GPs should provide patient data for research 'as a public good'

GPs have a public duty to provide their patient data for use in research to ensure drug safety trials, clinical guidance and other healthcare data is based on accurate, representative information, health researchers have said.

Dr Janet Valentine

Speaking at the RCGP annual conference in Harrogate, health researcher Dr Janet Valentine, director of the Clinical Practice Research Datalink, said GPs should provide data for research for ‘the public good’.

NICE guidance, drug safety studies and data on diseases are all reliant on GP data and run the risk of being biased or missing crucial information if only a subset of national data is enabled for use in research, she said.

GPs must be open to providing their data to allow more accurate, representative data to form the basis of important studies. GPs will reap the benefits of this, she said - having access to more data will allow findings to be made faster and data on rarer diseases to be found.

Patients are amenable to contributing towards research, as long as they are adequately informed on what exactly it will be used for, such as to improve drug safety, she added.

GPs ‘have a really important role’ in informing their patients on this and becoming advocates for wider use of patient data.

She added that it was ‘irresponsible’ to scare monger and suggest that making data available for uses other than direct patient care would be used ‘in ways other than to benefit patient care’.

‘Drug safety studies and clinical guidance often depend on comprehensive, representative patient data - and that comes from GP practices,’ she said.

‘So it’s a virtuous circle. GPs provide the data, that data is analysed, the guidance is then used in practice for better care. If we don't get lots of GPs contributing data, sometimes we get inconclusive results from research studies because patients are missing or it’s not representative.

‘We have to try and encourage everyone to have sensible conversations with their patients to explain the uses of data other than for direct care. I think most people would want to know the drugs they use are safe - I can’t imagine anyone not - but how do we get that data that tells them it’s safe?

‘That’s because their GP practice contributes their anonymised patient data to databases such as ours so we can analyse it and give the answers. So it makes sense, but those conversations have to be had.’

Full coverage of RCGP annual conference

Photo: Pete Hill

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