New twist in medical records opt-out saga

The government ‘does not envisage any circumstances’ where a patient’s decision to have some or all of their health record deleted would lead to them being de-registered from the NHS, the Commons heard in a debate on medical records.

Wycombe MP, Paul Goodman raised the issue in an adjournment debate focused on the case of his constituent, NHS practice manager, Helen Wilkinson. She concluded, after lengthy correspondence with the Department of Health, that the only way to opt out from having her personal health information kept on the NHS-Wide Clearing Service and on the future databases of the NHS Care Record Service was to opt out of NHS treatment.

Responding to Goodman’s questioning about the case, health minister, Caroline Flint said: “We recognise that there will be some people—Ms Wilkinson is, I think, the first, but no doubt there will be others—who feel so strongly about what they see as threats to the confidentiality of their personal health information that they will seek to remove any possibility of this information being shared within the NHS.

“Let me make it clear, however, that we do not envisage any circumstances in which patients who choose to have some or all of their records deleted will be ‘deregistered’ from the NHS or otherwise denied NHS care against their wishes.”

The statement apparently flies in the face of the previous understanding about the right to prevent personal health information being recorded; this was that a patient had to prove on a case-by-case basis that the recording of information would cause them substantial damage or distress.

Flint warned, however, the NHS could not deliver the benefits of a joined-up electronic record system to the people who opted out. Later in her speech she also said that opting out of recording would prevent the NHS from learning and improving on how it manages the care of others with similar conditions.

The other issue raised in the debate concerned the right to have incorrect entries on a record amended. Wilkinson discovered in the course of her investigations that her record contained a coding error which wrongly showed her as having attended an alcohol advisory service. There appeared to be no way to correct this as the information had been widely distributed.

Flint said that the error had been corrected and indeed, Wilkinson’s records had been expunged from the NHS databases, as she requested, though Flint added: “We have reservations about the consequences of doing so.”

She said: “The right to have inaccurate data rectified or erased, or to have any concerns about the processing of data seriously considered, is enshrined in statute. We are currently considering how such concerns can be practically addressed.

“We recognise that a transparent process needs to be established for people with concerns, and clear and applicable criteria for dealing with requests. It is not a simple matter, as there are significant medico-legal implications in deleting health information, even where it is incorrect, if someone has relied on it to make a decision.

“Part of the reason for that, as I am sure the hon. Gentleman [Goodman] will understand, is to protect the patient from people who might want to change records that could have implications in the future if the patient wanted to complain about their treatment or about how they were treated in the health service.

Links

Hansard report of the debate: “Medical records and the case of Helen Wilkinson”

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