Research giants plead the case for access to patient records
By Nigel Praities
Top researchers have warned moves to restrict their access to medical record data will damage patient care.
Heads of some of the most influential research organisations in the UK warned paranoia over the safety of public information would result in British patients not having access to treatments from clinical trials.
The claims came after the Government scrapped a key pledge to grant researchers the right to access identifiable medical records without patient consent in the NHS Constitution, after an uproar among GPs.
The academics said it was essential that they could access patient data to select participants for clinical trials without having to seek consent first and suggested ‘safe havens' were set up so they could access anonymous patient data.
Sir Mark Walport, director of the world's largest medical research charity – the Wellcome Trust – said the NHS Constitution was ‘going in the right direction' but Government was dithering over allowing access to anonymous patient data
‘It is becoming harder and harder to do research that was previously easy to do. If you actually explain to patients about how their data is going to be used, then they are happy for it to be used,' he said.
Sir Mark said concern over high profile data leaks from government agencies was distorting the argument: ‘None of these were related to medical research – not one.'
Professor Peter Weissberg, medical director of the British Heart Foundation, said patients could access ‘gold standard' treatment in clinical trials, but this was being put at risk by Government moves to restrict access to medical records.
‘We run the risk of unpicking everything that we have done before, and we may not be able to do landmark studies such as the Heart Protection Study in this country.
‘The whole time we are waiting, people are dying of diseases we could do a major trial on,' he said.
Concerns were recently raised over Government moves to alter data protection legislation to give ministers the right to grant access to summary care record data without seeking patient consent.
Professor Weissberg welcomed the move, but warned it had to be thought through carefully: ‘If you have to go to the secretary of state every time you want to do a clinical trial then that would be a lot of work,' he said.