doc knowing that I had Penicillin 7 weeks ago without any adverse reactions. Or that I [Hypothetically] came off antidepressants 7 weeks ago and am been admitted into A&E under suspicious circumstances (In which I happened to break my leg). Or the fact that I [Hypothetically] am having problems with my vision and in fact have a genetic retinal disorder which has been exacerbated by my taking Viagra until a few weeks ago (A documented contrindication).

And while we need to be aware of the issues around patient confidentiality and system security, it does seem to take up an inordinate amount of time and effort. Especially when compared to what’s currently going on in most NHS organisations in the way of bad information practices. We should stop that scaremongering.

So personally, I won’t be opting out. I want my clinical information shared with as many healthcare professionals as necessary to get the job done. It’s restricting this information flow that can cause me the harm, not an Admin worker who happens to see my clinical notes as an aspect of their role.

All healthcare staff work under policies and guidelines that will protect my information as much as any security system should need to. I’m happy with that.

John jwc197@yahoo.com

Re: NPfIT bashing

16 Mar 07 16:03

I'm not quite so clear about the potential benefits that the SCR will provide. What real (rather than hypothetical) problem will be solved? And if there is demonstrably a problem that SCR will address, is the cost justified or should the NHS be using its increasingly scare financial resources to solve other more pressing problems? Also, what will SCR do to prevent or mitigate the "bad information practices" to which the previous comment refers?

As regards the "bashing", IMHO NPfIT has had an easy time overall, given the limited progress to date.

re Bashing

stressfreedave@hotmail.com

16 Mar 07 19:03

First of all people like me do not "bash", what we do is tell the truth. If that means criticising, then that’s tough luck. NPfIT/CfH or what ever they call themselves don’t like it, them they should grow up.

If you want to tell all doctors/nurses and their admin staff that you had depression, sexual problems or even STDs/STIs, go for it but that does not mean every patient should get told share it, or you could die. The idea that you will have a sudden loss of vision because you stopped taking viagra 7 weeks ago is highly unlikely. You are more likely to have a progressive loss rather than getting out of bed and not being able to see. You should have seen your GP (even if you went to hospital you could easily tell them). I also assume that when ever you were refered to a consultant you demanded that your GP sent your entire record or at the very least the GP told the consultant you have had sexual problems or been raped (in fact when GPs refer patients, they actually restrict data sharing).

How far back should that penicillin issue go? What if it was not in the last 7 weeks, what if it was 7 months or 7 years?

Harm is not just physical, it is emotional to. You might not care about admin staff knowing about that erection problem but other may be ‘harmed’ by that while others will not get antidepressants because they do not want that fact shared with others. Considering that can lead to suicide, I hardly view that as a benefit to the patient or anyone else. In fact based on the analogy of harm is not done by access, that just raises the question, why have controls, why not make all data available to all 1.2 million in the NHS, social services, police, researchers and a growing list?

Relying on policies and procedures is not wise, history has shown this to be a dangerous thing to do (if you want I can list them).

Useful for Secondary Care...

18 Mar 07 10:03

If the summary care record contains an accurate record of a patient's current (active) medication then this would be invaluable to secondary care clinicians when admitting a patient to hospital, as the current situation regarding medication on admission is confusing and dangerous. If this information could be imported into the hospital prescribing and dispensing systems using dm+d/HL7 - even better.

NPfIT Bash

18 Mar 07 16:03

Over four years, GBP1.5 billion, huge song and dance, massive disruption, IT planning blight and we get 14,500 partial patient records onto the spine. Pathetic.

"Undisputed that access...save lives. I dispute

gerard@careprovider.com

20 Mar 07 22:03

Your leader states: " What is undisputed, and borne out by the clinicians already accessing a summary record in Scotland and Wales, is that access to medication and allergy information out-of-hours can only improve patient care and in some cases even save lives."

I dispute that.

Everything in medicine carries risk and benefits: drugs have side effects. CfH is no different, but the CfH evangelists NEVER mention the other side of the coin and the risks that the new procedures will create.

Codes mean different things when collected in different places for diffeent purposes. For example, I mark a patient as being allergic on my GP system to a drug meaning do not give it again in primary care. Hospital reads that as meaning the patient would collpase if given the drug. Patient is then denied penicililn and related drugs and succumbs. Not having any information would have been better for the patient. What I mean by allergy may not be the same for a hospital. Many penicillins allergies are incorrect. To exactly code what happens when the patient complains of an allergy would require a pocketfull of codes which we do not have the time or need for; if CfH insitis it will make work so clumsy that rubbish will be recorded the "like had chat to patient" code on of the mst common on systems which demand codes at each consultation.

My own relative's treatment was prejudiced by incorrect records that the hospital got on admission....the hospital took the G.P.'s records of dementia (in fact it was mis-diagnosis or coding of Charles Bonet syndrome). He was not demented. Nobody took a full history or Mental Test Score having read that, and lost interest in his presenting complaints. Bt the tine we understood why they were not treating or investigating him....having had to demonstate his mental agility to the staff, he was too weak and died 10 days later.

Having direct access to records is designed to prejudice doctors to avoid duplication, but that will prejudice care and deny patients of a second opinion.

In the middle of the night take a history and examine the patient with a clean unbiased sheet. Get on the phone to the G.P. the next day if you like. Having direct access immediatley to records will induce further sloth that is rampant in the NHS

Indeed we are creating an inhumane machine out of the NHS.

Gerry Bulger

Re: I dispute

colin@clinformation.com

21 Mar 07 18:03

Gerry Bulger makes some highly valid comments. In my experience - and without offering a value judgement as to whether this is a good or a bad thing - the "personal health record" is (ambiguously) often as personal to the clinician creating it as it is to its subject. And the use of clinical codes in structured records - possibly constraining rather than enhancing expressivity - may well exacerbate this problem by failing to allow recording of some important nuances that are readily captured by natural language.

It's important that users understand these limitations but - as has been pointed out - we hear a great deal about potential benefits and much less about the assocviated risks.

Well Done I Say

21 Mar 07 20:03

I agree with John, I also won't be opting out as someone who suffers from Epilepsy I welcome the SCR.

I've had to carry cards, medical alert bracelets etc. to warn staff at A & E of my condition because I usually arrive incoherent and confused. I look forward to the day when I can turn up at A & E and the doctor can access my records, they'll know my condition, what medication I'm taking to control it and who to call when I need picking up to be taken home.

Sorry if I don't agree with the crowd but I think that's a good idea.

Not so well done

22 Mar 07 10:03

I would strongly suggest keeping the bracelet and card in case you are travelling abroad, or on a plane, or in Tescos etc where they will not have access to your record.

Additionally if you are unable to explain your diagnosis on presentation then you are unlikely to be able to identify yourself adequately. You will need to keep your personal details, ideally including your NHS number on your person. The doctor can then find the information within five or ten minutes. A useful way to carry these details would be on a card, or possibly bracelet.

CfH has a failed philosophy of language.

director@doctors.org.uk

25 Mar 07 22:03

Gerry makes an important point which illustrates one under-reported problem of CfH - that the language in which the spine is going to work is assumed to be univocal - ie. that words (or Read codes or any future replacement of them) are capable of only a pre-defined range of meaning. This represents a Victorian era philosophy of language definitively exploded by Wittgenstein and popularly ridiculed by Lewis Carroll. In reality, language has a much more plastic quality and its semantic is frequently uninterpretable in the absence of its semiotic. Therefore, I hope the Bolton trials will be adequately designed to ascertain harms done to patients by the system as well as any benefits that may be found.