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The guidance from the GMC that patients' consent is required before
cancers can be registered is a recipe for chaos. The UK Association of
Cancer Registries has achieved a remarkable record of cancer incidence and
mortality that allow health planning for the future. The Registries have
found that the most reliable and consistent source of data on cancers is
obtained at the time of diagnosis from histopathology departments. This
diagnosis occurs at an unpredictable time in the process of patient
consultation, and may often be a surprise to both patient and clinician.
To obtain the consent of all patients for registration of the details of
their cancer in this complex situation, and to feedback that information
to the pathology department so that registration can proceed is unlikely
to be possible using a paper-based system. The electronic patient record
with an appropriate prompt for clinicians and immediate connection to the
pathology record may provide one solution, but this scenario is some time
from reality in most hospitals.
Patients must clearly be provided with appropriate and clear
information on how the information from their clinical episode may be
used, and they must have access to that information in order to be assured
of its validity. I suggest that there should be a substantial public
information campaign to present to the public how cancer registration data
can inform health care priorities, and what the dangers are if these data
are lost.
A similar argument can be applied to the MRC Interim Guidelines on
the use of Tissues in Research (1999), as noted by Dr Furness in his rapid
response (7 October). There is also an interesting resonance in the paper
by Strobl et al. (BMJ, 321,890) describing the problems with
epidermiological research and data protection.
While I fully support the rights of patients to make informed
decisions about personnal data, the trend exemplified by the guidelines
from the GMC and MRC is to
hinder the gathering of clinical and research data which will ultimately
benefit the whole population.
These issues require urgent resolution at a national level.
Consent for Cancer Registration - a logistical nightmare in prospect
Sir,
The guidance from the GMC that patients' consent is required before
cancers can be registered is a recipe for chaos. The UK Association of
Cancer Registries has achieved a remarkable record of cancer incidence and
mortality that allow health planning for the future. The Registries have
found that the most reliable and consistent source of data on cancers is
obtained at the time of diagnosis from histopathology departments. This
diagnosis occurs at an unpredictable time in the process of patient
consultation, and may often be a surprise to both patient and clinician.
To obtain the consent of all patients for registration of the details of
their cancer in this complex situation, and to feedback that information
to the pathology department so that registration can proceed is unlikely
to be possible using a paper-based system. The electronic patient record
with an appropriate prompt for clinicians and immediate connection to the
pathology record may provide one solution, but this scenario is some time
from reality in most hospitals.
Patients must clearly be provided with appropriate and clear
information on how the information from their clinical episode may be
used, and they must have access to that information in order to be assured
of its validity. I suggest that there should be a substantial public
information campaign to present to the public how cancer registration data
can inform health care priorities, and what the dangers are if these data
are lost.
A similar argument can be applied to the MRC Interim Guidelines on
the use of Tissues in Research (1999), as noted by Dr Furness in his rapid
response (7 October). There is also an interesting resonance in the paper
by Strobl et al. (BMJ, 321,890) describing the problems with
epidermiological research and data protection.
While I fully support the rights of patients to make informed
decisions about personnal data, the trend exemplified by the guidelines
from the GMC and MRC is to
hinder the gathering of clinical and research data which will ultimately
benefit the whole population.
These issues require urgent resolution at a national level.
Competing interests: No competing interests