Examination of Witnesses (Questions 500
- 517)
TUESDAY 8 MARCH 2005
DR JAMES
GOODWIN, DR
IAN NOWELL
AND PROFESSOR
ROBERT SOUHAMI
Q500 Baroness Hilton of Eggardon: They
seem to make rather controversial decisions sometimes.
Professor Souhami:
Yes, but controversial means that there are probably arguments
on both sides and sometimes we would have pushed the argument
more one way. I do not think there is a serious, fundamental problem
in getting the evidence presented to people who wish to make decisions.
You may have to argue about whether decisions are right but, to
go back to your question, namely the relationships with other
governmental departments, they are very good. I would like to
stress the creation of the National Cancer Research Institute
yet again, which may be something that the inquiry would be interested
in. In my judgment, having been around in cancer research for
a very long time, I think the creation of the National Cancer
Research Institute has been one of the best things that the United
Kingdom has done in terms of pulling together funding agencies
around a common cause. What was really important there was that
the Department of Health and the government injected a small but
sufficient amount of cash into the National Cancer Research Network
and the National Translation Cancer Research Network to lubricate
the research process and its translation into therapeutics. It
was not a huge amount of money, £20 million or so a year,
but it was incredibly important in terms of getting the whole
structure going. I have felt that this has been very helpful for
cancer research and indeed the success of this led to some of
the UK clinical research collaborations. These structures are
important. They do push people forward. They do focus minds, in
my judgment.
Dr Goodwin: It is
interesting to note that there will be no analogous body in terms
of ageing research and the reasons for that are partly historical,
but are also because the nature of ageing research is eclectic
and much more diffuse. The various bodies which fund research
have widely differing interests. That, in many ways, means that
it is more imperative that we have such an organisation and the
strategic direction in order to do that, because if we do not
have that, with funds attached to it, we are going to have the
maintained fragmentation of ageing research in universities and
research institutes which is going to make life very difficult,
to see the kind of progress which we have seen of the paradigm
of excellence which you have in the National Institute on Aging
in the USA.
Q501 Lord Turnberg: You
are an advocate of bringing it all together in a network of funders
and organisations.
Dr Goodwin: You
have to be cautious. I do not want to apply too much academic
direction when the researchers themselves who are at the cutting
edge of research are the people who decide the research questions.
In terms of direction, if we look at the NIA, they have their
four goals which they have maintained over the last five years
and which have added greatly to the quality and direction.
Q502 Lord Turnberg: Cancer
research networks do not have people telling them what research
to follow so that would not come into it. It sounds as if that
is not easy to do for some reason. Is that something to do with
the organisations that are involved in this area, that they are
not eagerly collaborating or cooperating? Should we in this Committee
be saying something about that?
Dr Goodwin: There
is a degree to which the research councils are collaborating in
so far as the Funders Forum have all invested an interest in the
New Dynamics of Ageing. What we do not have is a strategic umbrella
of objectives which have been set, but in a sense there is ownership
there and sustained, long term funding by which those goals can
be followed. I do not think there is any absence of enthusiasm
amongst the research councils themselves for research on ageing.
What we need is somebody to bang some heads together and make
sure that the funding, the infrastructure and the direction are
there to promote the kind of excellence in research that we would
like.
Q503 Lord Turnberg: It
is not just the research councils, is it? There is research into
ageing and other organisations.
Dr Goodwin: Yes.
There is also the private sector. We have very good relationships
with the private sector, with British Telecom, British Gas, Unilever
and Pfizer. They come to us for advice on the directions in which
older people as consumers of research would like to go. There
needs to be full ownership of that institute. I would agree it
is not just the research councils.
Q504 Lord Turnberg: I
presume your organisations have reached a set of research priorities
in the areas we are talking about. I would like to know a bit
more about whether you have done that, how did you do it and how
do you go about ensuring that your priorities are fulfilled?
Dr Goodwin: In terms
of setting research priorities, we have very good relationships
with the academic community. We core fund the Oxford Institute
on Ageing. Equally, we support many researchers in many universities.
We have a very good relationship with the directors of the five
institutes of ageing. We have a research advisory council which
consists of eminent academics and we have good relationships with
the National Collaboration on Ageing Research and the Funders
Forum. Also, we have a listening strategy which can inform our
research process. Our research priorities fall into two areas,
both strategic and academic. In terms of the strategic aims, there
are three. One is to produce a statement for government as a national
priority of ageing research and, with that, to increase the availability
of funding. There needs to be a step change in funding to achieve
the aims we want to see. We need greater strategic direction in
order to defragment ageing research. That would be our strategic
approach. In terms of our academic approach, I would remind the
Committee that the UK government is a signatory to the International
Plan for Ageing 2002, in two areas which were specified then as
being of exceptional importance for the determinants of healthy
ageing and basic, biological mechanisms of ageing. Both of those
form part of our research priorities. In terms of Help the Aged,
we have committed ourselves to the world ageing survey which is
being carried out by the International Association of Gerontology.
In terms of age-related disease prevention, two particular areas
come to mind. One is cognitive decline and dementia. We fund work
in both those areas. The NHS spends in excess of £14 million
a year on dementia, and cognitive decline is very important to
us. Another area for us is incontinence. It is a Cinderella area.
Six million older people suffer from incontinence. It is an area
in which there is low capacity. We have had a funding programme
for that over the last two years, which is going on for another
four years, in order to build capacity and quality of research.
Fourthly, it is the effectiveness of treatment for older people
about which we are especially concerned. Again, that is a translation
issue in terms of how these findings get themselves into the lives
of older people.
Dr Nowell: Our research
priorities very much are corporate priorities. In that sense,
we will commission research which reflects helping us achieve
those priorities. All of them are very much outward facing in
terms of looking at enhancing income in later life, tackling age
discrimination. Sometimes there will be commissioning research;
sometimes we will be developing a partnership relationship; sometimes
it will be joint applications through case awards which, for us,
seems to be a particularly helpful programme. An area that we
have been looking at is developing links with the main research
clusters so that we can engage with those clusters and enable
local Age Concerns to play a more significant role on the research
agenda at a local, sub-regional level. We look at the corporate
priorities. They are determined by our board of trustees. They
are informed by the views of older people and on that basis we
will then commission and undertake our research strategy.
Q505 Lord Turnberg: How
much money do you put into research each year?
Dr Goodwin: We spend
about £4 million a year on the science of ageing and we have
just launched a £20 million appeal which will be for the
next five years.
Dr Nowell: Ours
is much less significant than that. For our commissioning of research
and our partnership work it is probably of the order of £200,000
or £300,000. We have significantly supported in addition
to that Age Concern research services which initially has a third
to half a million to pump prime over two years, and then we are
looking for it to be self-sustaining.
Q506 Lord Turnberg: I
wanted to ask CRUK a question. You mentioned that at the moment
it has low priority in your organisation, the research of cancer
in ageing. Do you have people in your organisation who have particular
expertise in this area, either in those setting the policy or
doing the work, and would it be helpful if we made such a recommendation
to you?
Professor Souhami:
In the current CRUK structure for setting research priorities,
there is nobody whose specific academic research interest lies
in cancer in an ageing population and the problems associated
with it, either biologically or therapeutically. Would it be helpful
to make a recommendation? It would certainly be something which
the organisation would want to consider very seriously, yes, not
just for Cancer Research UK but for the National Cancer Research
Institute as well. This is not a matter for CRUK alone, although
we are obviously an important partner in NCRI. There is the MRC,
the Department of Health and other people. The situation is that
the only criterion for funding within CRUK is research excellence.
There is no point in people applying to CRUK for funding bad science.
We turn down 74 per cent of all requests for funding. 26 per cent
get funded. The only criterion for funding is that your peers
both at home and abroad think that this is good science. It is
no good saying you want to do research into ageing if you do not
have good people who are doing good science. It is just a waste
of time and it raises a lot of false expectations. You have to
be very careful about that. There is nothing special about ageing
from that point of view. When I mentioned earlier the question
of research into palliative care or the research into radiation
oncology, the problem has been the shortage of expertise. It is
the opportunity problem. You go right back to this issue of training
and creating people who understand these things. There is nothing
special about cancer in that respect. It is the same everywhere
you look in biomedical research. It is not just a question of
saying, "Let's do some research in ageing and ageing related
to cancer"; it is a question of, "Let's do some first
class research in that area." Within the organisation, we
have a scientific executive board and the funding committees report
to that in basic science, clinical science, translational science
and population and behavioural science. The distribution of cash
into those different areas is something that is constantly revised
and updated. It is a continuing process inside the charity. Essentially,
that is all we talk about when we are looking for opportunity,
for new things coming forward, for deciding where technology opportunities
lie. That is being quick on your feet really. If ageing research
comes into that, the first thing it has to do is to show that
it really can compete with other high quality science. If it is
not good science, it will not compete with stuff that is good
science.
Q507 Chairman:
Whose responsibility is it to see that there is sufficient expertise
for some of the major questions that may be left unattended just
because there are not good scientists across the range?
Professor Souhami:
Do you mean in cancer generally or in ageing?
Q508 Chairman:
Across the range.
Professor Souhami:
It is the responsibility of all the funding agencies to make
sure that takes place. Big steps have been made in that with the
question of considering medical and scientific careers and making
them stable, which you have to do in the first instance, and then
you have to influence what those careers are about by making funding
opportunities available. You can lead the process up to a point.
You can say, "There will be money in this domain if there
are good ideas." That is about as far as a funding agency
can go.
Dr Goodwin: I would
reiterate that it is the absence of a sound career structure for
scientists who wish to go into the ageing research area that is
the big impediment to maintaining quality and quantity. Unless
we have a sustained programme in scientific ageing of research
funding, we are going to be in very difficult circumstances in
15 to 20 years' time when the current tranche of researchers are
reaching the end of their careers.
Q509 Chairman:
We see the problem; I am trying to establish whose responsibility
it is.
Dr Goodwin: In my
view, it is the responsibility of all the funding agencies. In
terms of ageing, that is very much more diverse than in terms
of cancer UK, but we all have responsibility for that. Someone
has to take a lead in this.
Dr Nowell: I would
come one step further back which is looking at the educational
establishments as well in terms of ensuring that aspects of ageing,
demography, are part of a whole range of processes, not just the
professional courses for the medics and the related professional
disciplines but for a much wider range of undergraduate and postgraduate
courses. We do not make ageing exciting. We should be able to,
because it is exciting. Even if you have the resources and the
commitment of the research councils, if you do not get anyone
interested and if you are not exciting the people who are going
to be the cream in terms of the education system, it is not going
to make a huge amount of difference.
Professor Souhami:
Might I add a rider? At the time when Cancer Research UK was
formed from the two previous charities, we decided to set up a
training and career development board for precisely the reasons
that you are alluding to, namely to make sure that we did not
have gaps, as far as it was in our power to do that, in the training
programmes of young laboratory scientists and young clinical scientists.
That gave us quite a lot of strength in dealing with both universities,
in making sure that job plans were right in universities, and
in dealing with the Royal Colleges, in making sure that we were
seeing things in the same way that the Royal Colleges were seeing
them in terms of career structures, particularly in the case of
clinical career structures. That focus on training and career
development is actually an essential part of a funding agency's
remit. Unless you make this a special activity which has its own
financing and its own way of thinking about training and its own
expertise, you lose it in a rather random process of funding.
Q510 Lord Drayson: We
have heard from a number of witnesses to the inquiry of the prevalence
of ageism within society and how negative attitudes to ageing
make it more difficult to carry out scientific research in this
area, and restrict the ability of industry to meet some of the
demands that the ageing population sets. Is this something which
you have experienced in your organisations and, if so, how do
you overcome those problems?
Dr Nowell: To a
certain extent, for us it is much very about age discrimination
and ageism across society in that sense and it is one of our fundamental
campaigning areas. In fact, tackling age discrimination is there,
it is not just our responsibility, it is the responsibility of
society and individuals at large. Certainly we would be looking
to challenge some of the ideas that it is acceptable for older
people to live in poverty, receive poor healthcare, be excluded
and live miserable lives. That is part of the challenge for us,
raising that awareness. At the moment it may well be necessary
to raise it within the research communities as well in terms of
we do not think they are necessarily excluded in terms of age
discrimination and ageist attitudes. Our experience is that it
is pretty endemic right across society. For us, that is part of
it but also not only the campaigning, taking the opportunities
that the Commission for Equality and Human Rights offer us all,
for example, but also by promoting research into attitudes towards
older people and old age and certainly in terms of looking at
the stereotypes in this particular area that we are interested
in. It is partly about campaigning and partly about promoting
appropriate research and it is also developing and dissemination
of information, as I think I have mentioned before, just highlighting
that older people make huge contributions to our society. It would
be very, very helpful and raising more awareness of that would
be extremely positive.
Dr Goodwin: If I
can add an interesting element to this issue. When we have been
fund-raising within Help the Aged for ageing research, we have
found this is not easy. Our fund raisers tell us that if they
go to the general public for leukaemia or for childhood diseases
the general public's hand goes into the pocket and a ten pound
note comes out, but if you go to them for ageing research you
have to have a convincing argument in order to engage their attention.
What we have found is if you tie this to a condition of an age
related disease, like Alzheimer's or osteoporosis, that is entirely
more successful. The other problem we have met is that there is
a widespread negative attitude to old age as to why we should
be conducting research into ageing. Why should we conduct research
into a process which is going to lead us to decrepitude and lack
of independence? Therefore, there is a huge issue in terms of
educating the general public as to the possibility of healthy
ageing, not just the rectangularisation of the survival curve,
so that we are all going to get that much older but also we need
to compress morbidity so we live longer and die faster, in other
words. I think once the general public appreciates that 60 is
the new 40, that we are going to live healthier and we can compress
morbidity, they will have a much more informed and much more productive
attitude towards ageing research itself.
Q511 Lord Drayson: In
respect of Cancer Research UK specifically, if you put more emphasis
in your fund raising on the effects of cancer in the ageing population,
would that have a negative impact on your ability to fund raise?
Professor Souhami:
No, not at all. I do not think that would be a problem for us
at all. Having foresight of that particular question did make
me look at the images in the fund raising that Cancer UK uses,
and whether or not we put our money where our mouth is, as it
were. I think we are not too bad with that. The images do genuinely
reflect most of British society, but whether the images and the
fund raising reflect the proportions of British society which
are going to get cancer is another matter. In talking to our fund
raisers in advance of this meeting, because of that question,
there was no sense at all in which they felt that saying "we
wish to do research in cancer in the elderly" would be an
adverse or a detrimental thing for the charity, not at all.
Chairman: Time marches
on, but we have been interrupted a bit. I wonder if we can get
two more questions in from Lord Broers and Lord Soulsby.
Lord Soulsby of Swaffham Prior: I
think my question, my Lord Chairman, we have dealt with previously.
Q512 Lord Broers: This
is to do with the way cancers present themselves, and do cancers
of a particular type present in the same way regardless of age.
Is the prognosis the same? For example, does cancer in an older
person tend to be more or less aggressive and the therapies more
or less effective?
Professor Souhami:
I have given Mr Collon the statistics on that, which I photocopied
so that the Committee could have those. If I can take the last
bit first, there is no question that above the age of 70 the relative
survival from cancers diminishes in the elderly compared with
the decades below that. What is more, whereas the overall mortality
of cancer in the United Kingdom has fallen by 13 per cent over
the last decade, roughly one per cent a year, it has only fallen
by about one to two per cent in the over-70s; in other words the
advances in cancer mortality have not been equally distributed
across the age range. The answer is the prognosis is worse.
Q513 Lord Turnberg: Do
they die of cancer?
Professor Souhami:
That is the next question. If you look at the data, this is relative
survival after being diagnosed with cancer, so this is relative
survival compared with the population of the same age. Having
the diagnosis of cancer means that your survival is less compared
with at an early age but the question is, is it the cancer that
killed them or something else that then happens sociologically.
Could it be that people did not want to give them the treatment
they should have or, alternatively, if you have got cancer and
then you get some other disease, do they not want to treat the
other disease because you have got cancer. All of those things
would increase your relative mortality from having a diagnosis
of cancer. There are a lot of complicated questions in there.
You go right back to the question of research here because if
you want to disentangle that, that is quite a complicated thing
to do. That is precisely the sort of sociological research that
we need in order to understand the answer to the question that
has just been posed to me. The second point that you made—going
back in reverse order—was about whether cancer is specifically
more aggressive in the elderly compared with a young patient.
The answer is, not in general. Indeed, there are many examples
of it being the reverse, of it being rather benign and slow growing
in the elderly. Again, if you were to ask how much specific research
on aggressivity, however defined, related to age in the particular
tumour types that are common in the UK, there is very little to
guide us on that. Such research as there is does not indicate
that there is a global shift towards more aggressive cancer. The
worst mortality probably lies not there but in other aspects of
therapeutics in the elderly. As to your very first question, namely
whether it presents in the same way regardless of age, on the
whole, yes, it does but there is an interesting question, namely
is an elderly patient's response to a symptom that you and I would
regard as pretty serious the same as, say, in a younger age range.
Again, there is now quite good evidence that the delays in diagnosis
are more severe in the elderly and with detrimental effects. The
reasons for those delays and the reasons why symptoms are overlooked
are very complex, to do with people's prior understanding of what
cancer means and that is a thing that may change as years go by.
If you are talking about the population who are now aged 80 or
above, their experience of cancer may have been formed a long
way before, maybe 30 or 40 years ago. Again, the issues of presentation
and going to your doctor in the elderly are extremely important
issues. Clinically cancer presents in the same way, a breast cancer
presents in the same way whether you are 80 or whether you are
60.
Chairman: We think
there is going to be another division any minute, but I wonder
if Lord Drayson could give us the last question.
Q514 Lord Drayson: This
afternoon you touched on your view, as I noted here, that there
are some differing interests within ageing research in the UK,
and "fragmentation" was the word Dr Goodwin mentioned.
What lessons do you think the success that Cancer Research UK
has had could be applied to research for the ageing, in particular
the excellent move the two cancer charities made in coming together?
Without wanting to put Help the Aged and Age Concern on the spot,
I wonder if you would comment on whether you think ageing research
in the UK could learn from what has been done in cancer research,
Professor.
Professor Souhami:
I do not want to put people on the spot either.
Q515 Chairman: We
do not mind, go ahead.
Professor Souhami:
Again, I had forewarning of that question. When the merger was
first put forward for Cancer Research Campaign and Imperial Cancer
Research Fund, we looked at the portfolio of research that was
funded by these two prior organisations.They were doing identical
things. The two organisations were indistinguishable in the proportions
of money they were spending on epidemiology, on social research,
on basic biology or therapeutic research. There was not a scientific
reason, or a structural reason, in terms of their objectives as
to why these two charities should not merge. They funded the research
in slightly different ways—one funded largely in response
mode through universities, that was CRC, and the other largely
through its own in-house organisations—but the principle
behind it was the same. Once you had taken the step that you wanted
to be a single charity there was not any logical reason why research
should not continue in exactly the same way as it had done before.
Had it been the case that one charity was funding entirely social
or clinical research and the other basic research, I doubt if
the union would have taken place because people would have seen
that a lot of work would need to be done to make those two things
compatible, but that was not the case. I think one has got to
be very careful before believing that necessarily a union of charities
always leads to success. The groundwork has to be done and the
basis has to be correct.
Q516 Lord Drayson: What
would you say are the top two benefits that have accrued?
Professor Souhami:
That is relatively straightforward. The first has been that the
public responded to it enormously favourably. One did not know
that at the time, the merger was a character building exercise.
It was not clear that it was not going to go seriously downwards
but, with the benefit of hindsight, the public suddenly realised
that there were two cancer charities and they did not really understand
why there were two, and now there was one in place, so that was
very, very beneficial. I would like to give three benefits. Speaking
personally, the second thing was it gave us much more clout with
Government and universities and so on. If you want to get careers
organised we are now a major funder of careers, you can talk to
universities and stare Vice-Chancellors in the face and tell them
what you want. The third benefit is the kind of research we are
funding is extremely expensive in terms of kit, and both the two
former charities on the world stage were too small to be funding
in the way in which they wanted to fund. The funding is still
too small actually but we are not as small as we were. If I can
have three benefits, those would be the three.
Dr Goodwin: In terms
of the charitable sector across the UK, there are more organisations
involved in funding ageing research than Age Concern and Help
the Aged. We have a Funders Forum of six charities, including
the Wellcome Trust, and their interests are very diffuse because
they do not only look at ageing. For example, the Nuffield Foundation
funds some ageing but it has a substantial portfolio and, therefore,
it is a member of the Funders Forum. As far as Help the Aged is
concerned, we are members of the Association of Medical Research
Charities which means that we fund high quality peer reviewed
research in an academic sense in the science of ageing and older
people, that is our focus, and also implement an international
direction of research. I think Age Concern has a slightly different
approach to research from that.
Dr Nowell: If I
put myself on the spot that you may or may not have wished us
to be, it seems to me that there is an issue in terms of merger
and I think research is but one of the areas of interest. The
bottom line basically is what is the benefit for older people.
I think Professor Souhami has very clearly demonstrated that there
will be benefits for the community at large by that particular
merger. In terms of Help the Aged and Age Concern, there are benefits
from having two national organisations that campaign. You have
a bigger influence on putting ageing issues and older people on
the agendas of a whole range of stakeholders. Also, you probably
have a greater impact in terms of fund raising than if you have
one merged organisation. I think it is actually the case that
we do work together very effectively on a range of issues where
it is of mutual interest. Elder abuse is but one, local forums,
engaging older people in local communities, is another area. There
are substantial differences. I think you have been hearing, hopefully
quite clearly, that there is quite a different emphasis on why
and how we do research which is complementary, it is not doing
exactly the same thing in the same way. On the other bit in terms
of areas which are very different, part of our research is looking
at services delivered and developed by local Age Concerns for
older people, direct services, whereas Help the Aged by and large
does not undertake that area of activity, certainly nowhere near
to the same extent. Both organisations have looked at the pros
and cons of merger and we will continue to do so. It is on the
public record that Age Concern England's trustees are willing
to consider merger, so it is there. I do not regard it as being
put on the spot. The research does complement each other and perhaps
we can explore how we can develop that even more so.
Q517 Lord Drayson: Very
briefly, Professor Souhami, you said the single best thing that
has been done in the cancer research area is the creation of a
National Cancer Research Institute. Is there an analogy here that
the single best thing could be to create a national Age Research
Institute?
Dr Goodwin: My view
on that would be yes. If we look to both East and West, if we
look to Europe there is even less investment there in terms of
strategic development and funding research, and if we go in the
other direction, and look at the United States, there are highly
successful programmes, a high order of investment with good strategic
direction. I think we can take the best of that and apply it to
the British scenario and produce a substantial and more effective
portfolio of peer reviewed research by that means.
Chairman: May I say we have beaten the
next division to the conclusion of the answers. Thank you very
much indeed. If there are additional points that you feel you
either wish you had made or that occur to you afterwards, do not
hesitate to email or write to the Clerk of the Committee or any
one of us. Again, we much appreciated your written contributions.
Thank you very much indeed.
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