22 – Respect for privacy


In 2013, a new modern data service was commissioned on behalf of the entire health and social care system. General Practitioners who are responsible for primary healthcare have been asked to create a summary of patient’s medical notes and to upload them to a centralised IT system. This is the General Practice Extraction Service (GPES). Information will not be anonymous when it leaves the GP’s surgery; it will be extracted with the patients’ personal details still attached. 12-16 weeks before a patient’s details are due to be uploaded they receive a letter about this, and if they do not respond in time, it is assumed they have given their consent. It is likely that many disabled people will not receive such a communication in a format accessible to them and thus they will not have an effective right to opt out.

In the UK 55 organisations are accredited to apply for identifiable or sensitive data and they can apply for information from this new General Practice Extraction Service (GPES). The contract to deliver and service the £8m five-year the General Practice Extraction Service (GPES) has been granted to Atos, the firm which also has the contract for the Work Capability Assessment programme of disabled people in the UK, which gives it access to their confidential medical records. Private companies and researchers will be able to access data from GP records for £1[1].

Respect for the privacy of disabled people is threatened by the potential sale of confidential medical information to private insurers. It could have implications on the costs of healthcare and the employability of disabled people if this information was purchased by private insurance companies or private medical trusts which have financial interests in reducing the healthcare bill and boosting their profits.

A failure to ensure that adequate numbers of professional BSL interpreters are provided often leads to breaches of the right to privacy of sign language users. This occurs through family members being used to convey personal confidential health or financial information which in general the family members of a non-disabled person would not have access to without that person’s explicit consent.

[1] http://www.pulsetoday.co.uk/your-practice/practice-topics/it/private-companies-set-for-access-to-patient-data-for-just-1/1/20003879.article?&PageNo=3&SortOrder=dateadded&PageSize=10#.U3NrIoFdUn0