Evidence submitted by Dr Peter Smith (EPR
1. The introduction of the electronic method
of recording medical information has been one of the great successes
for primary care in the United Kingdom in the last decade. The
new technology has made it possible to hold information in a manner
that was previously unimaginable, permitting detailed analysis
of patterns of health and the effectiveness of treatment.
2. In the hands of trained medical practitioners,
working with clinical systems and file servers based securely
in their own premises, the advantages for improvements in health
care have been immense, yet the fundamental trusting relationship
between patient and doctor has been maintained.
3. Who may view the data, is presently clearly
understood by patients. They believe that information given in
confidence will remain under the stewardship of their physician
and only imparted to other persons as and when necessary. The
lines of accountability are also short and well defined.
4. The extensive use of clinical codes to
record items of data, which would have formerly been written to
paper, presently allows academic enquiries and searches of anonymised
information, which is perfectly adequate for most lines of research.
Search engines for these purposes are already being used regularly
in primary care under the supervision of the medical practitioners
who are responsible for the security of the patient data.
5. For some patients, there may be advantages
if some of their clinical information is held at a remote site
and accessible to other clinicians. For the majority there are
no specific reasons why this should be assumed to be necessary.
Alternative methods, by which data may be made available with
explicit consent, already exist and have been disregarded, in
the pursuit of a centralised and all-encompassing database.
6. If the National Data Spine becomes available
to patients, the emphasis should to encourage those with the greatest
need to share clinical data to opt-in, rather than enter into
a vexing period of debate as to whether patients should be permitted
7. I am a general medical practitioner and
clinical data user. I have been in the forefront of the transition
from paper records to electronic format over a period of 15 years.
The practice in which I work has been one of the first to recognise
the potential for electronic record to revolutionise and streamline
health care. Initially the technology was not suited to mass storage
of vast amounts of information and was therefore mainly used to
perform repetitive functions such as repeat prescription issuing.
As advances in electronic hardware has permitted greater volumes
of information and scanned images to be held for rapid retrieval,
we have moved to the point where many practices in the UK have
become either paper-light or even paper free. Throughout this
period of transition we have become increasingly aware of the
issues of ownership of patient data. Many patients view their
data as being their own, despite the protestations of successive
Secretaries of State, either in print at the foot of our old Lloyd-George
record cards, or through a tacit assumption that provision of
electronic hardware confers intellectual property rights to the
data held therein. This paradox is at the heart of the present
anxiety about the right to withhold personal data from the State,
which is not viewed in all quarters as entirely benign in its
intentions, at all times. I have worked for 30 years in primary
care and for more than 10 years as a director of out-of-hours
services in my locality. I have led on clinical governance issues
and data protection on behalf of my Primary Care Trust.
8. The reasons for a high level of computerisation
of records in general practice have not just been due to technical
advances. Leadership from within the profession at the highest
level and political support for primary care, have combined to
build an appropriate regulatory framework and financial incentives,
particularly the present Quality & Outcomes Framework, have
encouraged GPs to use computers extensively.
9. It is the responsibilities of those engaged
in the conduct of research and particularly those involved in
undertaking ethical review, to decide that the public interest
in conducting the research substantially outweighs the public
interest in privacy. This sits most comfortably with those most
closely associated with the data subjects.
10. Only a small percentage of patients
actually need large amounts of complex information to be made
available to other health professionals at all times. Even in
emergency situations, it is rarely impossible to make a diagnosis
or institute treatment without reference to primary care medical
11. Medical records in summary or detail
can presently be provided by GPs within 48 hours or shorter periods
of time, upon appropriate and verifiable requests from other clinicians.
These are generally transmitted by facsimile, which is virtually
"un-hackable". Increasingly electronic data will be
able to pass directly between clinical systems upon request.
12. A distributed database, with file servers
in each practice, is less vulnerable to massive data loss through
equipment failure or power outages and malicious interceptions
than area-wide or National databases.
13. Alternative web-based solutions, permitting
patients to lodge clinical biometric data or clinical summaries,
already exist. The patient may access this data much in the same
manner as a personal bank account.
14. Electronic memory has become very affordable
in recent years, permitting an entire medical record to be fully
transportable in other devices such as mobile telephones, personal
data assistants, memory sticks and credit-style cards. Such arrangements
encourage personal responsibility for health and should not be
15. The National Data Spine is overly complex
and unwieldy for the intended purpose. Considerable savings will
accrue from limiting the scope and remit of the service, even
at this late stage of development.
16. The Select Committee should recommend
the Government cease its pursuit of hegemony over the entire medical
record of each of its citizens, since this is in direct contravention
of Article 12. Universal Declaration of Human Rights that
no one shall be subjected to arbitrary interference with his privacy,
family, home or correspondence, or to attacks upon his honour
and reputation. Everyone has the right to the protection of the
law against such interference or attacks.
17. The National Data Spine has merit in
that specific medical data may be placed there with explicit consent,
in order that is may be shared with other clinicians. This should
be a service that is offered to patients and not a compulsion.
18. Access to services such as Choose and
Book, for arranging hospital appointments should not be dependent
on uploading of entire medical records to the National Data Spine.
19. Alternative arrangements for the self-management
of personal medical and biometric data by patients should be encouraged,
through the use of secure, independent web-based solutions and
portable data storage devices.
Dr Peter Smith
19 February 2007