Patients are “largely in the dark” about plans to share their personal medical records, according to a health consumer group in Bradford.
NHS England is to bring together the population’s personal data in a bid to improve research into the outcome of treatments.
Using people’s NHS numbers, dates of birth, gender and postcodes, information kept by GPs, hospitals and community services, will be linked and made available to other organisations.
The public body said the information, held in a secure system managed by the Health and Social Care Information Centre, will be anonymised before it is made available to approved researchers and those planning NHS services.
But there are concerns that the scheme has not been properly explained and that people may not realise that if they want to opt out they have to do so at their GPs before March.
Healthwatch Bradford and District’s Victoria Simmons said: “Despite a nationwide mail-out campaign, people are still largely in the dark about plans to share their personal medical records.
“Although the leaflets about the NHS care data programme have been delivered to homes across the district, we feel that people don’t know enough about NHS England’s plans to make an informed choice. Most people that we have spoken to don’t know anything about it, they may not have noticed the leaflet because it came through their door with lots of other junk mail.”
Almost a quarter of Healthwatch organisations across the country have raised concerns about the clarity and accessibility of a leaflet explaining the scheme posted to all homes in the country.
Healthwatch is urging NHS England boss Sir David Nicholson to delay the April 1 deadline and step up efforts to explain the scheme in plain English.
A spokesman for NHS England said: “The leaflet distribution initiative is currently ongoing and residents should receive the leaflet as part of their normal daily postal delivery. The programme is also being supported by a nationwide marketing campaign.
“This includes, for example, a national media publicity initiative, the distribution of posters and leaflets to GP surgeries, as well as collaboration with patient groups, charities and voluntary groups to help maximise awareness of the campaign. There is also an extensive online and social media campaign.
“We are also keen to ensure that patients are able to raise any concerns they may have about the sharing of their information, including opting out of the scheme if they wish.” People can get more information at www.nhs.uk/caredata.”
Geoff Shores and his wife, Kathleen, found out about the care.data scheme not through a leaflet delivered to their house, but through Mr Shores’ involvement in his surgery’s patient committee.
“I don’t ever remember getting a leaflet,” the 70-year-old said.
“The leaflet is very similar to a junk leaflet and I would think most of the population of Bradford, certainly people I have spoken to, won’t remember receiving it.”
Mr Shores said the GPs would have to download data to NHS England’s shared data system, unless patients asked them not to, which he is worried about.
“I bet 99 per cent of the population won’t have a clue about what’s going on,” the retired policeman said.
“They [NHS England] say the information is anonymised, but it gives details of NHS numbers and if somebody starts hacking it, you don’t know where it might end up.
“If you’ve something medical you’ve told your doctor about, this could be going on the data base.”
“It’s a very great worry for me and for the population that your records are going on this database.”
Mr Shores said his medical practice had an opt-out form which patients could complete if they wished.