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'We've tackled care record fears'

The Pulse Common Sense on IT campaign has highlighted fears over the confidentiality of care records. But Dr Gillian Braunold insists a series of safeguards puts patients firmly in control

The Pulse Common Sense on IT campaign has highlighted fears over the confidentiality of care records. But Dr Gillian Braunold insists a series of safeguards puts patients firmly in control

After all the discussions over the consent model for sharing records in the NHS Care Records Service, I think it is important to understand just how much change there has been over the past few months.

Following the ministerial taskforce recommendations in November 2006, Lord Warner, the minister responsible for the National Programme for IT at that time, said no patient should have a care record if they did not want one. The ability to say no to storing a record, which is incorporated into our work in the early adopter areas, adds extra choices and options for patients.

I would not be able to lead the Summary Care Record programme if I could not answer the following with confidence: Can patients refuse to have a summary? Yes! Can patients change their minds at any stage? Yes! Can patients limit what is shared? Yes!The Summary Care Record is designed to improve patient care by making essential clinical information available to all clinicians involved in a patient's care as they move across the health service.

A patient's care record will be made up of extracts from their usual clinical records made when they attend the health service. It is not the entire GP record, but essential elements that will help ensure safer care.

During 2007/8, early adopter areas are starting to populate patients' care records with limited but important clinical data from their GPs. Patients are informed about the coming changes and are given four months to find out more and decide the extent of their participation.

During this period, a practice's data is checked for quality and accuracy. Following the four-month period, practices will upload a list of recent drugs, allergies and adverse reactions. This will only apply to those who have not declined to store a care record. After this first upload, significant medical history and other key information will only be added after discussion with the patient and with their explicit consent.

Patients have a number of options over how their information should be stored and shared. They can decide whether or not to have an electronic care record and, if they decide to have one, whether or not it is shared. They can change their mind at any stage.

Patients have three choices once they are informed of the opportunities available to them. Patients with misgivings about the Summary Care Record can decide to have a record created but not to share it routinely – the amber box. Choosing this option gives maximum control to patients. They can view the care record themselves through HealthSpace and give consent for viewing by clinicians. Should a patient wish to allow a clinician to see their record they can ask that this consent exists only for that consultation.

Given this extension of patient choice, the old language of opt-out versus opt-in becomes no longer relevant.The consent model has been adapted over the months in response to the suggestions of GPs and patients, both in the early adopter areas and in professional stakeholder meetings. I firmly believe the model of patient consent and control we have adopted can have the full confidence of the profession.

Dr Gillian Braunold is clinical lead for the Summary Care Record early adopter programme

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