The BMA has warned the Government that ‘they must ensure patient confidentiality is protected’ in light of the Prime Minister’s announcement that patient records will be made available to the life sciences industry for research purposes.
David Cameron explained this week that ‘it’s a waste to have the NHS and not do anything with the data’ but assured the public that any records would remain anonymous, claiming ‘this doesn’t threaten privacy’ and patients could opt out of having their data shared.
The controversial move to release individual, as opposed to aggregated patient data, is ‘crucial for a greater understanding of which healthcare interventions work, when and why’ according to the Government.
The NHS Health and Social Care Information Centre will set up a ‘secure data linkage service’ by September 2012, which will provide patient data extracts to life sciences businesses using ‘linked data from primary and secondary care and other sources on a routine basis at an unidentifiable, individual level’.
Patients will also have access to their GP records by 2015, with details of the full timetable to be published by September 2012.
Mr Cameron said: ‘We can be proud of our past – but we cannot be complacent about our future. The industry is changing; not just year by year, but month by month. We must ensure that the UK stays ahead.’
The Department of Health plans to announce a consultation to change the NHS Constitution so that patient data is automatically included in clinical research, but giving patients a clear opportunity to opt-out ‘if they wish to do so’.
Health secretary, Andrew Lansley, said: ‘What we are talking about is not patients’ individual medical records. What we’re talking about is linking up all the data sets across the NHS to create what is population-based data about the success of new treatments across the NHS and the ability to link up research data with the data about how patients are responding in research trials’.
But the BMA raised concerns over patient confidentiality. Dr Vivienne Nathanson, head of science and ethics at the BMA said: ‘Whilst the BMA does believe the use of anonymised health data could benefit patients, we are concerned that elements of the Government’s proposals could, if implemented, undermine patient confidentiality.’
She said: ‘We are especially worried by recommendations that would grant researchers, possibly from large commercial companies rather than the patient’s healthcare team, access to patient records. This could mean that details of an individual’s health status and treatment will be revealed if researchers are able to search through records and identify patients in order to contact them’.
In response, a Department of Health spokesman said: ‘The data will be stored electronically and linked when required to meet a specific health question. This means the data the researcher receives will be only that is relevant to the research’.
The private sector will have to pay to access the records, the Department of Health confirmed to Pulse, stating that ‘the fees and access agreements are yet to be agreed. We are working with the industry, academia, third sector and the public sector to agree a common fee structure’. Although any charge will only be to cover costs to the NHS.