Evidence submitted by the Royal College
of Psychiatrists (EPR 25)
SUMMARY
1. The Royal College of Psychiatrists recognises
the potential benefits that can accrue through improved information
management and communication from the use of information technology
as the basis for the patient's health record. It has the potential
to provide better patient information, improved cost efficiency
and more reliable information for quality control and health services
planning. Nevertheless the developments of the Electronic Record
transgress the traditional boundaries of the individual patients'
direct relationship with a healthcare professional and creates
"a new risk scenario which calls for new additional safeguards
as counterbalance" (Article 29 Data Protection Working Party,
2007).
2. Where sharing of information outside
the healthcare team is anticipated, including any proposed uplift
of information to the summary care record, patients' express consent
should be sought.
3 Concerning information sharing for direct
patient care, it will be important that those who need to know
receive appropriate and accurate information and that clinicians,
reflecting the wishes of their patients, retain control of the
flows of this information. Dissemination of information should
be as limited as possible, consistent with, among other things,
the maintenance of a safe situation.
4. The use of patient identifiable information
for secondary uses, including research, should be based on patient
consent unless there is justification under Section 60.
5. The particular concerns and needs of
specific groups of patients should be recognised. Mental health
issues, where stigma continues to attach, must be recognised as
one of several areas where patient information is of a particularly
sensitive nature. Patients with mental health needs therefore
may have understandable anxieties about the sharing of personal
identifiable information for purposes and for distributions they
have neither known of nor consented to. Four particular groups
require specific consideration:
— Patients who are suspicious or paranoid.
— Patients within the criminal justice
system (or with histories of the same).
— Patients with particular privacy
needs (for example high public profile, witness protected).
— Patients with impaired decision making
capacity.
BACKGROUND
6. We understand that the NHS Care Record
Service (NCRS), being delivered by NHS Connecting for Health,
is central to the National Programme for IT for England. It consists
of several linked national and local applications to be delivered
over the next few years as a network of patient records. The key
elements of the NCRS are:
— the Summary Care Record (SCR) consisting
of essential elements of a person's care records;
— the Detailed Care Record consisting
of the person's care record for that organisation and elements
of all care records relating to that person in other organisations.
7. The vehicle for information sharing will
be the Summary Care Record. Significantly the report of the Ministerial
Taskforce on the NHS SCR states "initially it (SCR) will
contain a small but important dataset of current medications and
allergies and adverse reactions which will be uplifted from GP
systems, initially as text and subsequently in coded form. Over
time the content will increase, subject to consent, to include
a more complete dataset from GPs and also information from detailed
records held by other providers of care for example hospitals
and community services".
8. The College welcomes the Task Force's
commitment to the highest levels of IT security.
CONSENTING ARRANGEMENTS
9. The Taskforce states "before the
Summary Care Record is implemented in a geographical area, a public
information programme will be carried out to explain to the public
how it works... and how... members of the public... can limit
the sharing of their information through the Summary Care Record".
The Taskforce recognised clear difference of view between both
the BMA and the Ethics Committee of RCGP on the one hand and the
Department of Health, its advisors and many Royal Colleges on
the other over issues of consent. The College has concerns regarding
the ethical and possibly the legal justification for the placing
of patient information on the Summary Care Record based solely
on an information campaign and inferred consent in the absence
of dissent (opt-out).
10. The College welcomes the following recommendations
from the Task Group with respect to the foregoing:
— An Advisory Group of stakeholders
drawn from patient, clinical and management interests is created
to oversee the future development of the NHS Summary Care Record
and to advise on its use.
— Patients must know what range of
information is in the Summary Care Record and who will see it,
and this process must continue throughout the development of the
Summary Care Record. Once sealed envelopes are available patients
will have far more control over who will see their information.
The Summary Care Record will become more valuable over time as,
with consent, its content becomes more complete. The Care Record
Guarantee sets out how the NHS uses patient information and how
it is protected.
11. It is our understanding that the initial
arrangements for uplifting information from GP records to form
the SCR (or spine) some diagnoses will not be uploaded. These
include mental health, sexual health and some infections. The
College is concerned that prescription information specific to
a disease category, such as HIV medication or antipsychotic medication,
will be included.
12. As patients present to their General
Practitioner they will have the opportunity to check their SCR
and to consent (or not) to their sensitive information being added
to the Summary Care Record. The College position is that these
arrangements must be rigorously upheld in order to ensure public
and professional confidence and protect patient's privacy rights.
PATIENT INFORMATION
ACQUIRED WITHIN
SPECIALIST/SECONDARY
CARE SERVICES
INCLUDING MENTAL
HEALTH SERVICES
13. The College has sought clarification
on the proposed development of the SCR in relation to secondary
care services with Mr Harry Cayton, Chair, Ministerial Task Force
on the Summary Care Record. He has given a clear indication that
the default position will be that not only can patients request
not to have a Summary Care Record or that their Summary Care Record
is not shared outside the organisation which created it, but can
also request that some parts of their clinical information is
not sent to their Summary Care Record. Later in the programme
Sealed Envelopes will be available which will allow patients to
"seal away" some of the information in their Summary
Care Record so that it is only accessible with their express permission
although the rest of the SCR may be available.
14. The College welcomes the establishment
by the Care Record Development Board of a working group to explore
the ethical issues surrounding the secondary uses of patient information.
THE COLLEGE'S
POSITION ON
PROTECTION, USES
AND DISCLOSURE
OF PATIENT
IDENTIFIABLE INFORMATION
15. The College's guidance on confidentiality
and information (Royal College of Psychiatrists 2006) provides
guidance to its members relevant for all systems and media, including
electronic patient records, Summary Care Records and Detailed
Care Records.
PRINCIPLES
16. Psychiatrists must not disclose any
clinical information about a patient to others, without that patient's
consent. However, the Duty of Confidentiality also exists within
a wider social context in which doctors have other moral and legal
obligations, which may need to be balanced with their Duty of
Confidentiality.
17. Although patient identifiable information
is generally held under ethical and legal obligations of confidentiality,
it is widely recognised that there are three categories of exception
to the Duty of Confidence, and thus three categories of circumstance
where the Duty of Confidentiality can be waived, namely:
— Where the individual to whom the
information relates has consented;
— Where there is a legal compulsion
or other legal basis to disclose otherwise confidential information,
either by virtue of statutory law, or by order of the court;
— Where, in the opinion of the clinician,
the duty to the public overrides the Duty of Confidentiality.
KEEPING PATIENTS
INFORMED
18. Patients must be informed of both the
primary uses (for their healthcare) and secondary uses (healthcare
purposes not directly related to their care) of their healthcare
information. They must also be informed of the choices surrounding
such uses and whether they can opt out. Patients should also be
informed about decisions to share information outside the NHS
and the reasons why this is necessary. Explicit consent to such
disclosure must be sought, and the outcome of the discussion recorded.
USES OF
INFORMATION FOR
DIRECT CLINICAL
CARE
19. Where patients have been informed of
the use and the sharing of their information, and the choice that
they may have, then express consent is not usually required for
the extent of the information sharing needed to provide healthcare.
This guidance refers to the usual sharing within the patient's
healthcare team.
SECONDARY USES
20. Many current uses of confidential patient
information do not directly contribute to or support the healthcare
that a particular patient receives, but instead provide more general
benefits, such as patient groups as a whole. It cannot be assumed
that patients seeking treatment are content for their information
to be used in these ways. Patients are owed a Duty of Confidentiality
and have the right to object to the use or sharing of confidential
information that identifies them. Patients need to be made aware
of this right. Efforts to gain consent are required. Alternatively
approaches that do not rely on confidential and identifiable information
should be adopted, for example anonymisation of information. Where
patients object to specific secondary uses their refusal should
be respected.
CONCLUSION
21. Based on the College Guidelines, a key
principle informing all uses of the Electronic Patient Record
is patient control of their information. In order to safeguard
privacy patients must be given control over their records. Where
sharing of information outside the healthcare team is anticipated,
including any proposed uplift of information to the summary care
record, patients' express consent must be sought. This is essential
to upholding the dignity and rights of our patients, for maintaining
their trust and confidence and is part of our duty of care. Concerning
information sharing for direct patient care, it will be important
that those who need to know receive appropriate and accurate information
and that clinicians, reflecting the wishes of their patients,
retain control of the flows of this information. Dissemination
of information should be as limited as possible, consistent with,
among other things, the maintenance of a safe situation. The use
of patient identifiable information for secondary uses, including
research, should be based on patient consent unless there is justification
under Section 60.
22. While the foregoing applies to all patients,
the particular concerns and needs of specific groups of patients
should be recognised. Mental health issues, where stigma continues
to attach, must be recognised as one of several areas where patient
information is of a particularly sensitive nature. Patients with
mental health needs therefore may have understandable anxieties
about the sharing of personal identifiable information for purposes
and for distributions they have neither known of nor consented
to. Four particular groups require specific consideration:
— Patients who are suspicious or paranoid.
— Patients within the criminal justice
system (or with histories of the same).
— Patients with particular privacy
needs (for example high public profile, witness protected).
— Patients with impaired decision making
capacity.
23. It will be important that such patients
are not further disadvantaged as a consequence of any blanket
rules regarding the Electronic Patient Record.
24. The College would welcome an opportunity
to discuss these issues with the Committee.
Professor R J McClelland
Chair, Confidentiality Advisory Committee
12 March 2007
Prepared for the Royal College of Psychiatrists
by its Advisory Committee on Confidentiality
ACKNOWLEDGEMENT AND
REFERENCES
The Confidentiality Sub-Committee gratefully
acknowledged the advice of the Ethics Committee of the Royal College
of General Practitioners.
Article 29 Data Protection Working Party (2007),
working document on the processing of personal data relating to
health in electronic health records.
Royal College of Psychiatrists (2006) Confidentiality
and Information Sharing. Council Report 133.
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