Memorandum submitted by the British Medical
Association
1. The British Medical Association (BMA) is
an independent trade union and voluntary professional association
which represents doctors from all branches of medicine throughout
the UK. It has a membership of over 141,000 doctors.
B. DATA PROTECTION
Whether the new provisions for the creation
of information sharing gateways by secondary legislation compatible
with the right to respect for private life, and in particular
the right to respect for personal information (Article 8 ECHR
and the common law).
2. The BMA is extremely concerned about the
impact of Clause 152 of the Coroners and Justice Bill on the confidentiality
of personal medical records. The Clause gives ministers of state
the power to enable the sharing of any data that fall within their
sphere of responsibility without the consent of the data subject.
It therefore permits the Minister of State for Health to order
the sharing of confidential health information without the consent
of the patient to whom the data refers, and irrespective of the
views of the individual data controller, such as the doctor, who
has requested the information on the presumption that it will
remain confidential. It enables the appropriate minister to set
aside the common law duty of confidentiality, which has developed
over many years and balances the interests of both private individuals
and the public, and the confidentiality requirements of the Data
Protection Act.
3. The relationship between doctor and patients
is based on trust. In the course of consultation and treatment,
patients will often disclose highly sensitive information to their
doctors, information that can be vital to ensuring the provision
of appropriate care and treatment. This information is disclosed
on the basis that information will be kept confidential. The Bill
as drafted will mean that doctors will no longer be able to reassure
patients that their information will only be seen by those with
a direct professional interest in their care. It will undermine
the presumption of confidentiality, corrode trust in the doctor-patient
relationship and will potentially have a disastrous impact on
both the health of individuals and of the public. Many key public
health goals will be put at risk. Detail on the Government's intentions
is sparse, but as currently drafted there is nothing in the Bill
that would prevent the Government, in theory, overturning the
confidentiality clauses of the HFE Act or even of the Venereal
Disease Regulations. The BMA is extremely concerned that this
Bill will also destroy confidence in the NHS Care Record Service
and will result in patients either withholding vital information
or of opting out of the care record system altogether.
4. The particular sensitivity of medical information,
and the fact that it is afforded special protection by Article
8 ECHR was recently established by the House of Lords in the case
of Campbell v MGN. The case involved a balancing of Article 8,
the right to respect for private and family life, and Article
10, the right to freedom of expression. In the view of the House
of Lords, the fact that the information relating to Ms Campbell
was health information gave it particular status under Article
8. In the BMA's view, this status derives from several aspects:
— the nature of the harms that could
befall individuals through inappropriate access to and use of
their confidential medical information;
— the harm that could accrue to individuals
if concerns about confidentiality result in a failure either to
disclose relevant health information or to access health services
at all; and
— the public health impact of a loss
of faith in confidentiality leading to lower uptake of health
services.
5. Confidentiality therefore is central to ensuring
both the highest standards of personal health, the maintenance
of general public health, and to the pursuit of public policy
goals in health. Clause 152 threatens to undermine each of these,
leading to potentially disastrous unintended consequences. In
the BMA's view the Clause should either be removed in its entirety
or restricted to appropriately anonymised information.
Whether the new powers of the Information Commissioner
to issue assessment notices should extend to the private sector
6. The new powers of the Information Commissioner
to issue assessment notices should extend to the private sector.
The Data Protection Act covers both the public and private sectors
and misuse of data by either sector would be equally damaging
to the public. Whilst government data losses have received greater
media attention, there have been cases where private companies
have lost data. An example is the loss of thousands of criminal
records by PA Consulting in September 2008.
7. The extension of these powers is particularly
important in relation to health data. There has been an increase
in the number of private providers providing care to NHS patients.
It would be nonsensical for the same data to be regulated differently
and patients should be offered the same guarantees of confidentiality
regardless of who provides their care. Patient data is also handled
by private companies for reasons not directly related to patient
care for example for research purposes. Whilst this research may
be valid and approved there are still anxieties about the private
sector handling patient data. Patients tend to be less trustful
of private companies, who may have commercial interest in the
data, and therefore scrutiny of private sector organisations is
arguably of even greater importance.
8. In practical terms it should be recognised
that there is a limit to the work that the Information Commissioner's
office can undertake and extending these powers to the private
sector will present a huge task. There needs to be transparent
criteria and processes in place for selecting and prioritising,
which organisations should be subject to assessment notices. Criteria
should include the sensitivity of the data, the amount of data
held and evidence of bad practice.
February 2009
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