Amidst concerns about the confidentiality of their medical records, Alex Cunningham has reassured constituents that they have the right to opt out of “care.data” should they so wish.
The initiative, which follows changes brought about by the Health and Social Care Act, will make increased use of information from medical records with the intention of improving health services for patients. The system is being delivered by the Health and Social Care Information Centre (HSCIC) and NHS England.
Patients’ records, after being uploaded in identifiable form to HSCIC systems, will be made available from March 2014 to local Clinical Commissioning Groups for administrative purposes, as well as to researchers and private companies. The NHS will then use this data to build a fuller picture of what is happening across health and social care and to plan services accordingly.
But Stockton North’s Labour Member of Parliament has recognised that many patients feel uncomfortable at the prospect of personal data, which includes identifiers such as NHS Number and date of birth, being shared in such a way along with details of diagnoses and treatments, and lifestyle information about factors such as obesity or smoking.
“It is understandable that people feel uneasy at the prospect of details of their personal medical history being stored by the HSCIC and shared with third parties. Patients have the right to know that such information will be treated with the utmost confidence and it is important that people understand that they are not obliged to take part if they don’t want to.
“While the new system aims to enhance the sharing of joined-up information from all of the different parts of the health service to make improvements to care, and third parties will have to sign agreements that they will not attempt to re-identify patients from the data provided, it is vital that patients retain control of who is able to access their information. This is why the opt-out option is so important.
“Anyone wishing to opt out of the initiative can talk to a member of staff at their GP’s practice and request that information is not shared. This will be noted on medical records and prevent information being used other than where necessary by law, such as in case of a public health emergency.
“It is also important to recognise that care.data is not the same as the Summary Care Record, and patients must opt out of both if they do not want their information to leave their GP’s surgery.”