Moves to restrict researchers’ access to patient record data will undermine patient care, say top researchers in an article published by the medical journal Pulse. Heads of some of the UK’s top research organizations warn that over-protectiveness over the safety of public data will result in UK patients not having access to clinical trials treatments.
The UK government has dropped a key pledge to grant researchers the right in the NHS constitution to access identifiable medical records without needing to get patient consent – this was after an uproar among General Practitioners (GPs).
In order to select clinical trial participants, the researchers say it is essential to be able to access patient data without having to seek consent first. The researchers suggest safe havens be set up so they might access anonymous patient data.
Sir Mark Walport, director of 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.”
Sir Mark says the argument is being distorted by concern over high profile data leaks from government agencies “None of these were related to medical research – not one,” he said.
Professor Peter Weissberg, Medical Director, British Heart Foundation, said patients could gain access to “gold standard” treatment in clinical trials, but this was being jeopardized by Government moves to curb access to medical records.
Weissberg added “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.”
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Written by – Christian Nordqvist