Medical records and the case of Helen Wilkinson, who tried unsuccessfully to opt out of centrally-stored NHS electronic recording, will be the subject of a debate in the House of Commons on 16 June.
Wilkinson’s MP, Paul Goodman, Conservative member for Wycombe, Buckinghamshire, has gained a slot in the weekly schedule of adjournment debates, which enable MPs to air issues of public concern or matters raised by their constituents.
Wilkinson’s case came to light in March this year when exhaustive correspondence between Goodman and the then health minister, John Hutton, ended with Wilkinson deciding to opt out of NHS care because she did not want her care records kept on a centralised system. Hutton expressed regret that it had not been possible to find a way for her to remain an NHS patient.
Wilkinson, who works in the NHS as a practice manager in West London, gave E-Health Insider a full account of her quest to stop information being recorded about her on the NHS-Wide Clearing Service (NWCS) and her particular efforts to remove a mistake she found on her records.
"I discovered that, without my consent, every hospital procedure I had had done had been sent to a private company in Warwick, McKesson. I discovered I had been put down as attending an alcohol advisory service. They mixed it up with a surgical procedure," she said.
Goodman told E-Health Insider that he would be seeking to balance the details of the case with the wider issues raised.
"It seems to me the most important of these wider issues is whether the information you give as confidential, stays confidential, and whether you have got the right to know who has been looking at it," he said.
The legal position appears to be that patients can opt out of having their health information recorded electronically or manually, but only if they can show they will suffer substantial damage or distress by having particular notes included in their record. In addition they have to make an application to opt out every time they wish to withhold information from their record – no single opt-out is possible.
Clinicians also have a legal and professional obligation to keep accurate records of their consultations with patients.
Since the case came to light, a Care Record Guarantee has been published by the Department of Health. The Care Record Development Board (CRDB), which is responsible for the guarantee, is consulting on the content of local records and electronic summary records to be held centrally and accessed by authorised NHS staff through the national data spine.
The CRDB is recommending that patients should not be able to opt out of having their information recorded.
Sharing information is treated differently. The Care Record Guarantee lists 12 commitments, two of which concern sharing information. The first says that if information about a patient is shared within the NHS, the recipients of the information will be bound by confidentiality and given only as much detail as they need to play their part in the patient’s care.
The second commitment says that if information about a patient goes outside the NHS, the patient will be asked to give specific permission for this to happen, except in circumstances where disclosure is required by law or where failing to share the information could put someone else at risk.
The second issue Wilkinson raised about correcting wrong information should be resolvable under NHS systems and Hutton agreed in the course of a radio interview to look into the failure to correct the false information on Wilkinson’s records. The Care Record Guarantee says factual mistakes will normally be corrected.
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