BMA and CfH argue it out over NPfIT Summary Care Records

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        Would Summary Care Records have saved the life of Penny Campbell?

[Comments 5 and 6 after this article correct some of the impressions I have given. The SCR is equipped to take GP notes]  

It's rare for the British Medical Association and NHS Connecting for Health to debate the Summary Care Records. Their representatives did so on BBC R4's Today programme this morning.

A transcript is below.

Dr Hamish Meldrum of the BMA, and Dr Simon Eccles of NHS Connecting for Health, made their points with impressive force.

The strongest single point was made at the end by Simon Eccles who suggested that the death of journalist Penny Campbell could have been avoided had a succession of out-of-hours doctors been able to see the notes of each of the doctors who had seen her before.

But would the Summary Care Records really have made any difference? Eccles's point supposes:

- that each out-of-hour doctor who saw Campbell would have had real-time access to the SCR while they were with the patient, as opposed to looking at it before or the next day

- that each doctor would have recorded on the SCR what actions they had taken in real-time, or within an hour of seeing the patient

- that each doctor could have recorded their thoughts on what was wrong with Campbell. The SCR is not yet for notes - it's a record of medications, adverse drug reactions and allergies.

The death of Penny Campbell was characterized by a series of doctors not noticing, acting on, or understanding, a trajectory of different and complex symptoms.

Each of her calls to doctors was treated as an individual "episode", with Campbell having to repeatedly recount her symptoms. The SCR is not yet geared for recording symptoms.

The SCR could have helped - but her records would have needed real-time updating of notes by every doctor she saw.

And this is not happening under the national SCR scheme that's now being rolled out. 

**

This is what Hamish Meldrum and Simon Eccles said on the Today programme this morning.
Today's presenter Evan Davis asked the questions. He asked Eccles three times how many people would have access to his records.  

Meldrum: "We are worried at the speed at which this particular aspect of the programme is being rolled out. As everybody knows there have been delays and lots of cost over-runs in the whole NHS IT system. But there's a difference between the time it has taken to develop and evaluate the system and actually rushing out what we still feel is an imperfect  system.

Evan Davis: The idea is that patients should have the right to opt out if they don't want their record put onto the central database. And you're saying people are not aware of that right?

Meldrum: "Certainly the feedback we're getting from doctors on the ground is that neither they nor their patients feel that they have been fully informed about what their choices are. ...If they do wish to opt out they don't find the process for doing that a very easy one."

Evan Davis [to Simon Eccles]: How many people will have access to my summary care record? How many people will be able to, if they want to, go and look at it?

Eccles: "In order to get access to the SCR, any healthcare professional needs a chip-and-pin access smartcard, and needs a relationship with you. You need to be their patient. So if you come into my A&E dept I can look at your record."

Davis: But physically how many people would be able to look at my record? How does the system know that they have a relationship with me? What's the security?

Eccles: "We are trying to make the system much more secure than current paper records. At the moment there is no audit trail of who has looked at your records. What we are saying is we want a full audit trail. So if somebody chooses to access your record then they have to leave their fingerprints."

Davis: But how many people will be able to go and look at that record? At a hospital in Newcastle somebody could find my record and actually look at it couldn't they?

Eccles: "Absolutely right. An A&E consultant in Newcastle could find out what medicines you are on."

Davis:  So basically thousands and thousands of people would be able to look at an individual record?

Eccles: (in a near whisper) "As they can now."

Davis: At the moment, someone in Newcastle is going to struggle to look at my paper record aren't they, because they are quite a long way away from it and going into it and shuffling around in the files at my local GP is going to be a bit of a hassle for them?

Eccles: "The concerns we get - I am an A&E consultant when I am not here doing this - is from people who complain not about too much information but about the fact that we don't join it together. They are astonished that I have to ask them all the medicines they are on, and doses, and particularly preparation, because we haven't got a list of the medicines they are taking from their GPs."

Davis [to Meldrum]: Can't we trust doctors not to peek at the data - that we shouldn't let them access to the data because they'll misuse it if we let them?

Meldrum: "We are not against the SCR per se. We believe in the long run it will have benefits for patients. But it will only work if doctors and patients have confidence in the system.

"And there are patients who have strong views about their details being shared and will not want them shared.

"We are saying that we must make sure that these views are respected, that patients are making fully-informed decisions, and that they have the opportunity, when they don't want the potential for that record-sharing to happen, for them to do so.

"It's a matter of the speed and the scale of the roll-out at the moment. The information we feel is not getting to patients so that they can make that fully-informed decision.

Davis: What do you say to the point, though, that we do need, even in the cases where patients may not want their data shared, we have to have some way in a doctor, say in A&E in a remote city, can get access to their data?

Meldrum:  "We have coped up until now without an electronic record. We feel that the electronic record will help this process. It's not impossible to treat patients without these data.

"We are stressing that this system will only work with the confidence of patients and with the confidence of doctors. We are not against the system per se. What we are against is the processes being used for accelerating this roll-out which we are getting feedback is not being properly done."

Eccles: "There have been high-profile deaths, including Penny Campbell's, a journalist's wife, who died because five different GPs saw her and none of them knew what each other had done.

"It is incredibly important, that where people want it, they are able to share information that will save their lives because the clinicians will know what is wrong with them. That is common sense." 

Links:

The death of Penny Campbell by her partner of 19 years - The Independent

Is roll-out of Summary Care Records speeding up while doctors urge caution? - IT Projects Blog

Is the NHS rushing out an imperfect system? - BBC Today programme

BMA branch withdraws support for fast roll-out of Summary Care Records - ComputerWeekly.com

NHS spine can tap easily into GP records - U.K. News Room

Is Summary Care Records scheme feasible? - IT Projects Blog

When is an optional opt-out not an option? - Big Brother Watch

Doctors call for database rollout suspension - Emergency Services News


6 Comments

  • There is currently a permission on the Number 10 petitions website demanding the Goverment review it's outdated IT project management processes in favour of a more agile and incremental approach. It has been signed by many of the most influential software developers working in the UK today.

    If you agree and are tired of your money being needlessly wasted please sign:

    http://petitions.number10.gov.uk/ITProcessReview/

  • Your point about the implied actions of doctors in the Penny Campbell case is a strong one. Here is another tragic case (http://www.lindermyers.co.uk/article.asp?id=236). The patient:

    ".. had previously given a verbal warning to her treating doctor that she was allergic to Penicillin. This important fact was also written in her hospital records prior to the drug being administered and, further, she was wearing a bright red allergy band on her wrist at the time the Magnapen was administered"

    I doubt very much whether a database record would have saved this woman.

    It is a commonplace amongst software suppliers and developers that if processes lead to errors, supplying a "computer solution" to the problems will just mean that the errors get made more quickly, and possibly more comprehensively.

    Rolling out the technology is only a part of the whole culture change that is necessary: are all the other essential actions keeping up?

  • Simon Eccles is Medical Director of Connecting for Health.

    He is also non-executive director of Zircadian, a private IT company which sells software and IT solutions to the NHS.

  • Thank you. I have asked the DH for a comment.

    I note that Zircadian says of Simon Eccles:

    Dr Simon Eccles
    Non-Executive Director

    Simon became Non-executive Director of Zircadian in August 2008. He is Medical Director for the National Programme for IT in the NHS, as well as a Consultant in Emergency Medicine at Homerton University Hospital in London; Clinical Advisor to the NHS National Workforce Project (tackling the impact of the European Working Time Directive in 2009), and Medical Advisor to the Hospital at Night project which is now being implemented nationally.

    Simon is interested in plain-speaking communication; making sure clinicians, managers and planners are all using the same routine information to improve care for patients, and in helping clinicians have ownership of improvements brought about by better health informatics.

  • In order to clarify some errors in the original report.....

    - that each out-of-hour doctor who saw Campbell would have had real-time access to the SCR while they were with the patient, as opposed to looking at it before or the next day
    THIS IS EXACTLY WHAT THE SCR DOES. IT IS UPDATED IN REAL TIME. IT IS VIEWED BY THE CLINICAL PERSON WHEN THEY ARE WITH THE PATIENT (WHICH IS PRETTY MUCH THE ROUTINE WAY IT HAS TO WORK AS THEY HAVE TO ASK THE PATIENTS PERMISSION BEFORE CAN THEY VIEW IT)

    - that each doctor would have recorded on the SCR what actions they had taken in real-time, or within an hour of seeing the patient
    FOR NORMAL GP'S THIS WOULD HAPPEN NOW IF THEY HAD SCR ON THEIR SYSTEM. FOR THE OUT OF HOURS GP'S, IT IS SOMETHING THAT THEY WILL BE ABLE TO DO WITHIN THE NEXT YEAR

    - that each doctor could have recorded their thoughts on what was wrong with Campbell. The SCR is not yet for notes - it's a record of medications, adverse drug reactions and allergies. ACTUALLY, THE SCR IS READY FOR NOTES, DIAGNOSES (OR SUSPECTED), CARE PLANS, TEST RESULTS - ANY CLINICAL INFORMATION WHICH WOULD BENEFIT THE PATIENT FROM BEING SHARED WITH OTHER RELEVANT CARE STAFF INVOLVED IN THEIR CARE.

  • Catherine - Thank you. I stand corrected.

    A GP who knows a great deal about the SCR says that the word "summary" is misleading. He adds:

    "The SCR database will be populated initially with significant past medical history, current medications and known allergies.

    "Thereafter it is designed to be, and is, capable of taking anything and everything, as a copy, of what is subsequently recorded by clinicians in detailed care record systems (if compatible) at the conclusion of the note writing.

    "Exactly what information is transferred will be for the clinician to decide.

    "The guidance is that patient consent should be obtained for each of these data transfers to the SCR.

    "The potential for information overload is huge so that its value as a "summary" will degrade.

    "The privacy implications are correspondingly magnified.

    "It would have been far better to develop messaging systems which "push" new information only to clinical departments who are known to be involved in the patient's care, or who are very likely to become so e.g. the local out of hours service.

    "Placing huge amounts of information about everyone, which can be "pulled" by staff everywhere, is the irreconcilable security and civil liberties danger."

    **

    On the Penny Campbell case the GP says:

    "The problem with the Penny Campbell case, as I understand it, was that the care records in the local out of hours (OOH) service (Camidoc) did not reveal to successive doctors working in the same out of hours service that she had been contacted previously - let alone the records of those contacts.

    "It's an obvious shortfall in the local OOH service systems that should have been corrected before they started handling phone calls from different sites.

    There is no mention of IT issues in the PCT recommendations

    http://www.enfieldpct.nhs.uk/foi/foi_docs/6227_revised_board%20report%20fina
    l.doc

    Nor is IT the fundamental flaw in this account from her partner. The partner and the patient were quite capable of providing the information that would have been in the SCR WRT her operation, had they been asked.

    http://www.independent.co.uk/life-style/health-and-families/health-news/deat
    h-at-the-hands-of-the-nhs-the-tragedy-of-penny-campbell-419460.html

    Trying to justify a "national" database on the basis of this tragic case is spurious.

    It is likely that most doctors will function defensively and transfer everything they record in the detailed record on to the summary care record - if it is easily done.

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