Select Committee on Home Affairs Minutes of Evidence

Examination of Witnesses (Questions 236 - 239)



  Q236  Chairman: Thank you very much for coming to give evidence to us this morning. As you will know, this is one of a number of hearings that we have been holding under the broad heading of "A Surveillance Society?" taking our cue from a report from the Information Commissioner last year. We are very grateful to you for coming to give evidence and to share your particular expertise with the committee. For the record, would each of you introduce yourselves?

  Professor Dezateux: I am Carol Dezateux. I am a professor of paediatric epidemiology at the Institute of Child Health, University College London, and I am also an honorary consultant paediatrician at Great Ormond Street Hospital for Sick Children.

  Professor Wessely: I am Simon Wessely. I am Professor of Psychological Medicine at the Institute of Psychiatry at King's College London, and I am here on behalf of the Academy of Medical Sciences.

  Dr Forbes: I am Ian Forbes. I am a social science consultant and an Associate of the Institute for Science in Society at the University of Nottingham. I am also here partly representing the Royal Academy of Engineering.

  Q237  Chairman: Can I start with a question to Professor Dezateux and Professor Wessely. One of the things that you argue very strongly about on the accumulation of databases is that they have been of very public benefit and there have been gains to public health from the use of personal data for medical research. Could you indicate very briefly again what those benefits have been but also what you think the benefits might be in the future, looking at the databases and the science?

  Professor Dezateux: Thank you for this opportunity to talk to you about the benefits of using patient data, which is sometimes called secondary research because it is using information about patients rather than necessarily contacting them. Really, without patient data, we would not be able to obtain the evidence on which improvements in health care have been based over some decades now. There are five groups of research that benefit from using patient data. Firstly, by using such data, we are able to identify causes of disease reliably. That is very important often for public health questions but also in terms of allowing us to move forward in ways to finding treatments. Secondly, it allows us to identify effective treatment precisely, quickly and in the longer term, and also to look at the potential adverse effects of treatments, which are often much harder to study. Thirdly, it is absolutely essential to have access to this kind of data to provide any public health monitoring in terms of control of infections and epidemics and pandemics, and also for us to be able to understand the effectiveness of any interventions, either at a health service or at other level, that are designed to control and constrain any epidemics. This leads on to the fourth point, which is really about patient and public safety. I do not think we can over-emphasise to you the value of this infrastructure in terms of being able to answer quickly, reliably and precisely in response to concerns about safety of medicines, safety of environmental issues or safety of vaccines. We can give you lots of examples of this. It is always the thing that you have not thought of that comes up and knocks you on the shoulder. Unless you have an infrastructure that allows you to do this, you are very disabled as a society in responding competently to these concerns. Finally, without the ability to look at patient data, we cannot evaluate how well our health services are doing and how well they are doing relative to one another. That needs high quality data that is complete and that that is given priority in the health service. What I would want to say really is that although these are called secondary uses, these are addressing primary functions of a health system where to protect and promote the health of our population, we want reliable information. In fact, we would not want to be looked after in a health service that did not provide an opportunity to learn from the data that we have collected and constantly improve health care.

  Q238  Chairman: You will have seen the signs in the House of Commons on the way in that it is to be smoke free from 1 July. Is it fair to say that probably that sort of public health change would not have come about without the sort of analysis of patient data that you are talking about?

  Professor Dezateux: Yes, that is an absolutely wonderful example. The original observation by Sir Richard Doll linking smoking to lung cancer relied exactly on patient data. As we have gone through the whole tobacco control process, it has been informed at every stage by this kind of data, and now we are looking to using this kind of data to see whether we are getting the correct response and results to this kind of intervention, and whether there are any sectors of society that are being excluded or who are continuing, for example children, to be exposed and where perhaps we need different measures. It is important to think about these things in a dynamic way, and smoking is a very good example.

  Q239  Chairman: Professor Wessely, in the Academy of Medical Science report, a reference was made to "inappropriate constraints on the use of personal health data". Given all of the positive things that Professor Dezateux has told us about the use of this information and data, what do you regard as the inappropriate constraints?

  Professor Wessely: What we meant by that is that there is a framework that allows this kind of research to go ahead, a very well worked out, ethical, legal and governance framework, but there are times when many people are intimidated by things like the Data Protection Act or the common law, usually we found through ignorance of the legislation, and do not allow research to go ahead. Our studies of cancer in Gulf War veterans, for example, had great difficulties in being done because people felt they could not release data from cancer registries. It took about three years to overcome that. That is our general point. We have a well-established, very careful—possibly over-cautious—governance framework to allow this, but we found innumerable examples of good research that was being impeded by people's ignorance of things like data protection, although to be fair, if you read the Data Protection Act, which I had to do, that way madness lies. It is not written to make it easy, but in fact it is a perfectly sensible piece of legislation that, if you work it through, allows proportionate invasion of privacy for public health research, but you would not know it if you read it.

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