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Wednesday 20th June 2018

Opting-in to patient records?

4th July 2006

04072006_patientmedrecords1.jpgAlthough the potential benefits of sharing patient electronic records within health systems are generally agreed, concerns remain over patient consent and security, as discussed by experts in the BMJ.

The first main school of thought on this (the opt-out model) is for the public to be informed of the NHS care records service and to be given a chance to opt out if they do not want their clinical records shared within the NHS. The second school of thought (the opt-in model) is for no sharing to occur until people have expressed their desire to share their clinical records within the NHS.

Chief Executive of Wessex Local Medical Committees, Nigel Watson, has experienced an opt-out approach and he believes this is the way forward. Citing existing opt-out schemes that have been widely accepted by health professionals and the public, he points out that the health service in Alberta, Canada, changed from the opt-in position to an opt-out one in 2003 following consultation with both patients and clinicians.

He adds that in terms of security, access to a patient record in the repository requires a user name and password. User names are only issued to staff with confidentiality clauses in their employment contracts; before accessing the patient record the user is asked to confirm that the patient has given consent.

Mr Watson believes an opt-out model should be used for the NHS care record service, allowing patients to benefit from earlier availability of information, reducing the workload on hard pressed services, and cutting the bureaucracy for both practices and patients.

He stresses, however, the need for a large publicity campaign six months before the start of the service, informing patients what is going to happen, the potential benefits and dangers, and how they can opt out of having their records shared.

However the Chief Information Officer at Harvard Medical School, Dr John Halamka, argues that opting in is the only way to ensure confidentiality.

Discussing regional data sharing in the US he believes that patients are best served by prospectively seeking their permission to include data in the regional index. This approach acknowledges patient control and ownership of medical information.

Both opt-out and opt-in approaches have risks and benefits, he says. For example a key disadvantage of an opt-in system is that records populate the regional index slowly, making adoption of data sharing slow. Another is that a clinician may prescribe a drug that has an important interaction with the patient’s undisclosed mental health prescriptions.

With the opt-out approach, historical records could be used to populate the regional index rapidly; however information about all institutions, including mental health providers, could potentially be leaked. This may affect patient confidence in the system, since they did not prospectively approve participation.

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