Examination of Witnesses (Questions 20-39)|
WEDNESDAY 12 DECEMBER 2001
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
(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
(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
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
(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.
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
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.
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
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.
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
(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
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.