Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 500 - 517)



  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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