Medical Treatments

Patients Shouldn't Have Access to Their Electronic Records?

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Update 3 pm ET: Thanks to Gilles Frydman for pasting in, in a comment below, the BMA’s actual statement, which as he says isn’t nearly as paternalistic as I thought from reading the BMJ piece. Need to discuss how this happened.
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According to the British Medical Journal, the British Medical Association (BMA) has taken a big, paternalistic step backward regarding patient participation. Or perhaps it’s a step in the right direction, formalizing their position as embracing 20th century thought: they warn that it’s not wise to let patients see their records, doctors will be deluged with emails, etc.

The concerns are familiar but archaic. Kaiser has ten years of experience showing that email reduces the total number of patient touches, and besides, patients love being able to read and write 24/7; etc. Our co-founder Dr. Danny Sands said, “How can patients participate if they can’t see the same information?” And how are they supposed to participate in shared decision making?

It’s not sufficient to say “The doctor will tell the patient whatever they need to know.” The record shows that time-pressured physicians commonly do not. And as we’ve said many times, whose data is it, anyway? Whose health is it?

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You’re welcome to comment on the BMJ site. Anyone can submit a “rapid response” comment at this link. The online extract is here.

Note: the BMA was responding to an initiative described in the National Health Service’s white paper Equity and Excellence: Liberating the NHS (PDF, 339k), which we wrote about in November.

Full text of the article follows:

BMJ 2011; 342:d206 doi: 10.1136/bmj.d206 (Published 12 January 2011)
Cite this as: BMJ 2011; 342:d206

BMA warns against letting patients have access to their electronic records
Michael Cross

Plans for NHS patients in England to take control of their own medical records have received a cool reaction from the BMA.

The association’s response to the government’s vision of a computerised health service, set out in its paper Liberating the NHS: An Information Revolution (www.dh.gov.uk/en/Consultations/Liveconsultations/DH_120080), also warns of GPs being deluged with emails from patients.

The government’s paper, published last autumn, proposes a locally led strategy for computerising the NHS and for patients to have greater access to electronic information, including their own medical records.

In its 20 page response the BMA sounds a note of caution on the cost, likely benefits, and ethical acceptability of the plan.

Chaand Nagpaul, a GP and member of the BMA’s working party on information technology, said in a statement, “Improving NHS IT while the NHS is under huge financial pressure will be extremely challenging.

“While the principle of patients controlling aspects of their records is a good one, there must be safeguards to reduce the risks involved in sharing such sensitive data.”

The BMA’s response says that some information in health records may not be suitable for sharing with patients. It cites examples, such as reminders to doctors to look up the management of depression in pregnancy or the appearance of alarming terms such as multiple sclerosis. “Whilst patients may wish to have access to such information, it will require a change in practice,” it says.

Enabling patients to access their records “should be a gradual process” implemented in stages only after successful piloting, the BMA says. “There should only be investment in this area if evaluation provides evidence of patient demand and clear benefits.”

Privacy is another concern. “The one significant element which we feel is absent is confidentiality and the need to balance the benefits of new technologies with appropriate information governance models in order to protect patient data,” the response says. It warns that commercial online services and internet social networks may not be covered by UK or European Union laws on data protection.

Patients should also be better informed about secondary uses of data, for audit and research, and should be allowed to opt out of having identifiable data used for such uses.

While backing the coalition government’s emphasis on local choice of IT systems for NHS organisations, in contrast to the last government’s National Programme for IT, the BMA raises concerns about the cost of computerisation. IT systems have “significant implementation costs” and a “significant time lag” before any resulting savings appear.

The BMA is also concerned about the prospect of GPs communicating electronically with patients. Although this may have advantages, such as reducing patients’ temptation to seek advice and treatment from unregulated websites, potential dangers include the risk of missing symptoms that would be spotted in face to face consultations and the threat of “a deluge of communication” diverting clinicians from seeing patients.

“Electronic communication needs further piloting and should be introduced on a clinician voluntary basis,” the response says.

Consultation on the government’s white paper closed January 14. The Department of Health is expected to publish an information strategy by early summer.