Examination of Witnesses (Questions 565
- 567)
WEDNESDAY 21 JUNE 2000
DR MONICA
ROCHE AND
DR TOM
DAVIES
Chairman
565. I now call Dr Monica Roche and Dr Tom Davies
of the UK Association of Cancer Registries. We look forward to
your evidence.
(Dr Roche) Thank you for the opportunity
to draw the attention of the Committee to the problems that UK
cancer registries are currently experiencing with confidentiality
and patient consent. The background is that we have had a United
Kingdom cancer registration scheme for nearly 40 years and it
is the largest scheme in the world. In spite of the fact that
we know the current system is far from perfect, cancer registries
have contributed to a large volume of research addressing just
some of the questions we have heard about today, about the causation,
prevention and treatment of cancer. In addition, cancer registries
are the sole source of information about cancer incidence and
survival at population level. The United States and some European
countries are currently looking at increasing the proportion of
their population which is covered by cancer registration so they
can monitor the impact of political strategies on health. We have
a national cancer registration scheme. We can look at changes
in cancer survival over time, we can look at differences in survival
between different parts of the country, between different social
groups and we can evaluate the effectiveness of our national cancer
screening programmes. It is essential that we do not lose the
capacity to do that. My colleague will tell you about the current
concerns about confidentiality.
(Dr Davies) The issue is that up to now cancer registries
have worked on the principle of implied consent for the collection
of data. This has worked very well with very few complaints, in
part because the British cancer registries have quite a coherent
protocol for the use and release of data. We have adhered to it
rigorously. In recent years concerns have been expressed and these
concerns are based on the fact that cancer registries are no longer
part of regional health authorities so their standing is in doubt.
The General Medical Council and the Data Protection Registrar
or Commissioner increasingly take the view that patients should
be informed and explicitly asked for their consent for data to
be collected. This week a multicentre research ethics committee
has refused consent for one of Professor Ponders' studies on endometrial
cancer on the grounds of doubt about the legality of cancer registries.
We know that in the Thames regions hospitals are insisting on
clauses in the service level agreements that patients should be
asked for consent. If it becomes necessary for registries to have
informed consent from patients, we are pretty sure that there
will be under-reporting of cancer, fairly massively. We know from
the case of the Federal Republic of Germany, where consent is
required, that they admit that 10 per cent are missing and reports
have it in fact that the reporting completeness is about 50 per
cent of the cancers which actually occur. The only reason they
know is that they can take deaths in Germany, take the mortality
ratios from Holland and try to work out how many cancers there
are that way, which is a bit hit and miss. We have an enormous
interest in not going down that road, because if we do we shall
ruin the whole database. The alternatives are either to make implicit
consent, establish it as an acceptable and legal way of obtaining
data on cancer patients or to make cancer a notifiable disease.
566. Thank you very much indeed. As we have
time, may I just ask whether, representing cancer registries,
you have any comments to make on the Data Protection Act and any
impact that might have on the work you do?
(Dr Davies) Yes, the wording of the Data Protection
Act is such that it allows these concerns to take effect. In essence
they say a patient is allowed to refuse to have their data recorded
and of course people are reading that as they therefore must be
asked so they can express refusal, unless the Secretary of State
makes an order that cancer registries can go about their work,
but the Secretary of State has not done so.
Dr Jones
567. We also heard during one of our visits
that the current registration is not as good as it could be because
patients are not followed through sometimes, that they are only
followed for a short period of time. Is that your experience?
(Dr Roche) No. We certainly follow up in terms of
mortality for every patient registered with cancer. What we do
not do is record any other complications of cancer in the meantime.
The system is not perfect, it needs further investment, it needs
improving. May I just end by saying that we do understand the
concerns about confidentiality and patient consent, but we believe
that if the cancer registration system were destroyed, it would
actually be to the detriment of current and future cancer patients.
Chairman: Thank you very much indeed. Time is
up but may I just say that I asked you the question about the
Data Protection Act because from the evidence we have already
taken we know there are some difficulties. You have confirmed
the views we already have and we shall be taking note of that
very point in our report. Thank you for your evidence.
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