Survey Challenges Compulsory Patient Data Sharing

A new survey by ICM research finds that 95% of patients said they would not allow civil servants access to their medical records without having been asked first.

The research, commissioned by the Patients Association, is published in the week the UK Government is expected to approve new laws that could provide the Secretary of State for Health with sweeping powers to access confidential patient information

New regulations on sharing patient data, which form section 64 of the Health and Social Care Act, are intended to benefit legitimate cancer and infectious disease research and health service planning, and make information sharing lawful for these purposes.

However, according to the Patients Association these provisions of section 3 are extended by the phrase "other risks to public health", which they suggest is an open ended option that allows the release of information about any disease, illness, lifestyle or individual.

The provisions are also said to allow for information to be released to persons who are employed or engaged by any Government department.

Under the proposed changes to the Health and Social Care Act, officials would be able to order doctors to pass medical records to the Department of Health.

The Patients Association claim that new regulations would provide the Secretary of State virtual "carte blanche" to access patient information. Under the new provisions the Secretary of State can mandate the person who lawfully holds the information to release it. This mandate is supported by enforcement powers in Section 8 including a fine of up to £5,000, to doctors or nurses who refuse to release information.

While 95% of patients surveyed said they would allow doctors and nurses directly involved in their care the right to access their records, only 31% said they would grant the right to medical researchers at teaching hospitals and a mere 4% said they would want civil servants to access their medical records without consent.

Simon Williams, Director of Policy with the Patients Association said: ‘Patients have spoken out loud and clear. What is private to them and their health professional must stay that way and only they should have the right to share it with others".

The Patients Association points out that following the Alder Hey inquiry — in which inappropriate assumptions about consent were made — the Health Secretary promised that informed consent would be a underpin the doctor-patient relationship.

And in a joint electronic letter in this week’s issue of the BMJ Fleur Fisher, Director of Healthcare Ethics UK, argues that the arguments against compulsion to release confidential personal medical information are compelling, both ethically and morally.

The letter notes: "Attention must also be paid to the Declaration of Helsinki. Clause 5 says that `In medical research on human subjects, considerations related to the well-being of the human subject should take precedence over the interests of science and society’."

Fisher, and her co-signatories conclude: "The case for making Britain an exception to universally accepted best practice has not been made; neither has the case for making cancer an exception to the rest of medical practice."