Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 20-39)



  20. Good; thank you. Perhaps you could just describe PIAG for us, and particularly who sits on it?
  (Professor Sir John Pattison) We do have, amongst our papers, the full list of membership. It is chaired by Professor Joan Higgins, and the members are Dr Michael Catchpole, Professor Sir Cyril Chantler, Dr Tricia Cresswell, Mrs Helen Darracott, Professor Andrew Haines, Mr Michael Hake, Ms Barbara Meredith, Ms Helen Miller, Ms Julia Palca, Professor Sir Denis Pereira Gray, Mrs Shahwar Sadeque, Ms Karen Thomson and Dr Michael Wilks.

  21. Some of those names are familiar to us, but could you perhaps describe their backgrounds, broadly speaking, where they are coming from?
  (Professor Sir John Pattison) I think that, in the setting up of the Patient Information Advisory Group, one of the careful and painstaking pieces of work was to try to get quite a diverse membership of the committee, whilst at the same time keeping the size of the committee within reasonably workable limits. There are 14 members of the committee, and that is judged to be a membership which is fit for purpose and easily manageable. Michael Catchpole is a consultant in public health medicine, Cyril Chantler is Chairman of the General Medical Council's Standards Committee, Chairman of Great Ormond Street NHS Trust as well. Dr Tricia Cresswell is a consultant in public health medicine and Associate Director of the Northern and Yorkshire Public Health Observatory. Mrs Helen Darracott is Head of Professional Ethics at the Royal Pharmaceutical Society. Andy Haines is Dean of the London School of Hygiene and Tropical Medicine and a practising GP. Mr Michael Hake is Director of Social Services at Solihull. Barbara Meredith is Policy and Communications Manager for Age Concern. Helen Miller is a clinical marketing consultant. Julia Palca is a solicitor, specialising in privacy, confidentiality and data protection. Sir Denis Pereira Gray, also a general practitioner, but currently Chairman of the Academy of Medical Royal Colleges. Mrs Shahwar Sadeque is an Education and IT consultant and a member of the Royal College of Physicians Committee on Ethical Issues in Medicine. Karen Thomson is Senior Policy Officer at Diabetes UK. And Dr Michael Wilks is a Principle Forensic Medical Examiner for the Metropolitan Police.

  22. Thank you. Bringing you back to the timescale of this, the Act was passed in May 2001, but PIAG only met, I think, Monday?
  (Professor Sir John Pattison) Correct; yes.

  23. Could you account for the delay?
  (Professor Sir John Pattison) I think, in a way, the delay is due to the fact of going through a proper procedure of constituting the membership of a committee, inviting a number of bodies to make suggestions about who should be considered for membership and inviting applications for membership, and then going through a Nolan procedure, making recommendations to Ministers, getting their agreement, and then holding up the announcement, and this was one thing that people did comment on, of the membership of the committee, until we had actually heard from everybody who was going to be on the committee that they would actually serve as members. And once everybody had responded then the committee was announced, and we were already planning for the meeting on 10 December, Monday, ahead of knowing what the membership of the committee was, because we were determined to get at least one meeting in before the end of the year.

  24. Thank you for that, that puts it into a context; but, nevertheless, there has been a delay. Can you make an assessment of the damage that might have been done, as a result of that delay, to our ability to collect data, and what implications that might have for cancer research in this country?
  (Professor Sir John Pattison) The honest answer to your question is, I cannot yet make an assessment of any damage that may have occurred. I would like to make just one or two comments though. And that is that I think it is quite natural and understandable that a lot of people were concerned about the effect that the Data Protection Act, the common law of confidentiality, which is really what underlies this, not so much the Data Protection Act, and various statements by the General Medical Council, as you said, amongst others, would have on this. So there was a natural anxiety to get everything in place more or less overnight. It is just not possible to do that. Parliament passed the Health and Social Care Act, which reserved powers for the Secretary of State, but required always the Secretary of State to take into account the comments of the Patient Information Advisory Group in any decision he made. However, it is my view that, having been associated with this most particularly for the last six months, even before we have, as it were, the first regulations laid before Parliament now, because that was a requirement of the Health and Social Care Act, that the GMC have moderated their statements about this. And I also think that, most importantly perhaps, the Information Commissioner, who, I think, in many respects, had given us the impression that, if everything was not in place by October 1, 2001, certain things would have to stop. I have only met the Information Commissioner three times, but on each occasion that was not her view. And, again, I go back, the anxiety is understandable, but I think actually that we are not determined to bring lots of things to a halt before we actually have the Secretary of State taking powers unto himself. And so I think the damage is not going to turn out to be as severe as some of the predictions. But, again, let me come back. My honest answer to your question is, I cannot assess it at the moment, I do not know whether Professor Richards could comment.
  (Professor Richards) No. I would agree with what you have said. I think the concern in the Cancer Registry community has been to make sure that we do get this regulation and that it is put before Parliament, so that we have security on the position. But, I think, to a very large extent, the information is still coming into Cancer Registries, there may be one or two places where that is not happening, but it is being held at the trust level until things are more clear; but I cannot quantify that for you.

  25. I think that is an important point. So you are saying that, certain trusts, their Registries are not working, or they are not contributing to those Registries?
  (Professor Richards) I am saying that that may be happening. I do not have hard evidence that that is happening, I am saying it may be happening, but I do not think that we will lose the information, even if that is happening, because it is still being held by the trusts.

  26. Right; so you say once the regulation has come in then you would see that lost ground being made up?
  (Professor Richards) If that was the case, that they had been holding it back, they would then be able to make it up.

  27. Okay; that is grand. Because another concern I would have, as a scientist, is that, presumably, when you get piecemeal missing data in that kind of way it skews the whole picture, so the use of your data overall, for the country as a whole, is going to be less reliable if you have got little bits missing?
  (Professor Richards) There is absolutely no doubt that we all agree that we want complete and accurate data on cancer incidence and the treatment for cancer, and, I believe, through a number of measures that we are taking, including what I was mentioning earlier about the improvements we are making to Cancer Registries, that we will actually have better cancer registration in the future than we have ever had before.

  28. And the regulation that you anticipate, resulting from all of this, how would you like to see that phrased?
  (Professor Richards) I cannot go through the wording now, because I have not brought it with me, but I know that the advisory document that the United Kingdom Association of Cancer Registries has helped prepare is, in my view, a highly satisfactory one; and that then has to get turned into legal language by counsel.

  Chairman: Can we move on a bit, because I am very aware, Dr Murrison, that we have got other people, in other areas, we want to get at, and time is moving on sharply. Can I turn to Dr Turner, please.

Dr Turner

  29. Professor Richards, we were, as a Committee, very conscious of the importance of translational research, and glad, of course, that the Translational Cancer Research Centres are to be set up. But, at a funding level of £200,000 a year for each centre, we have to wonder whether that is enough to do anything with, because it seems to be virtually peanuts. Do you think this is enough to achieve anything?
  (Professor Richards) I think we will be able to achieve a lot with it. Remember that that is not the basic funding of those Centres, those Centres are funded from a variety of different sources, including MRC funds but also including funds from the cancer charities, now from Cancer Research UK, as of yesterday, I suppose. But this will facilitate the collaboration between Centres, that actually I think will be extremely valuable, in terms of getting the results of laboratory studies into clinical practice. And I know that they are currently going through an application process, and I know a lot of interest has been shown and a large number of applications have actually been received to become designated as collaborating Centres within that NTRAC initiative.

  30. Can you tell us how many new Translational Research units have actually opened during the last year, where they actually fulfil the requirement of having basic research and clinical facilities cheek by jowl, and can you tell us how they are being funded?
  (Professor Sir John Pattison) In fact, we are not at that stage of the process yet. What has been done since we last met is that we went out to procure the National Co-ordinating Centre of the National Cancer Research Network, and during that process we felt that we had two bids, one of which was particularly appropriate to the phase 3 trials, and other well-designed studies, and that went to the Universities of Leeds and York, led by Peter Selby. We felt that another group, which was led by David Kerr and based around Oxford, was the appropriate one to be the National Co-ordinating Centre for the Translational Cancer Research. During that time, of course, David Kerr moved himself from Birmingham to Oxford, which is an event in any scientist's life that is not without some downtime, as it were; he has, however, put out an advertisement, responses have come in, and those are being considered at the moment. And if I could just go back to the previous question about the small amount of funding; of course, the reason that this is attractive to people is it is core funding which has got a five-year duration, with an expectation of a further five years, if all is going well, at the four-year review. And that sort of core funding, which is envisaged to be there, quality allowing, for ten years, is the sort of funding that people find extremely valuable. And it is to strengthen the core around which a lot of the projects and programmes funded by others will be built.
  (Professor Sir George Radda) Could I just add that, of course, in the meantime, other things have happened in the Translational Research area, and one of the major developments has been the opening of a new Cancer Unit, in Cambridge, on 1 April 2001, under the directorship of Ron Laskey, in combination with CRC. The MRC commitment to that is £5 million over the next five years, and the CRC commitment brings the total invested to about £12 million, and we have put £10 million into a new building, as part of that. And the major initiative at the moment is to take the basic sciences of Ron Laskey, who is very much on the cell side of those expressions, into the clinic. So that is actually a Translational Unit joined between what was the CRC then and the MRC.


  31. Are there any others like that, or is that the major one you have set up, as a pilot?
  (Professor Sir George Radda) That is the major one we have set up.

Dr Turner

  32. Can I bring you on to Cancer Research Networks now, because there appears to be, from the evidence that has been submitted to us, a lot of confusion out there about them, some people are telling us they are well-established, others that they are not working at all. So can you clarify it for us, can you tell us how many Networks there will be, do you see any need to publicise them more, and will there be any significant additional funding available for the Networks to allow for the investment in staff and equipment that is needed?
  (Professor Sir John Pattison) The vision that we had was that there would be a set of Cancer Research Networks that maps onto the Cancer Care Networks, of which there are 34 in the country. It was always envisaged that, in terms of being part of the National Research Network, the locations would be at different stages of readiness; so we felt that there would be a roll-out of approximately eight, in the first instance, which was how it turned out, sorry, there were nine, actually, and then, six months later, another eight or nine, and six months later, and so on and so forth. So the full roll-out was envisaged to take two years. In fact, we are going to complete that ahead of schedule. We have actually a list which we could provide here for the Committee, if you so wished, which is colour-coded and would show you who was in the first wave, who was in the second wave; there has been a decision now to give core funding to many of the others, and there are only, I think, five that are judged still to be not quite ready to receive the core funding for the Cancer Research Networks. So I think, in fact, we are going to be ahead of our target, in terms of rolling out the Cancer Research Networks.

  33. I am sure that paper would be very useful. So can you tell me how this is going to mesh with the Calman-Hine Networks; are you saying now that the Calman-Hine Network is virtually complete, and will the Research Networks mesh with those Centres?
  (Professor Richards) Yes, it will. We have the 34 Cancer Networks for cancer service delivery across the country, on average, about four per current health region, and the Research Networks will map exactly onto those Service Networks.

  34. It would be rather nice to have a map of those, but DoH tell us that there is not one?
  (Professor Sir John Pattison) If this is a map in the shape of the country then we have not got one of those. But, seriously, if we were to draw a map, it would almost entirely cover England now, apart from one Network in Trent, one in the Eastern Region, one in the South East Region, and two in the West Midlands.

  35. Do you think there is any sense in distributing funding through the National Networks, both through the Service Networks and the Research Networks; have you considered this?
  (Professor Sir John Pattison) We do give core funding. The purpose of the National Cancer Research Network, which when it is fully rolled out at today's prices will be an extra £20 million into supporting the infrastructure to do clinical trials and other well-designed studies, to use our phrase, into advances in cancer care, so it is a central pot of money, and it is distributed on the basis of contracts between research and development and the various Networks.

  36. So directly to the Centres, no-one else gets their fingers on it?
  (Professor Sir John Pattison) Absolutely not.

  Mr Hoban: When the Committee took evidence in its previous session, Gordon McVie and Paul Nurse did not see the benefits of merging their two organisations.

  Chairman: I remember well what they said.

Mr Hoban

  37. Yet on 10 December they managed to do so. I think it is probably for Sir John; what benefits do you think this will bring, and in what timescales?
  (Professor Sir John Pattison) I think that what the two organisations were recognising was that there were growing scientific opportunities, and yet they found themselves, to some extent, competing in order to take advantage of those, most particularly, I think, for the sort of large-scale facilities, and perhaps most of all people that are skilled enough to take advantage of those opportunities. And so coming together like that, I think, almost has immediate benefits, as it were, but the real benefits, I think, are in the long term; there now is a single, very large body, which can have a single and coherent research strategy, which it can develop with other partners, most notably, now, the two Government arms of funding cancer R&D.

  38. Do you think there is a risk that this will actually limit the projects that they will look at, so rather than perhaps looking at, say, five each, that now the new merged organisation looks at fewer projects but can put more money onto them?
  (Professor Sir John Pattison) My view is the reverse, that there would be some economies from merging the organisations, so they are liable to be looking at more projects rather than fewer.

  39. Right; and just in terms of the impact of their merger on other cancer charities, do you see that as being a positive impact, or do you think it will be a negative impact on other charities, will they be squeezed out of the market?
  (Professor Sir John Pattison) It is not an area of expertise of mine, but it does seem to me that cancer charities, both large and small, continue to flourish, and I do not think it will have a negative impact on the smaller charities.

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