Select Committee on Science and Technology Minutes of Evidence

Supplementary letter from Professor Peter Burney, Professor of Respiratory Epidemiology and Public Health, Imperial College, London

  I promised a further brief note on the current problems of undertaking epidemiological research.

  The principal difficulty is in accessing good representative samples of the population at reasonable cost.

  Previously this was possible by accessing the names and addresses of people registered with general practices. A computerised list of these was kept together with sex and date of birth by the health authorities and age- sex-specific samples could be drawn by post code. No clinical information was kept on these files. Other sources such as electoral lists were more limited and less complete and are even more so now.

  Although use of these data was acceptable to the public, the data are now regarded as not only confidential but also "sensitive" and access is denied.

  The nearest alternative now is to approach individual General Practices and invite their collaboration. The first difficulties with this approach are:

    1.  General practices that refuse (for many different reasons) are not the same as those who do not and so samples are often unrepresentative. Particularly in research into health care this can be a fatal problem.

    2.  Even if it were possible, it is far too expensive in time and resources to approach all GPs and get small samples of patients from each. Studies therefore need to be of a "clustered" design and this leads to loss of power, or the need for larger more costly studies.

  However, even if general practices are in principle willing to help they are very often unable to. Under the current arrangements they have to write to their patients to ask whether they are willing to participate and this involves 1) drawing an appropriate sample (which they are generally not qualified to do), 2) printing out the letters and posting them (a process that requires not only time but space), 3) marking off those who have replied and 4) sending reminders to those who have not.

  Under the current rules, because we cannot have access to the names and addresses until the patients have replied to say that they are willing to participate, we are unable to help with any of this process. For a busy general practice this is all but an impossible task and it is amazing that we have any volunteers. In addition we have none of the valuable information about the age, gender and postcode of the non-respondents.

  In all of this I see a large scale repeat of the legal nonsense that held up anonymous testing for HIV and any chance of understanding the spread of AIDS in the UK for some years. What we need is permission to use the names and addresses of patients registered with GPs together with their dates of birth and gender providing:

    1.  The programme of work, including the letter of invitation to participate and questionnaire, has ethical committee approval.

    2.  The staff are adequately trained and have honorary contracts with a health authority or trust.

  PIAG was asked to allow us to take on some of this work for a particular project either outside the surgeries or sending our staff into the surgeries to help. This would have been only a partial solution at best but was turned down on the grounds that the study was "too small" to warrant an exception. That is a judgement that in my view PIAG was not qualified to make. The relevant perception of the size of the problem is that of the general practitioners and they certainly saw the problem as one that made their participation impossible.

  Further absurdities are also now creeping into the research governance. Recent advice to us about a questionnaire survey included an injunction to send a separate consent form with the questionnaire and a separate letter and "patient information sheet". These may seem simple requirements, but there is a world of difference between sending a two page questionnaire with a letter giving a brief explanation and asking the recipient to fill it in return it, and sending a legal document with an extensive "information sheet" with what many of the public would see as "small print" and asking them to "sign" that they have agreed to the "small print".

  The upshot of all this is that we are organising a European wide survey of allergic conditions this summer and may well not be able to comply with the survey design ourselves. The irony is that a properly designed and well vetted study to improve our knowledge of public health is forbidden, but any company can ring me up at home and conduct surveys or try and sell me whatever they please. If your committee were able to find a solution, this would be greatly and widely welcomed.

10 January 2007

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