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."
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