Jeremy Hunt today promised patients would be able to opt out of the health record sharing scheme he has set up as part of reforms to the NHS.
The declaration was made in response to the Caldicott Review published this morning, which was led by Dame Fiona Caldicott – previous lead on the review into the use of patient identifiable data in 1996 – looking into balancing the need to share information between health organisations and privacy of patients.
Hunt’s plan has established the Health and Social Care Information Centre (HSCIC) – a central body which will collect and hold medical records of patients on cloud-based systems, which eventually will then be made accessible to hospitals, GPs and other trusted health and social groups.
This will coincide with the health secretary’s pledge to make electronic medical records available to all by 2015, as well as his call for a paperless NHS by 2018.
Hunt believes these measures will allow for better patient care, compared with the current IT systems which are often siloed and replicated, as well as the paper-based records which sees large files having to follow patients wherever they go.
However, privacy groups have opposed the move due to concerns about whose hands patient data will get into, without prior consent of the individual.
Although broadly supportive of the plans, Dame Caldicott shared concerns about confidentiality and said patients should be allowed to decide whether their information is shared or not.
“[This report] makes a recommendation urging all organisations in the health and social care system to explain to patients and the public how the personal information they collect could be used in de-identified form for research and other purposes,” read the review. “Such explanations should mention what rights the individual may have to refuse to give their consent.
“When people give, refuse or withdraw explicit consent, these decisions should be traceable and communicated to others involved in the individual’s direct care. Patients can change their consent at any time.”
Although not what Hunt had originally intended for the project, he conceded his position and said during a speech at the launch of the review: “The Caldicott Review has been about striking the right balance between sharing people’s health and care information to improve services and develop new treatments while respecting the privacy and wishes of the patient.
“If patients are to see the benefits of these changes we must respect the wishes of the small number of people who would prefer not to share this information. I firmly believe that technology can transform the quality of healthcare in this country, but we must always respect the fact that this is very personal information about an individual.”
Hunt announced Dame Caldicott has also been appointed to chair an independent panel for overseeing the implementation of her report’s recommendations.