Wednesday, June 28, 2006

BMJ debate about consent and electronic health records

This weeks British Medical Journal (23rd June) contains 2 editorials, a For and Against piece and several "rapid feedbacks" which contribute to debates around the NHS national Programme for IT and specifically the opt-in v opt-out debates about the inclusion and sharing of information held within the electronic health record.

An editorial by Justin Keen "The NHS programme for information technology" describes it as a massive natural experiment which needs evaluating and regulating which comments on the recent report by the National Audit Office and suggests it is not surprising there are problems with identifying benefits from the programme and makes a strong case for taking advantage of the opportunity for the collection of observational evidence about the costs, risks, and benefits of large scale investments in information technology.

Another editorial by Ole Frithjof Northeim "Soft paternalism and the ethics of shared electronic patient records" considers whether it is ethically sound for patients to opt out. It uses examples of "soft paternalism" (accepting the default policy of "opt-out", preserves freedom of choice and promoted health and welfare for all.

A related "For and against" piece Patients should have to opt out of national electronic care records includes 3 short papers related to the opt out. Nigel Watson presents models of patient consent based on the Hampshire and Isle of Wight experience, concluding that "we should adopt an opt-out approach for contributing information to the NHS care record service but obtain consent, or have a legitimate clinical relationship with the patient, to access the clinical records. It will be essential, however, to have a large publicity campaign six months before the start of the service, detailing to patients what is going to happen, the potential benefits and dangers, and most importantly how they can opt out of having their records shared." John D Halamka presents an opposing view based on US experience suggesting the risk of opting out may be greater than the benefits. A patients perspective is offered by Jan Wilkinson who can't see what all the fuss is about.

The BMJ enables "rapid responses" which are also included on the web site - responses within the first few days included; The NHS Care Records Dilemma by Maureen A Orlando , Patient records, confidentiality and choice by Michael Foley and "Opt in" v. "Opt Out" by Paul Thornton - which are useful in progressing the debates.

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