Patients key to NPfIT fate

Joe Fernandez

Patients must exercise their right to choice and decide if they want their records fully uploaded onto the spine, BMA chairman, James Johnson, has told E-Health Insider in an exclusive interview.

Mr Johnson was a member of the Ministerial Taskforce on the Summary Care Record which dealt with over 20 potential issues in the implementation of the Summary Records scheme where a deal was “hammered out to get a show on the road.”

The BMA wanted the government to create an opt-in system, as opposed to the opt-out system that is being delivered, and now Mr Johnson is calling on patients to make their opinions known once pilots of the project begin in six primary care trusts.

“The opt-in/opt-out argument proved difficult and controversial and so we hope the pilots appear to be not so controversial. What patients need to understand is that sensitive data going in is very minimal. At this stage the only clinical data being entered is current prescriptions a patient is receiving and any known allergies.

“The bottom line is that this is an opt-out system and we wanted an opt-in system. These pilots will give patients a defined period of time to go to their GPs and view either their electronic records or their paper records and see what will be loaded onto the spine. If they don’t want data to go up, then they can ask for it not to be stored and it will not go up at all. Patients voicing their opinions is pretty crucial.”

Mr Johnson believes that the only way of identifying whether patients and GP concerns were right is to monitor the pilot sites and for issues to be brought to Connecting for Health’s (CfH’s) attention.

“In reaching a decision as a taskforce, we made a classic British compromise. We still believe that patients should have choice. Personally, I think it’s very possible that a patient’s historical data will never go on to the database and I suspect that the summary records will only begin form a particular point of time – but we can’t just assume these things. Patients must have a choice in the matter.”

He told EHI that he will continue to campaign to see an opt-in campaign where patients agree to what data goes up and when.

“We believe that there should be an opt-in every time new information is put into a patient’s record. A patient should be able to see their records each time they are treated and should have their views put into the record if they do not agree with what has been entered onto their file.

“This is also important for patients who register with the HealthSpace website. Patients need to know that what is uploaded is agreed by them. For instance, if a woman had an abortion 20 years ago and didn’t want her husband to know, but her husband knew her log-on information in case of emergency. Unfortunately, at the moment the DH says it’s not practical.”

Mr Johnson added that GPs face “considerable pressure” to keep their patient-doctor relationship and would be forced to make judgement calls as to the nature of the records saved on the spine.

“It is perfectly reasonable for a patient to expect some form of confidentiality between themselves and their GP and it then becomes a pressure to the GP as guardian to the patients as to what they actually enter onto the electronic record. Patients want things kept ‘secret’ but it could affect their health if it remains so. Ultimately, there has to be some subjects of [that] data that have to be shared.”

He re-iterated the fact that plans for ‘sealed envelopes’ to restrict sharing of such data would not be in place for the pilots and are not likely to become available until 2008/9 and procedures would need to be in place before this.

“The BMA’s policy is that explicit consent should be obtained before any healthcare information is uploaded onto the spine.”

A visit to the see the IT system used by the Veterans Administration in the US was an indicator of the later advantages for the ministerial taskforce, Mr Johnson said.

The VA system is the ‘largest enterprise-wide health information system’ and includes a computerised patient record system for all VA centres.

“The VA was interesting for us in that, for such a large system, they did not experience any of the problems we have encountered here. They simply amalgamated databases together and created one large database of patient records.

“Patients and doctors cannot change data, but they can make amendment notes. Erasing a record is not possible, but a patient can ask to have their views added if they dispute any details in their records.”

He feels that one of the key reasons why the National Programme for IT is suffering is because doctors have not been involved in local implementations of systems and so once deployed, a number of clinical errors are found.

“The idea that every doctor on the shop floor will see the system and begin using it as normal is just pie in the sky! I’ve always maintained with CfH that if you have doctors on board, it would be easier to counter a lot of the negative press and so on.

“I believe that they should have brought doctors and clinicians in from the start, they have now included some doctors and clinicians, who are enthused with the systems, but for many the delays are just too long.”

Mr Johnson particularly emphasised with hospitals that are under pressure to meet targets, but are struggling without a new system.

“It is particularly difficult in hospitals where if systems are on the verge of being completely unusable, then consultants are left wondering what do you do?… Once the systems are all in place and doctors can see the benefits it will be fine, but right now it’s just a great big pain in the neck.”

Asked whether the project would be worth the price tag upon completion, Mr Johnson wasn’t sure.

“Productivity is an issue. Only time will tell. If it does prove to be the system it has been promoted as, I imagine the cost will be quiet quickly forgotten. Otherwise, it will be a national scandal. Predicting the future is tricky – I hope it works but in the end only time will tell.”

Part 2 of E-Health Insider’s exclusive interview with Mr James Johnson will be published next week.