Clause 59

[Dr Alan Hassey]

 Thought the list might be interested to see the BMA position on clause 59
(Health & Social Care Bill). I understand this document is now in the public
domain from the BMA....

------------from BMA-----------------

HEALTH AND SOCIAL CARE BILL


The Health and Social Care Bill contains a Clause - Clause 59 – which gives
sweeping enabling powers to the Secretary of State for Health to make
Regulations about the use of patient information.

The Secretary of State for Health would acquire power to require or permit
information to be shared between organisations for medical purposes, or to
prevent such sharing, where he considers this is in the interests of
improving patient care or in the public interest.  It is of particular
concern that Regulations may in future provide that the processing of
information can be deemed lawful despite any common law obligation of
confidence.

The bill gets around the Human Rights Act 1998 and Article 8 of the European
Convention for the Protection of Human Rights and Fundamental Freedoms
because it’s a change to the our laws;   Article 8, dealing with the right
to respect for private and family life, states that “there shall be no
interference by a public authority with the exercise of this right except
such as in accordance with the law and is necessary in a democratic
society …. for the protection of health”.

This Clause threatens the confidentiality of personal health information and
incompatibilities between the requirements of the law and the maintenance of
professional ethics will develop.  Both the GMC and the BMA have issued
briefings on Clause 59, expressing reservations about its scope.  The BMA
has drawn attention to the need for a public awareness campaign to coincide
with any moves to legislate in this area.

The DOH says there are three broad reasons for introducing Clause 59:

·	to protect cancer registries, which had been threatened by paragraphs 22
to 27 of the GMC’s publication Confidentiality: Protecting and Providing
Information, and in particular by the statements that express consent should
be sought before information is disclosed and that ‘the automatic transfer
of personal information to a registry … before informing the patient that
information will be passed on, is unacceptable save in the most exceptional
circumstances’
·	to overthrow the Source Informatics appeal court judgement giving the
Secretary of State powers to restrict the flow of aggregated anonymised
data, despite the fact that patients’ personal health information is not
being disclosed in identifiable form
·	to allow the implementation of the announcement in para.10.3 of the NHS
Plan that ‘in future … letters between clinicians about an individual
patient’s care will be copied to the patient as of right’.

The general case for express consent has been strengthened recently as a
result of publicity and public concern about the paternalism of doctors –
Alder Hey etc.
There seems no good reason why at the same time the SOS should seek to
bypass the seeking of consent he so vigorously supports for patients in
other areas of medicine.

The arguments in favour of sharing information with cancer registries can
easily be understood by patients and can be put to them with ease during the
course of their clinical care.  Few would deny their consent to the sharing
of appropriate information in their own and the public interest.

The BMA has stated, concerning disclosures to cancer registries without
consent, that “whether [disclosure without consent] is an acceptable
solution to the current legal uncertainty is a matter for society, and not
doctors alone, to decide.”  “The BMA would continue to advise that patients
should usually be informed in situations even when the law requires
disclosure and they have no right to refuse”.  Furthermore, the law should
only require disclosure in situations in which there is an overwhelming
public interest sufficient to justify overriding patients’ wishes.

Similar issues of consent arise in relation to the implementation of the
intention to copy letters to patients routinely.  Again, individual patients
should be asked whether they wish to receive such letters and for how long.
(Some patients, including those living in multi-occupancy households and
young people who do not wish their parents to learn of their consultations,
may not wish to be sent such letters.)  Additionally, the policy could be
promoted via guidance on good practice, and if deemed necessary could be
implemented via changes to the contracts of doctors working in the NHS.
There seems no strong case for primary legislation to support this.

The arguments in favour of the sharing of aggregated, anonymised information
were rehearsed in both the Court hearings in the Source Informatics case, to
which the GMC was a party.  The Court of Appeal judgement meant that the
Department of Health failed in its attempt to prevent Source Informatics
buying anonymised patient information from pharmacists.  In general terms,
if patients’ confidentiality is not breached, there seems no necessity to
give the Secretary of State powers to restrict the sharing of such
information.  Fears have been expressed that the proposed powers could as
drafted be used to prevent external monitoring and audit of the NHS.

The only reassurances are that

·	‘before making any regulations under this section the Secretary of State
shall consult such bodies appearing to him to represent the interests of
those likely to be affected by the regulations as he considers appropriate’
(Clause 59(9))
·	‘regulations under this section may not make provision for or in
connection with the processing of prescribed patient information in a manner
inconsistent with any provision made by or under the Data Protection Act
1998’ (Clause 59(8))
·	under the Human Rights Act 1998, secondary legislation may be overturned
by the Courts where they consider Convention rights have been breached
·	regulations ‘may not make provision requiring the processing of
confidential patient information for any purpose if it would be reasonably
practicable to achieve that purpose otherwise than pursuant to such
regulations, having regard to the cost of and the technology available for
achieving that purpose’ (Clause 59(5))
·	there is an annual review to ensure that any extant regulations do not
contravene Clause 59 subsection (5) (Clause 59(6))
·	‘no … regulations shall be made … unless a draft of the statutory
instrument containing the regulations has been laid before, and approved by
a resolution of, each House of Parliament.’ (Clause 61(3))

However there is an additional fear in the clever use of the words “cancer
registries”.  These are nothing more than databases and the true extent of
the clause 59 powers are then revealed. The SOS’s powers would be over any
of the databases in the NHS, that means your and my surgery clinical
systems, your HA/PCG/PCT/Co-op systems. Any other local databases. The
national databases such as the Exeter patient register, PPA, NSTS and
finally the yet to be created national NHS Direct central database.

Truly the SOS would have powers of control over a vast amount of data.

The BMA and GMC is seeking amendments to this bill but in essence we think
this is more a decision for society as a whole rather than one for the
profession alone.
-----------------end--------------

===
Dr Alan Hassey
mailto:alan.hassey@btinternet.com
RCGP Health Informatics Task group
===