October 16, 2013

expert reaction to announcement from NHS England regarding their communications strategy for Care.data

NHS England and the Health and Social Care Information Centre (HSCIC) announced that every household in England will be sent information about care.data – an NHS project to collect patient records from all GP surgeries.

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

 “Patient records save lives and the information they hold is vital for medical research. It is essential that when people are willing to make the public spirited act of sharing their medical records with researchers, they can be sure that those data will be treated with respect.

“They need reassurance that the records will be made available with care, to protect anonymity; with competence so that leaks and mistakes will not occur; and with consent, so that those who do not wish to take part are able to raise an objection.

“I am certain that if this reassurance can be offered, patients will overwhelmingly be willing to make their records available for research. And from that consent we can find new knowledge, insights and treatments that will benefit patients, all those who know, love or care for them and any of us who may fall ill at some time in the future.”

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

“The UK has an outstanding track record in the use of data for public health research, and NHS England’s Care.data should provide an invaluable resource that will help translate research into patient benefit.

“Patient records provide data that can be used to understand the causes of disease, to investigate the safety and effectiveness of drugs, treatments and interventions, and to improve health care services. However for this research to be carried out, researchers need access to large, representative samples of accurate population data.

“For the majority of medical research projects the risk of disclosure of sensitive information is extremely low. On the other hand, the risks to public health of impeding such research are potentially very large. It is therefore essential to communicate clearly exactly how and why patient data is used, how it will be stored, and how everyone can make an informed decision about exactly how their data is used.”

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

“Patient records are an extremely valuable resource that can help the NHS to deliver the best possible care and save lives, by helping doctors to prescribe the safest and most effective treatments. Researchers recognise that medical records are both personal and sensitive, and the public must have confidence in how their information might be used. 

“NHS England’s announcement of plans for a major public awareness raising programme is a welcome step forward and should help to ensure patients better understand how their records are used beyond their direct care.  Transparency is essential, and we look forward to seeing information about the benefits of using patient records, the safeguards that are in place and the opportunities for people to make an informed choice about how their data might be used.”