Details from a database of patients' conditions, treatment and medical histories could even be sold to private companies
The traditional confidentiality between
patient and GP is coming to an end. Photograph: Rex Features
The relationship of confidentiality between doctor and patient may be ending.
From next year, our medical records are likely to be seen by many more people,
in addition to our GP, hospital doctor or nurse, and potentially used in
different ways, including by private companies aiming to increase their profits,
without our consent being required.
There are growing concerns that the use of patient data has the potential to
damage the relationship between patient and doctor. Some critics fear that many
patients will be more reluctant to have an open discussion with their GP or
consultant if they suspect that information could be shared with outside bodies,
within the NHS and the private sector and be stored for future use, without
their consent.
The first phase of the programme will join up patients' GP and hospital care
records, a huge task in itself. Its long-term goal is to merge medical and
social care records, opening up another area of concern. Sue White, professor of
social work at Birmingham University, said this could cause many women with
mental health issues or problems with domestic violence to withhold information
from their GP if they think it could be passed on to social services,
potentially affecting their medical care.
"Many women are already reluctant to be completely open with their GP as they don't trust the system, and if this scheme goes ahead, there will be a risk that some women will not be open with their doctor, as they will think it is not completely confidential," White added. "So a woman facing domestic violence may not tell their doctor about it – I certainly wouldn't if I was in that position."
The HSCIC, which claims its IT safeguards will ensure there is no breach of confidentiality of patient records, aims to make data available in three formats: identifiable data, containing identifiers such as date of birth and postcode, but only where there is a legal basis or with patient consent; potentially identifiable data, containing a unique "pseudonym" for each person but no "real world" identifiers; and non-identifiable or aggregated data.
Early in 2014, all 22m
households in England are to receive a leaflet on the "care.data"
programme, being run by an offshoot of NHS England, the Health and
Social Care Information Centre (HSCIC). Its role is to harness information in
patient records to use in planning, commissioning and improving health services,
in line with a pledge by David Cameron to
open up the use of patient information to NHS planners and commercial companies.
A large part of the remit is to sell "aggregate" patient information to the
private sector. The General
Practice Extraction Service will start to download details of patients'
conditions, treatment and medical histories from GP-held records and build a
central database, unless patients opt out.
At a press briefing, Dr
Mark Davies, medical director of the HSCIC, said the question of who owned
medical records was a legal grey area, but that "ethically and philosophically"
they were owned by patients. However, in a recent letter to Stephen Dorrell,
chairman of the all-party Commons health committee, the information
commissioner, Christopher Graham, says that "technically, medical records
are owned by the secretary of state for health". He then adds: "However, in data
protection terms, the issue is not one of ownership but of control over the
information contained in the record."
"Many women are already reluctant to be completely open with their GP as they don't trust the system, and if this scheme goes ahead, there will be a risk that some women will not be open with their doctor, as they will think it is not completely confidential," White added. "So a woman facing domestic violence may not tell their doctor about it – I certainly wouldn't if I was in that position."
The HSCIC, which claims its IT safeguards will ensure there is no breach of confidentiality of patient records, aims to make data available in three formats: identifiable data, containing identifiers such as date of birth and postcode, but only where there is a legal basis or with patient consent; potentially identifiable data, containing a unique "pseudonym" for each person but no "real world" identifiers; and non-identifiable or aggregated data.
Phil Booth, a co-founder of
MedConfidential, a campaign
group on data privacy, said: "Many IT experts say it will be possible to
re-identify this so-called pseudonymised patient data if you know how to go
about it, and this is what many commercial companies want – to be able to
identify groups and types of patients, and use that data for marketing."In
addition, around 800,000 NHS employees can already access a certain level of
patient data with their NHS swipe cards, so how many of these people will be
able to access this pseudonymised data? This is all being done quietly behind
the scenes and patients need to know more about how their data will be used
before they give their consent to their records being used in the care.data
programme."
