Select Committee on Science and Technology Minutes of Evidence


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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