The Royal College of GPs (RCGP) are warning of a “crisis of public confidence” in an NHS scheme set up to share details from people’s medical records. The group supports the plan in principle but said it was “very worried” the public had not been properly informed.
The idea of the scheme is to link data from GP records with information from hospitals to give an idea of what happens to patients along the way. The data being extracted from GP systems includes things such as family history, vaccinations, referrals for treatment, any diagnoses and information about prescriptions. It can also include biological values such as a patient’s blood pressure, body mass index and cholesterol levels.
Personal confidential data identifiers will also be included such as date of birth, postcode, NHS number and gender. These are needed to link the GP data with other information obtained in hospitals. The written notes a GP makes during a consultation will not be included in the information, which will be held centrally by the NHS Health and Social Care Information Centre (HSCIC).
There has been huge criticism of the Care.data system, which is being established to aid medical research and monitor NHS performance more closely. RCGP honorary secretary Professor Nigel Mathers said, “we are very concerned that, with just seven weeks to go before the national roll-out, the public have not been properly informed about the benefits of and the safeguards surrounding the Care.data programme. The inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing.We urgently need a renewed national push by the authorities to ensure that patients are fully informed, in clear terms, about the benefits of the scheme, what their rights are, and what their rights to opt out are.”
Campaigners have warned there could be breaches of privacy under the new system, while Healthwatch England has said NHS England’s patient information leaflet is confusing.
There is also a proposal being discussed next month, which could give non-NHS bodies, including private firms and pharmaceutical companies, access to the data. Later this year, once a single English database of medical data has been created, drug and insurance companies will be able to buy information on patients including mental health conditions and diseases such as cancer, as well as smoking and drinking habits.
Professor Mathers said many GPs “remain uncertain” about the safeguards that will apply. He said, “the college remains supportive of the Care.data initiative in principle, as we believe that it will help the NHS improve the quality of care for patients and to better prepare for outbreaks of infectious disease such as flu. However we urgently need reassurance about what plans are being made to address current GP and public concerns to restore public confidence in the scheme. The Government and NHS England need to act immediately, otherwise further questions will inevitably be asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed. It would be a tragedy if something that could have enormous benefits for patient care falls at the first hurdle because of a failure of communication.”