13 February 2014 — The Register
Raises concerns about gov’s failure to adequately inform patients
The Tory-led government has failed to make a good case for its plans to share GP medical records with information that is already stored by NHS England, the Royal College of General Practitioners warned on Wednesday.
Patients have, in turn, lost confidence in the so-called care.data scheme, said RCGP’s honorary secretary professor Nigel Mathers.
His comments come after NHS information chief Tim Kelsey admitted earlier this month that the health service had failed to adequately inform patients about how they can opt out of having their GP medical records shared throughout England.
The Information Commissioner’s Office similarly expressed concerns.
A flyer posted through letterboxes in January was carelessly slipped in among junk mail to supposedly inform occupants in 26.5 million households about the data grab, as well as to explain to those patients how they could decline having their information shared in that way, if they so wished.
But the £1m mass mailout proved woefully inadequate with complaints piling up about a lack of awareness of the scheme – from parties that are both for and against care.data.
Mathers said that the NHS needed to drum up support with a new round of publicity about care.data, which has a variety of critics including people working at GP surgeries.
“We urgently need a renewed national push by the authorities to ensure that patients are fully informed, in clear terms, about the benefits of the scheme, what their rights are, and what their rights to opt out are,” he said.
Many GPs remain uncertain about the safeguards that will apply.
The College remains supportive of the care.data initiative in principle, as we believe that it will help the NHS improve the quality of care for patients and to better prepare for outbreaks of infectious disease, such as flu, through for example, the use of shared suitably anonymised data to build up a picture of which treatments work best.
However we urgently need reassurance about what plans are being made to address current GP and public concerns to restore public confidence in the scheme.
The prof said that Whitehall and NHS England needed to respond quickly to the concerns that had been raised and warned that questions could be “asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed.”
Mathers said that the Health and Social Care Information Centre – the body that is responsible for hoovering up GP medical records and then sorting it into different categories – had told the RCGP that it doesn’t make a profit from providing such data to other organisations.
He added that the HSCIC insisted that “that data will not be sold to insurance companies for the purposes of insurance and … confidential data can only be disclosed where allowed by the law.”
On Tuesday, the government’s health undersecretary Dan Poulter told MPs that NHS England was surveying an undisclosed number of households to find out how effective its leaflet drop had been.
But the findings will not be used to improve the publicity around care.data. “This will ensure that lessons are learnt to incorporate in future national mailings,” the minister said.
Poulter told Parliament that the government was doing enough to raise awareness about the data slurp.
The household leaflet is part of a comprehensive range of awareness raising activities, which also includes: leaflets and posters in every general practice in England; articles in newspapers; information on the NHS Choices website and via social media; as well as information cascaded via 350,000 patient groups and charities.
What has been your experience of this campaign? Have you received the leaflet through your door? Did you read it? And what about GP surgeries? Do staff there know anything about care.data or are they confused by your questions? Get in touch with the author of this story, or tell us about it in the comment section. We want to hear your views. ®