Patients’ NHS data that private companies could get access to under the controversial Care.data programme, will not be able to use such data for marketing purposes or to raise insurance premiums.
The NHS have said that the scheme will allow primary care data from GP practices to be shared with the new Health and Social Care Information Centre (HSCIC) and clinical care groups (CCGs), and eventually matched with secondary care data, anonymised and shared with clinical researchers.
Under the programme, the NHS claims that researchers will only be able to access non-identifiable data collected from health records.
But Phil Booth, co-ordinator at patient pressure group medconfidential claims that the data is not just for the benefit of patient care, but will be used for secondary uses, including potential access by research bodies, information intermediaries, companies, charities and others.
“Patients need to be told who is going to have access to their medical information and what for,” Booth told Computing.
“Broad promises about research benefits are all very well, but the Care.data programme hasn’t even received approval to pass data to researchers yet, and you don’t see NHS England explaining to patients that it wants all sorts of others – including private companies, think tanks and ‘information intermediaries’ – to have access as well,” he added.
This could include insurance firms, who would have to get approval to access the HSCIC data, and if approved, then firms will have to pay to extract this information.
Although much of the data to identify patients would be wiped -some may remain and private companies could link their own datasets to the data and identify patients.
This could, for example, lead to insurers increasing the price of health insurance.
However, at the ISCG Open House conference today, the NHS’s chief data officer Geraint Lewis has claimed that companies cannot use care.data information for marketing purposes, or for selling insurance premiums.
In a statement he said: “NHS England and the HSCIC welcome the increase in public awareness and debate about NHS data usage following the nationwide distribution of the leaflet ‘Better Information Means Better Care’.
“It is vital, however, that this debate is based on facts, and that the complexities of how we handle different types of data are properly understood. Patients and their carers should know that no data will be made available for the purposes of selling or administering any kind of insurance and that the NHS and the HSCIC never profit from providing data to outside organisations,” he said.
Data is to be extracted from GP practices as early as March, but Booth argued that this would be “deeply irresponsible because it risks seriously undermining trust in what the NHS does with people’s data”.
He added that the Care.data leaflets that were sent out to households across the UK – at a cost of £1m – do not clearly tell patients what the programme is, or what patients’ options are.
“It‘s clear the public know very little about what is planned for their medical records, and even less about their right to opt out. That your family’s medical confidentiality could rest on spotting a single evasively-worded junk mail leaflet makes an absolute mockery of both transparency and of consent.”