GPs fear dangers of opening electronic care records to researchers will outweigh benefits
The benefits of opening electronic care records to researchers will be outweighed by the harm to patients' health if they begin holding back information from their GPs, the Government has been warned.
Dr Paul Thornton, a GP in Kingsbury in Warwickshire, said allowing researchers access to records without seeking specific consent would backfire.
'Unless the patient is given a genuine right to opt out of having their information released beyond their comfort zone, then they will withhold information from clinicians, which is going to be detrimental to their clinical care and also to the quality of the research,' he warned.
A veteran campaigner on IT issues, Dr Thornton admitted that seeking patient consent could skew research results, but insisted that 'the patient needs to have final control over whether information is divulged'.
'It's still a step that needs to be taken because you're more likely to generate trust, which is more likely to lead to divulging of more accurate information,' he said.
'The situation is fairly similar to the Alder Hey situation where body tissues were removed. If most people had had it explained to them and consent given, then most people would have been happy with it – but it was the fact that it was done without their knowledge.'
Both GPs and IT experts have previously expressed concern that using electronic records that have not been fully anonymised for research could breach patient confidentiality.
Last month Robert Navarro, a pseudonymisation expert and key NHS IT supplier, warned that pseudonymised records shared with researchers outside the NHS could be vulnerable to so-called 'inference attacks', – although he stressed that security arrangements were sufficient to cope with current sharing arrangements.'
The safeguards may well be legitimate and effective,' said Dr Thornton. 'But it's not us who has to be convinced – it's the patient.'