Speaking to the House of Commons, the Health Minister Jo Churchill announced that the creation of a central NHS digital database from GP records in England will be delayed for two months.
Dr Natalie Banner, Understanding Patient Data Lead, said:
“Given the level of concern about the new system, I’m pleased that the Government has made the decision to delay rolling it out until September. However, NHS Digital must use this time wisely, to make sure the programme is implemented in a more trustworthy way.
“That means improving transparency about how this data is used, explaining people’s choices and addressing the understandable concerns raised by media, GPs and the public. It also means ensuring data is only accessed through secure environments as far as possible. The delay offers an opportunity to get this right – Government must not squander it.”
Nicola Perrin, Director of Policy and Public Affairs at the Association of Medical Research Charities (AMRC) said:
“It is crucial that patients and GPs have confidence in the way health data is used. It has become abundantly clear from both media coverage and social media comment that the rollout of the programme was being done in a way that undermined trust. And with any use of data, trust is crucial.
“The growing public concern has been an increasing worry to us. The collection and sharing of GP data for research is too important to get wrong. We hope the delay will give time to make sure there is appropriate engagement and clear communications, including explaining how people can opt-out, if they choose.
“With all the delays research has faced over the last year we cannot see it facing more unnecessary hurdles to progress. The use of GP data is vital to help medical research charities to understand more about the causes of disease, develop new treatments and improve care for everyone. This pause to collection is both timely and welcome but must be just that, a pause so that implementation can go ahead with fewer concerns and more transparency.”
Professor Dame Til Wykes, Head of the School of Mental Health and Psychological Sciences (MHaPS), Institute of Psychiatry, Psychology and Neuroscience, King’s College London, said:
“Lots of patients and healthcare professionals will be delighted that there is a delay in the roll-out of the General Practice Data for Planning and Research.
“We know that patients are concerned. There is a lot of evidence over the years on data sharing, including the Academy of Medical Sciences “Our data-driven future” report. They all highlight that we need to ensure transparency and so it was never a surprise that there would be an outcry. I welcome the Health Minister, Jo Churchill saying that the government are ‘absolutely determined to take people with us on this journey’ but we only have until September 1st to be more transparent and we have no plan about how this will be achieved.
“The research on data sharing demonstrate that patients want to see their data used for public benefit, but there is reluctance on commercial use. So it is no surprise that together with the privacy issues, this seems to be the most prevalent concern. Perhaps the best way forward is for oversight to include patients and transparency about use. I am a participant in Biobank and I get access to what projects they carry out, how the data are being used and I do feel I am contributing to future patient benefit. This is the model we need to mimic. “
“Patient groups are affected differently with people with mental health problems having the most concerns – this is not just those who experience these problems, but the public also say that this health information will be the most sensitive.
“We convinced mental health service users at the South London and Maudsley that they would share anonymised data for research through a long process of consultations, by agreeing that sharing would be inside the NHS firewall and having an oversight group chaired by a service user.”
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