SHA overwhelmed by public response to EHR consent

A senior member of a strategic health authority with a new interim electronic record system has told delegates at the Healthcare Computing 2006 conference that there was such an enormous public response to a mailshot detailing their rights to opt-out that they had to take on extra staff.

Anne Reed, clinical data repository manager at Hampshire and Isle of Wight SHA, said that over 4,000 calls were received after every household in the area was informed by post that electronic health records would be implemented.

"We expected it to be reasonably busy," explained Reed. "The public read it in the morning, and it was red hot."

The public were told that they could view their own records and opt-out entirely of having their records stored on the system, a central repository composed of existing GP and hospital records.

They were also told that in order to allow clinical staff to view the entries on the record, they could give consent for one view at a time only, or ongoing consent for up to one year, which would be appropriate for patients who had longer-term conditions.

Out of the 1.5 million in the area covered by Hampshire and IOW SHA, 1500 people asked to see their own health records, and 1250 requested to opt-out of the system entirely.

Local media had also been informed of the change and that patients could view their own records. "We did try and send this out to radio and TV but they didn’t put anything out for us," said Reed.

The interim system was developed last year and is still in what the SHA calls "a pre go-live state". There are 600,000 records currently held on it, covering 76 of the 236 GP practices in the area. A total of 98 million entries are in the database.

Before the upload took place, Hampshire and Isle of Wight SHA decided to write to everybody in the area after discussions with local medical professionals and the British Medical Association, General Medical Council and the Local Medical Committee.

They agreed that as long as they did a publicity campaign "we could upload the data without explicit consent." The households were informed of the change by post as this was one of the ways, it is believed, that the National Programme for IT is intending to inform the public.

To opt-out of the system, patients must sign a form and confirm their details and that they understand what they are doing. A block is then put on the system of their GP so that the clinical details of their records are not transferred to the central repository.

Reed stressed both to delegates and in the public mailshot that the electronic record system the SHA was putting in place was only an interim solution until the National Programme for IT delivered the same functionality. "When Hampshire and Isle of Wight can get the same level of clinical information from the national programme, it will be turned off. This is an interim solution."

She said that the record system, even in the pre-go live state, had already had a positive impact. "The main benefit is for out of hours care and A&E."

Emergency consent to see records can be obtained under the system if the patient’s condition is "life-threatening". However, a reason must be recorded, it is checked, and if it isn’t valid the case is forwarded to the Caldicott Guardian.

Reed told E-Health Insider that her top piece of advice for any other SHA planning on telling the public about electronic health records was preparation. "Make sure you have got enough people to man the phones. It will be absolute chaos… we just had reams of names of people to call back. We had the whole office literally ringing."

Reed added she had arranged phone scripts so that everybody calling in would get a consistent message, and that other organisations would be wise to do the same.

The SHA is now getting an average of two or three calls from the public every day, based on leaflets left in GP surgeries and information on their website.