February 19, 2014

expert reaction to news stories that NHS medical records sharing programme care.data is being delayed for 6 months

The NHS medical records sharing programme care.data has been halted for 6 months due to concern that the plans have not been properly communicated.

Professor Sir John Tooke PMedSci, President of the Academy of Medical Sciences said:

“Sharing patient records through the care.data programme would bring enormous benefits for the coordination of healthcare and research into the understanding and treatment of disease. A national conversation is paramount to ensure the programme is implemented with the support of the public. The stakes are high given the potential future impact on healthcare, so I urge everyone with an interest in the scheme to engage in this conversation to ensure the benefits of sharing patient data are achieved.”

Nicola Perrin, Head of Policy at the Wellcome Trust, said:

“Sharing information from medical records has huge potential to drive progress in medical research and healthcare delivery, but systems for achieving this need to be trusted and understood by everyone. The Wellcome Trust therefore welcomes NHS England’s decision to postpone collection of data under its care.data scheme. This should allow for fuller communications that ensure people are aware of how their data will be collected and used, the safeguards that are in place, and how to exercise their right to opt out.”

Sharmila Nebhrajani, Chief Executive of the Association of Medical Research Charities, said:

“Charities and their supporting patient groups have always said that sharing data for research can be a really valuable opportunity to speed medical research but it must be done with care, competence and consent. Care that respects the sensitivity of the data, competence to ensure that information is held securely, and most importantly with the informed consent of the public. Care.data is an important idea stymied by its execution. Using this six month delay to better explain its mechanics and to seek that informed consent can only be a good thing.”

Imran Khan, Chief Executive of the British Science Association, said: 

“Care.data could be a huge boost for medical research in the UK but there are undeniably concerns over potential privacy risks. As with any medical intervention, people need to be able to make an informed judgement on the risks vs the benefits – and the public debate so far has been helping us do just that.”  

Prof Simon Wessely, President Elect Royal College of Psychiatrists, said:

“I am not surprised by this announcement.  The principles behind care.data remain sound.  No one has expressed any doubts that it will definitely improve public health, drug safety, our knowledge of the causes, treatments and outcome of illness, and how to improve the NHS.  But it has also become clear, as I have learned from doing phone ins and the like – that many people are simply not aware of how data is already used within the health service to improve health – nor of the complex system of checks, balances and safeguards that surround this.  It is also clear that nearly everyone I have spoken to is broadly in favour of this, particularly when they appreciate the systems in place, and the fact that abuses have been few and far between.   Finally, the programme has been caught up in concerns around the Health and Social Care act,  the perceived drive towards more privatization, and the general atmosphere of mistrust that has mushroomed since the Snowden revelations.  We need time now to disentangle the programme from all of these.  I am confident that when that is achieved, people will indeed give full support to using health data safely and effectively for the public good.”