APPENDIX 26
Memorandum submitted by the London School
of Hygiene and Tropical Medicine
SUMMARY
Public health and epidemiological research on cancer
make a vital contribution to knowledge and to health policy-making.
They should be included in the Committee's deliberations.
The organisation and the funding of cancer registration
in the UK are also relevant to the inquiry. Cancer registration
should be co-ordinated and funded centrally, with a substantial
increase in funding, in order to secure the availability of timely
and accurate data on cancer incidence and survival in the whole
population.
The Government should clarify its position on
access to medical records for research, and on the registration
of cancer, under the Data Protection Act 1998.
Cancer should become a notifiable disease.
The Committee should seek comparative information
on national funding of cancer research by government and by the
voluntary sector.
The Committee should form a view on whether
the UK Government can expect to receive adequate public health
evidence on cancer, as an input into national health policy, given
its investment in this area.
INTRODUCTION
1. The London School of Hygiene and Tropical
Medicine is the largest school of public health in the UK, with
over 350 research staff and almost 700 postgraduate students from
more than 100 countries. It is a research-led institution with
over 50 per cent of its activities in the UK and other developed
countries. Total annual research income is about £21 million,
of which 75 per cent is won competitively. Research on public
health aspects of cancer is the focus of several research units.
CANCER RESEARCH
AND PUBLIC
HEALTH
2. Public health and epidemiological research
make a critical contribution to estimating the overall burden
of cancer and in helping society to respond to that burden. In
contrast to laboratory or clinical research, public health studies
focus on the whole population, or on representative samples, providing
information obtained directly from human subjects on the causes
of cancer, on its social and geographic distribution, and on the
outcome of its treatment. Such research is essential in enabling
strategies for primary prevention, screening and the organisation
of treatment services to be devised, and for the effectiveness
of those strategies to be monitored.
3. Public health research provides a continuously
updated picture of how incidence, survival and mortality from
cancer in the whole population are changing with time. Basic laboratory
and clinical research, including randomised controlled clinical
trials, provide new insights into the mechanisms of cancer development
and into the best cancer treatments. Without the public health
dimensions, however, the speed and efficiency with which the findings
of basic and clinical research are translated into effective cancer
prevention or treatment cannot be adequately evaluated.
4. From this perspective, we were struck
by the imbalance in the eleven topics specified in the inquiry's
terms of reference. These topics focus exclusively on basic and
clinical science, and the translation of this research into practice.
Public health is not explicitly mentioned. Yet the preamble to
the terms of reference defines the subject of the inquiry as "research
into the causes, prevention and treatment of cancer in the UK",
in which public health and epidemiological research play a vital
role.
5. In the past year, for example, government
has acknowledged that cancer mortality in the UK is too high;
that "people in more deprived areas tend to have lower survival
rates"; and that survival in the UK "generally lags
behind Europe and the United States of America". The evidence
for these conclusions comes from public health research, and it
has helped to set the high priority now being accorded to cancer.
In Saving Lives: Our Healthier Nation, the Government has
selected cancer as the first of four strategic health priorities,
and it sets a goal of 100,000 fewer cancer deaths under age 75
by the year 2010, through improvements in primary prevention (60
per cent), screening (20 per cent) and treatment (20 per cent).
This is just one current example of how public health research
provides scientific evidence on the burden and outcome of disease
in the population, thus directly informing policy development.
Many others could be cited: a substantial body of public health
evidence about the causes, prevention and screening of cancer
and the outcomes of treatment has come from UK institutions in
the last 50 years.
6. The Committee should include public health
and epidemiological research in its deliberations.
CANCER REGISTRATION
7. Cancer registries are a vital source
of public health information and of data for epidemiological research.
They are the basis for the widely publicised evidence that cancer
survival in the UK varies considerably between health authorities,
and between affluent and deprived patients, and is lower for most
cancers than in mainland Europe or the United States.
8. The organisation and funding of cancer
registration in England and Wales are directly relevant to this
inquiry. Chronic under-funding and the lack of strategic vision
from the Department of Health are largely responsible for the
fact that both regional and national cancer registries have had
great difficulty producing timely and accurate data on cancer
incidence and survival.
9. The UK has the largest nation-wide system
of cancer registration in the world, and (with the exception of
Northern Ireland) it has been in operation since 1962. Scotland,
Wales and Northern Ireland each has a cancer registry, and nine
regional cancer registries cover the whole of England. The cancer
registries contribute to regional, national and international
research projects, such as the World Health Organisation's quinquennial
compilation Cancer Incidence in Five Continents and the European
Union's international cancer survival programme (EUROCARE).
10. The Department of Health pays the operating
costs of the national cancer registry directly to the Office for
National Statistics, but the regional registries in England are
indirectly funded through the NHS Executive, and must compete
for resources with regional clinical priorities. The total annual
cost of cancer registration in England and Wales is not precisely
known, but it may be as little as £10-15 million a year.
More precise figures may become available with the report of the
fourth decennial review of cancer registration in England and
Wales, chaired by Professor Charles Gillis (Glasgow), which is
due to be published shortly.
11. Cancer registration in the UK is too
valuable as a public health resource for its organisation and
funding to continue in their current haphazard fashion: this is
the result of historical accident rather than strategic planning.
Without wishing to pre-empt the Gillis Report, we would suggest
that cancer registration in England and Wales should be co-ordinated
and funded centrally, with a substantial increase in Government
funding; that strategic goals should be set for the timely production
of regional and national cancer information; and that there should
be migration toward uniform procedures for data capture, especially
from all pathology laboratories, and toward standard software
for data manipulation.
DATA PROTECTION
12. The Data Protection Act 1998 incorporates
into UK law the EU Directive of 1995 on the protection of individual
data, superseding the 1984 Act. The 1998 Act represents a potential
threat to a vast range of epidemiological research. It is open
to the interpretation that all individuals whose cancer registration
records were required for public health or epidemiological research
would have to have given their explicit consent for the use of
their data. If this interpretation were to be enforced, it would
make both cancer registration and almost all cancer epidemiology
research effectively impossible.
13. Epidemiological research usually requires
access to (or the creation of) large identifiable databases for
entire groups of individuals, either to contact them for interview,
or to abstract clinical data from medical records, or simply to
include their data in the regional cancer registry. Whether the
target group is workers at a particular factory, patients with
a particular cancer or simply the general population, the requirement
for prior consent by each individual leads to selective exclusion
of data subjects and it renders the results meaningless. Such
consent would be impracticable for many studies, because the research
question arises from exposures many years in the past, and many
of the data subjects would be either dead or untraceable without
disproportionate effort. Examples include studies of war-time
exposures in the asbestos industry, studies of people who have
lived in areas thought to be exposed to a particular risk of cancer,
for example around Sellafield, or yet again studies of women treated
many years ago for infertility with regimes for which later research
suggests a risk of malignancy.
14. Previous guidelines explicitly permitted
access to medical and other records for bona fide medical
research purposes, without the subject's explicit consent, by
a research team working to a scientific protocol that had been
approved by the relevant research ethics committees. In national
studies, this has often meant securing approval from more than
100 ethics committees.
15. The Data Protection Act 1998 appears
to represent a radical departure from practice that has been in
operation in the UK for more than 40 years. The Act does allow
other interpretations, including the exemption of legitimate public
health surveillance research from the requirement for the subject's
consent, but the position is unclear, and objections have already
arisen to the conduct of some previously accepted studies on the
basis of local interpretations of the Act. Some cancer registries
have also reported increased difficulty in obtaining data. There
is a real risk to the continuity of cancer registration. The (ex-East)
German cancer registry, in operation since 1953, was forced to
close after reunification of Germany in 1991 because stricter
(ex-West) German confidentiality laws prevailed: the registry
has not re-opened.
16. It is vital that the Government clarify
its position on access to medical records for research, and on
the registration of cancer, so that the UK's internationally renowned
public health research in cancer is not fatally compromised. We
offer two suggestions.
17. The Government should re-establish the
principle of access to medical records for bona fide and
ethically approved epidemiological research. This could take the
form of regulations issued under the 1998 Act, setting out the
circumstances in which epidemiological research is permissible
under the Act.
18. Cancer should become a notifiable disease,
whether by secondary legislation (as for many of the communicable
diseases at present) or by statute law. Three benefits are foreseeable.
The act of making cancer a notifiable disease would emphasise
the political importance attached to it, just as with the infectious
diseases in the 1880s. If cancer were notifiable, it would presumably
be exempt from any requirement under the 1998 Act for patient
consent before the disease could be registered, as for the notifiable
infectious diseases. It would also be easier to carry out cancer
registration fieldwork, because Trusts and laboratories would
have a legal obligation to cooperate. This would in turn improve
the completeness, quality and timeliness of the public health
information on cancer available to Government.
THE FUNDING
OF CANCER
RESEARCH
19. The Commons Science and Technology Committee
recently considered the implications of the Dearing Report (of
the National Committee of Inquiry into Higher Education) for the
structure and funding of university research. It concluded (2
April 1998) that the funds available to support university research
were "wholly inadequate and that without substantial and
sustained additional public investment the government will be
putting the nation's future prosperity and quality of life at
risk". The Committee called for a substantial increase in
government funding for research, and in particular for research
infrastructure: the Government responded by allocating £600
million to a research infrastructure fund.
20. In this context, we would like to bring
to the Committee's attention the way in which funding for cancer
research in the UK relies almost entirely on voluntary public
donation, not government investment.
21. We attach data showing a huge disparity
in the government share of cancer research expenditure in the
UK, when compared to the pattern in France, Germany, Japan and
the United States (Table 1). Overall cancer research expenditure
per million population in the UK is broadly comparable with that
of France, Germany and Japan, but government's share in the UK
is less than 10 per cent, compared with more than half in France,
and over 90 per cent in Germany, Japan and the United States.
Even allowing for some error in the data, the pattern is striking:
voluntary sector funding in the UK was more than double that in
the United States, but overall expenditure was less than one-eighth
of that in the US.
22. Information on national cancer research
expenditure is not readily available: the Committee may wish to
obtain more up-to-date figures, in order to assess the UK's current
position, both in absolute terms and in relation to research expenditure
in comparable countries.
23. The data in Table 1 are now 10 years
out of date, but we have no evidence to suggest a major change
since then, either in the balance between government and non-government
sources, or in the overall funding of cancer research in the UK.
Thus the Medical Research Council reported expenditure of £24
million on cancer research in 1990-91 (Committee of Public Accounts,
10 June 1992) and around £30 million in 1998-99. By contrast,
combined expenditure in 1998-99 by the two largest cancer research
charities, the Imperial Cancer Research Fund and the Cancer Research
Campaign, was about £103 million. There are several hundred
smaller cancer charities. If there were a 10:1 or greater ratio
between government and voluntary sector expenditures on cancer
research, as in Germany, Japan and the USA, the UK Government
would need to spend more than £1 billion a year.
24. Given the relatively low level of government
support for cancer research, the cancer research agenda is largely
set by the cancer charities. They set their own priorities, at
least partly in order to produce results that are of interest
to the donating public. Unsurprisingly perhaps, their focus tends
to be on basic science (to achieve breakthroughs in the understanding
of cancer) and on clinical treatment (to achieve a cure for cancer).
25. Public health research into the causes
or outcomes of cancer may be seen by the cancer charities to lack
the cutting edge of molecular genetics or the popular appeal of
cancer treatment—yet the Government needs public health
research to inform the development of public policy. The Rt Hon
Michael Meacher MP, Minister for the Environment, speaking to
the Parliamentary and Scientific Committee, pointed out (23 November
1999) that "we need policy that is soundly based on science,
painstakingly assembled and openly published; it is the only way
out of the present morass". He was referring primarily to
the policy-making difficulties posed by genetically modified organisms
and climate change, but the argument applies equally to cancer,
where the UK represents an apparent paradox—it can boast
excellent clinical research and a national health service freely
available to all, yet the outcomes of cancer treatment are not
as good as in comparable countries.
26. The Committee may therefore wish to
form a view as to whether the UK Government can expect to receive
a satisfactory flow of timely, relevant and high-quality evidence
on cancer from public health research, as an input into national
health policy, when the Government itself invests so little public
money in cancer research and has so little influence over the
cancer research agenda.
10 March 2000
Table 1
ANNUAL PUBLIC SUPPORT FOR CANCER RESEARCH
| | Public support (US $M)
|
| | Voluntary
| Government | Total
| Govt as % of total |
| Country |
| | US $M
| per 106 pop | expenditure
|
| UK | 178 |
19 | 197
| 3.5 | 9.6
|
| France | 100
| 143 | 243
| 4.3 | 58.8
|
| Federal Rep Germany | 17
| 204 | 221
| 3.6 | 92.3
|
| USA | 88 |
1,570 | 1,658
| 6.7 | 94.7
|
| Japan | 6 |
445 | 451
| 3.7 | 98.7
|
(Source: adapted from Anderson A. Trends in international
funding for cancer research. ICCCR Update 1991; 1: 2-3)
| 
