London LMCs run own SCR campaign

Tags: CfH London

26 Feb 2010

The summary care record roll out

Londonwide Local Medical Committees is advising GPs to consider proactively contacting patients about the creation of Summary Care Records.

The LMC said that whatever individual GPs felt about the project “it is our duty as doctors to ensure that patients are adequately informed about the handling of information recorded.”

NHS London is to run 12 week Public Information Programmes on the SCR across all primary care trusts in the capital by the end of March and aims to create SCRs for 100% of Londoners that want one by March 2011.

Patients will receive a letter and a form for opting-out from their PCT, but the LMC said concerns had been expressed “that the very short period which patients are being given to exercise their right to choose is far from ideal.”

The LMC added: “Many patients will have worries which they will wish to have addressed and many may not bother or may ignore the letters and miss their chance to opt out from the start.”

In addition to the PIP, the LMC suggested that practices might want to contact patients directly or use patient participation groups or practice websites and text messaging systems to outline patients’ options on the SCR.

The LMC has also created its own poster and information leaflet and opt-in/opt out form for practices to give to patients about the SCR.

The LMC information emphasises that patients have “a right to control” what happens to their records and that that the BMA believes that records should not be uploaded without explicit consent.

It does not mention the ‘consent to view’ model introduced for the SCR last year, which the BMA said was a positive step forward.

The leaflet says there are “pros and cons” to having an SCR and says that it would enable emergency doctors to have access to medical records which might avoid mistakes or problems.

The leaflet adds: "On the other hand, there is not much evidence that these sorts of systems dramatically improve care. Having all your personal medical information in one place increases the risk of other people accessing it without permission (known as ‘hacking’) or it getting lost.”

The poster advises patients who want their medical records “to stay confidential to this practice” and those who are not sure to sign an opt-out form at reception.

The opt-out rate for the 1,139,754 SCRs that had been uploaded to the Spine by the beginning of February was 0.66%.

However, one of the reasons the ‘consent to view’ model was introduced was concern raised in the independent evaluation of the SCR that concluded that patients remained ignorant of the basic issues despite receiving information.

Fiona Barr

London SCR roll out complete in a year (09 Feb 2010) (7)
Summary record roll-out builds momentum (21 Dec 2009) (2)
London SCR roll out announced (16 Nov 2009) (1)

Reader's Comments

you should know better

cunpr@globalnet.co.uk

26 Feb 10 08:02

Dear E-Health insider, Please stop promulgating CfH miss-information. The true "opt out" rate is unknown. The opt out rate quoted by CfH from teh SCR pilots is a rate calculated from number of opt outs vs the number of addressed envelopes printed (we do not know they are all delivered). The UCL report found that 1 in 7 people when asked did not remember reading the contents of these envelopes. Therefore the actual opt out rate may be as much as 7x the quoted figure i.e about 5%. You have reported this in previous articles on the subject.

If you are going to use such quotes you will therefore allow me to report that annecdotally some practices that are actively consenting patients are experiencing opt out rates that vary between 45% and 100%.

In my own practice, which has not yet been mailshotted and where we are not actively consenting patients, we have 0.1% of our patients already asked to be opted out.

Regards Paul Cundy

Splitting hairs

26 Feb 10 12:02

Maybe the 0.66% figure ought to be issued with the qualifier that its CFH's 'claimed' opt out rate - I guess that's taken as assumed knowledge by EHI. However, the central issue is pretty clear: the opt out rate is very low and the vast majority of people really don't give a monkeys.

The vast majority are unaware whether to give a monkeys or not

26 Feb 10 18:02

The issue is that every patient has to right to be informed that their personal medical data will be stored on a Government database unless they make a real effort to opt out. CfH have banned the inclusion of opt out forms in the patient information packs, despite the Local Medical Committees pleading for this - why do you think that is? Would you tolerate the banks assuming you would not mind giving extracts of your financial affairs to the Government, and making it a real bother for you to protest?

There are other ways of granting patient and clinician access to records from anywhere in the world without have to extract, store and attempt to synchronise these on a Government database.

Every citizen has the right to be given the chance understand the full implications of opting in or opting out - and the method of doing either should be made equally easy, otherwise you are sinking to the level of engineering the results.

Letters don't always get delivered. If they do, and the recipient has moved, the new occupants will most likely put it in the bin. The numbers actually getting back to the PCTs for FP69s to be issued will be a poor percentage of those who have moved away, so many will have SCRs created without the opportunity to do anything about it.

There should be a national debate on this one, on TV, press, radio, local radio, explaining the full implications, and every paper should print an opt out form, as well as having them available in GP Surgeries, post offices and libraries. Why be so afraid of letting people genuinely decide? If the really don't give a monkeys, the forms will go unused, and everyone would be happy?

I am a patient and I do "give a monkeys"

rsarson@blueyonder.co.uk

03 Mar 10 10:03

As a patient, facing a new doctor in a surgery away from home, I resent him/her wasting his/her time and mine, asking questions which he could have read off a summary record in two seconds flat. and I doubt his/her ability to treat me properly if he hasn't dialled up my back-history.

Therefore I hope that the leaflets sent out to patients accentuate the positives about care records, and tone down the negatives, which the medical establishment and your other commenters seem to push all the time.

I, and I suspect many other patients, can't wait to get our record up on the Spine. We will get better care.

Not being negative

cunpr@globalnet.co.uk

03 Mar 10 12:03

To the last responder - will you get better care? Currently there's very little evidence for that. That sort of illustrates the issue I as a GP have, this is not evidence based this is aspirational, there is a beleif that these systems will be safer better etc. I have no issue with people beleiving this but I do have an issue with what is in effect an experiment using the populations medical records. By all means experiment but don't hoodwink people with other justifications. DOn't claim its going to improve care when we don't know whether it actually will. Look at NHS Direct - hundreds of millions spent but no evidence of significant health gain.

The medical profession is not anti the idea of an SCR, we are anti the process which is at best cavalier. Most GPs have been through the EPR honeymoon and know that computer records can be just as confusing and error prone as paper based systems, its swings and roundabouts.

So could the SCR harm? Well a central tenet of teh SCR are Allergy records. Initially these were heavily scrutinised in the pilot practices but now in the headlong rush there is no scrutiny of these records. Any old rubbish the GP has recorded will go up. Lets examine this; well in general terms entries claiming an allergy to penecillin are found in 10-15% of records - electronic or paper based. The actual blood test confirmed incidence of true penecillin allergy is roughly 3%. So penecillin allergy is going to be over reported on the SCR by up to 5x. The result is that the emergency care doctors are going to prescribe second line super antibiotics. The end result of that is that antibiotic resistance will grow and patients will die from untreatable bugs. Does that make you safer?

The next bit of the SCR will be medications, the list of drugs you are on, but of course its not a complete list of what you are on. So the medication part of SCR should be labelled "Medications - NOT!"

After that we have enriched records chosen by patient and doctor on an event by event basis - so subject to all sorts of hard and soft objective and subjective bias. Enriched SCR would be better labelled "Random SCR".

So can you be certain that SCR will make you better and safer? Who knows - I don't. My arguments are countered by a charge that they are hypothetical ones - which is true.

That counter merely illustrates the point I opened with; its an experiment. Its worth doing but its dishonest to claim its anything else and patients are not being consented on the basis that its an experiment, they are being consented on the basis that its a proven benefit. Paul C

Meat on the bones

03 Mar 10 20:03

Dr Cundy states

"Lets examine this; well in general terms entries claiming an allergy to penecillin are found in 10-15% of records - electronic or paper based. The actual blood test confirmed incidence of true penicillin allergy is roughly 3%. So penicillin allergy is going to be over reported on the SCR by up to 5x."

It's refreshing to hear an objective and factual statement like this - it's so easy to take sides for and against the roll-out and any dissent just to be see as wholly negative - life just ain't like that.

Dr Cundy is no less 'caring' than the next GP for having an objective view and his comments about how the record should be regarded are (I believe) well meant not superfluous.

Summaries should be quite specific in their purpose as per existing RCGP guidelines (discussed elsewhere in EHI thi sweek) - in point of fact what is being discussed here is an extract of existing GP held records that might be accessed in an unscheduled care setting (i.e. outside the GP surgery) so we might think of this as as an unscheduled care extract - certainly not a fully thought through and (totally reliable) medical summary.

Penicillin allergy

04 Mar 10 13:03

I agree with the last comment - it is an unscheduled care extract, and only aspirationally a summary care record. Hopefully developing the latter in time may be positive for us. However what practitioner or emergency practitioner would not want to know that somewhere there was in the record a penicillin allergy. And if they did know they would not (no doubt like the GP) prescribe penicillin I would guess (the insurance claim would be fascinating). While the writers make a good case for what the record is not, the prescription of penicillin based on what is said in an unsceduled care extract and remembered by the citizen (assuming they are able to talk/remember) is better than no information. Treating an unscheduled care extract as a statistical reporting method is also very suspect, but maybe the writer was just making a good case for chemical tests of reported penicillin allergies, that could then go on a summary care record as a known test result at some time when we have got past our initial tentative efforts. "Reported (circa 57 years ago) penicillin allergy sufferer"

Better to know something than nothing

rsarson@blueyonder.co.uk

07 Mar 10 18:03

Thank you for the comments on my plea for even-handedness. As a simple and aged patient, I am afraid I do not understand some of these responses made by Insiders about the reliability of Allergy entries in SCRs.

I trust my GP and the many doctors who have treated me recently in hospitals (not far from where Paul Cundy practises) to record my allergies and medications accurately. When asked by a doctor I have not previously met about the many medications I am on, I sometimes forget some of them. The SCR will be more accurate.

Maybe I am being naive, but surely some back-history is better than no information at all. Otherwise, a doctor is flying from the seat of his pants.

I read about the 4000 lives patients killed each year by "inappropriate treatments", and have a gut feeling that SCRs with details of allergies and medication could be one of the ways to reduce this death toll. Surely it is worth a try. Again, I may be being hopelessly naive.

ah ... allergy recording ...

09 Mar 10 00:03

Allergy infrormation collected by healthcare professionals is in my experience extremely patchy (no pun intended) in the real-life NHS.

Favourite recent one (yes - true, and one of many!). Patient was asked on admission to hospital if he had any allergies. "Soap and water!" he replied jokingly.

This was duly recorded in huge red capital letters on the front of his notes, and solemnly intoned in theatre during the Darzi Surgical Pause.

So, sorry - but I will continue to take an allergy history from all my patients: sorry for the "duplication" but at least you are getting "better care" than if I relied on the records. And anybody who is unfortunate enough to have a truly life-threatening allergy I would encourage to wear a medicalert bracelet or necklace.

ah...allergy recording

rsarson@blueyonder.co.uk

09 Mar 10 12:03

Perhaps the discipline of knowing that it is important that allergy recording on SCRs should be accurate will make professional clinicians become less "patchy" about filling in their patients' records. So, there could be a beneficial unintended consequence of SCRs; more accuracy - and less sloppiness - will raise the game of clinicians, and make it less likely that I will become one of the 4000 unlucky patients to suffer from inappropriate treatments.

The last responder is of course right to chose between what is on the record and what the patient says, if he has doubts about what is on the record. What if the patient is unconscious? Isn't it then better to follow the record than just spin a coin?

I should add to my previous posting that if I had AIDS or if I were a celebrity on whose medical record the Press might feast, I would probably opt out. But I would not need an opt-out form to do it. Patients, particularly ones who have something nasty in the woodshed, are not stupid.

Consent/Opt out and medical record databases

10 Mar 10 11:03

Could the previous GP writers confirm what consent/opt out programme they used for their patients when they transfered their medical records onto a single database on a single server in their Practice. Furthermore (assuming some of the writers now use hosted clinical systems) when did their Patient Information Programmes take place for their patient to opt in/out of their records being held off site in server farms/enterprise servers, managed by clinical system suppliers - TPP, INPS, EMIS etc.

Strange how when someone has a dislike of something, or is told they are required to do something they don't want to do, hypocrisy creeps in!