Cancer Registration

HL Deb 07 January 2004 vol 657 cc180-211

3.15 p.m.

Baroness Finlay of Llandaff rose to call attention to the arrangements for cancer registration in England and their role in support of the National Health Service Cancer Plan; and to move for Papers.

The noble Baroness said: My Lords, I am grateful for the opportunity for this debate. I had the honour to serve on the expert advisory committee on cancers under the joint chairmanship of Sir Kenneth Calman and Dame Deirdre Hine. My interests now relate to my position as a consultant in palliative medicine at Velindre NHS Trust and Marie Curie Cancer Care. I have received secretarial help for this debate through support from Johnson & Johnson.

I hope to outline the importance of UK cancer registration and to explain why I feel that the process and the funding need to be secured through legislation. The UK has had a national, population-based cancer registration service for more than 30 years. The 12 cancer registries—nine in England, together with Scotland, Wales and Northern Ireland—record a core data set of information on nearly every new patient diagnosed with cancer. More than a quarter of a million new patients are added to the database annually, so details are now available on almost 9 million cancer patients.

The United Kingdom Association of Cancer Registries co-ordinates the 12 registries, with data for England and Wales published by the Office for National Statistics. Cancer registry information monitors trends in incidence and survival, helps to understand the causes of cancer, supports audit of NHS cancer services, evaluates the impact of screening programmes and contributes to the care process. No other country has such a large cancer registration data set, with 100 per cent national coverage. In the UK, no other disease has such a large population-based register.

Although in the USA some cancer registries receive specific federal funding, overall only 26 per cent of the population is covered. Similarly, many larger European countries, such as France, Germany, Italy and Spain, have cancer registries covering only relatively small localities, sometimes confined to centres of clinical excellence. By contrast, legislation in the Scandinavian countries has led to excellent registration systems since the 1950s. In those countries, legislation has been the reason for completion.

Registries monitor trends in cancer against time, geography and socio-economic status. Such epidemiological information is crucial in order to investigate systematically reported clusters of cancer. Recent examples include studies on the pattern of cancers around the Fylingdales airforce base in North Yorkshire, the Hinkley Point nuclear power station in Somerset, the Wishaw phone mast in the West Midlands, and the children's bone cancers that occurred in the Cornish village of Helston. To detect any significant correlation, the national data must be complete. If one or two cases are missing, that can skew the data sufficiently to miss significant effects.

Registry information is also essential to public health initiatives. Currently, a clinical trial is evaluating flexible sigmoidoscopy in screening for bowel cancer. Another example is the current action to contact women treated with mediastinal radiotherapy for Hodgkin's disease, who may now be at increased risk of breast cancer. Here, the patient is benefiting directly from her registered data, clearly demonstrating the importance of identifiable data.

The information from registries also supports counselling of the increasing number of families concerned about their genetic risk of cancer. Registry databases can help rapidly to establish the familial risk of disease so that those who could benefit from screening and early intervention are offered a choice and have appropriate counselling.

In October 1999 Professor Mike Richards was appointed National Cancer Director. In this key appointment he has achieved much as he has carried the confidence of professionals and government. The NHS Cancer Plan, published in 2000, aims to develop the fastest improvement in cancer services anywhere in Europe over the next five years. It is the first national cancer programme for England and provides a comprehensive strategy to bring together prevention, screening, diagnosis, treatment and care for cancer and the investment needed to deliver these services in terms of improved staffing, equipment, drugs, treatment and information systems.

Last year the Government invested an extra £406 million over their baseline spending in 2000. There are now more CT and M RI scanners for diagnosis and treatment, more patients are treated by multi-disciplinary teams to ensure each patient gets the best treatment by the best people, waiting times are indeed falling, good information for patients is more accessible and, crucially, the patient's experience seems to be improving. But the interim report on the cancer plan Maintaining the momentum provides a motivational half-time analysis; that although the infrastructure has improved, there still needs to be a concerted effort to get the investment to where it is needed and tackle remaining inequalities.

Delivery of the cancer plan by trusts and cancer networks is audited by peer review against detailed standards, using core information on performance from cancer registries. Such data also support the National Clinical Audit Support Programme projects on cancer. Currently, complete UK data are publicly available for cancer diagnosed in 2000. That shows 3,000 more cancer cases were diagnosed than in 1999.

The recorded cases of prostate cancer have doubled in the past 10 years through accurate diagnosis with prostate specific antigen testing. As the Prostate Cancer Charity highlights, such data give early warnings to government for service planning to cope with increased patient numbers. Data such as the big increases in malignant melanoma are also key drivers to research initiatives by Cancer Research UK.

English cancer registries originated in the former NHS regions, leading to differences between registries. Some aspects of data capture, such as non-melanoma skin cancers which are linked to sun exposure, still need great improvements.

Following Professor Gilles's report on English registries in 2001, extensive reforms are set to make the UK system the most sophisticated in the world. The cancer registration data set will collect much more detail on the staging of cancer and the treatment received by patients. A common automated system will compile a clearly defined dataset in real time, tracking key events and linking closely to the electronic integrated patient record. These developments are breaking new ground on the automated capture of clinical information about a specific patient group; cancer will become a model for other disease datasets to ensure equity in quality care provision.

Across England, the registries will use a single web-based "Cancer Information System" over the NHS net, enabling providers and commissioners down to local PCT level to obtain completely anonymised analyses on incidence, mortality, treatment and survival in their locality. The programme of modernisation in England will share developments with the cancer registries in Scotland, Wales and Northern Ireland to strengthen current collaborative working. Comparative UK information has shown the impact of smoking cessation policies in Scotland. where lung cancer cases are now at last falling.

I am concerned about funding. The cancer registries in Scotland, Wales and Northern Ireland have been funded by their respective governments and assemblies since their creation. Historically, English regions funded registries to varying extents and then local health authorities funded on a per capita basis. In 2002 Shifting the Balance of Power devolved budgets for cancer registries to PCTs without any ring-fencing or earmarking. Each registry now has contract negotiations with numerous PCTs, which have proven to be time-consuming and invidiously place the registry in direct competition with clinical services for resources. It has already become clear that most PCTs are unlikely to support further funding to continue the important programme of modernisation that I outlined earlier.

In the past two to three months regional directors of public health, supported by the Chief Medical Officer, have sought a more centralised model to resource cancer registries, similar to that used to fund the regional public health observatories. I hope the Minister will be able to confirm that this will be adopted as the preferred option for funding.

I have had discussions with more than 20 cancer charities. All support the drive for comprehensive registration data and recognise their importance to evaluate service provision overall, assess unmet need and steer research into cancer. They champion the need for the public to be educated to understand the importance of data collection. The charities themselves want to be able to obtain anonymised analyses to inform their strategy.

In collecting information on many millions of cancer patients, the registries are acutely aware of their responsibilities to maintain these data securely and to protect the confidentiality of the individual patient. Registries have adopted the high standards of data security and, in more than three decades of keeping such data sets, there has not been a single breach.

Cancer registries need to receive and process identifiable data for several reasons. To collate data from multiple sources over long periods of time, all information related to an individual patient must match, otherwise patients would be double counted and analyses would become unreliable. Registries are asked to link their information with information from other NHS services, notably to evaluate the national screening programmes for breast and cervical cancer. Personal identifiers must be checked to ensure accurate linkages.

Cancer genetic counselling clinics depend on registries to confirm cancer diagnoses in family members. The individuals concerned must first provide informed consent to the release of their information for this purpose, so registries need to be able to identify individuals.

Geographical studies, such as studies of cancer risk in people living near landfill sites, can be undertaken only if a full postcode is available. Mesothelioma and its link to asbestos exposure or clusters of childhood leukaemia around power stations are other examples of the need to identify individuals to alter the course of the nation's health in the long term.

In the future, linking registration data to routine hospital episode statistics will give information better to plan services and ensure equity of provision, such as access in different areas to thoracic surgery to resect lung cancer. Data on chemotherapy could reveal variations in drug use, particularly the adherence or non-adherence to NICE guidance. Currently, the pharmaceutical industry is the sole source of such important data.

The postcode is also required as boundaries change—for example, around primary care trusts, local authorities or cancer networks—to update and interrogate data so that service reorganisation can be evaluated and government policy held to account.

If, in the future, patients themselves could register their own verifiable details, then electronic filtering of their stories might well reveal rich information about common trends behind their cancers, for patients are keen to help others by sharing their experience for the common good, as the DIPEx website shows.

Evidence from other countries shows that full and complete registration is not possible under a system of explicit consent and that statutory cancer registration would best fulfil the public health responsibilities. No country operates an effective population-based cancer registration system in which explicit consent is required. In Germany, a requirement for explicit consent rapidly led to data less than 70 per cent complete, with bias in Hamburg and Saarland and unacceptably large gaps in data series. In Hungary the registry collapsed. In contrast, all the Nordic countries operate highly efficient and complete registration systems, which are backed by legislation, without explicit consent; and New Zealand, after exploring all other options, has enacted similar legislation.

Apart from the dangers of incomplete, biased or incorrect information, I know of no humane and caring doctor who could ask patients to consent to registration at the time of a devastating diagnosis of cancer, just as they are trying to come to terms with the information they have to take on board about their future. But of course patients should be informed that registration exists and that they have the absolute right to opt out of cancer registration and to request registries to delete identifiable data about themselves from databases.

The Patient Information Advisory Group recommended exemption from explicit consent for cancer registration. That was endorsed in Statutory Instrument 1438 in 2002. But PIAG was established as a transitory body and neither explicit consent nor full anonymisation will be feasible in the long term for a national system of cancer registration. That is why, despite the legal support brought about by the PIAG process, primary legislation to support cancer registration on a statutory basis will still be required.

The Cancer Campaigning Group, which represents 20 national cancer charities in the UK, has written to me in support of our debate. It feels that: While the UK undoubtedly has one of the most comprehensive cancer registration systems in the world, it is crucial that this is given long term protection through appropriate legislation". I hope that the Government will heed that call. I beg to move for Papers.

3.30 p.m.

Lord Turnberg

My Lords, I congratulate the noble Baroness, Lady Finlay of Llandaff, on introducing an important topic in such an enlightening way. While I am in a congratulatory mood, I commend the Department of Health on setting up the NHS Cancer Plan, which has been so successful. It has developed a formal network of services, closely linked to a research network that incorporates the MRC and cancer research charities. It is a valuable model for other services and it is achieving results.

Of course, there is much to do, as the noble Baroness has described, but I shall focus on cancer registries and their role in research. There is no doubt that research using that type of information, collected over many years, has proved invaluable. One has only to remember the discovery by Sir Richard Doll of the link between smoking and lung cancer to recognise that. There are many other examples that I can quote. The suggestion that Gulf War syndrome predisposed veterans to cancer could be examined only by going back through cancer records and examining the incidence among Gulf War veterans and non-Gulf War veterans. Incidentally, that study disproved the relationship. Studies of whether cancer of the bowel has anything to do with diet could be carried out only on large populations of patients with cancer who could be questioned about their diet. The same could be said of the relationship between cancer of the bladder and the prostate and certain infections. Indeed, the relationship between any environmental hazard and cancer—from mobile phones to living near radio aerials—can be proven only by using the kind of data that cancer registries best provide.

How best can that type of research be conducted without betraying patients' confidences or invading their privacy? We have struggled with that question. Some would say that we have struggled far too hard. A few years ago, the Royal College of Physicians—I express an interest because I was its president at the time—published some recommendations about the ethical procedures for studies that use patients' personal data. It suggested that, given certain stringent conditions, research using medical records that did not require direct patient involvement should be possible without individual consent. Those robust conditions included the involvement of a senior clinician bound by professional codes of practice on confidentiality. There was a number of other important constraints, including ethics committees. All of that was thought to be reasonable at the time. The emphasis was on a duty to use information for the common good. The European directive of 1995 on the protection of individuals' personal data also relied heavily on professional codes of practice to guard against betrayals of confidence.

However, since then, we have accumulated such a confused and confusing mass of recommendations, guidance and regulation that many forms of epidemiological research are being inhibited, even though patients—especially those with cancer—are desperate to see more research carried out, particularly when it uses data that cannot possibly harm or embarrass them when treated confidentially. Such research is perfectly respectable, highly desirable and indeed essential.

Somewhat conflicting advice has been provided by the Caldicott Guardians, ethics committees, the Data Protection Act 1998, Section 60 of the Health and Social Care Act 2001, PIAG, the GMC and even the Medical Defence Union. Is it any wonder then that there is room for confusion, and that Caldicott Guardians and ethics committees may be forgiven at times for erring on the side of presumed safety by refusing research when they fear that they may get on the wrong side of the law? And is it any wonder that busy clinicians are fearful of being brought before the GMC if, when they are baffled, as they usually are, they decide that it is not worth their bother and time to report their cases of cancer? Clinicians do not know whether they are doing right or wrong.

There has never, to my knowledge, been a case of a patient being harmed, embarrassed or discomfited by the types of research that we are discussing; that is, using data about them in the confidential way that professional regulation has long required. It must be rare for a patient to say to a doctor, "I'm concerned that you are doing research about me that I know has been for the good of future patients. Please desist". However, we seem to have developed a series of sledgehammers to crack the particular nut of patient confidentiality. If ever a case needed a fresh look, this is it.

PIAG seems to be doing a good job in making the work of cancer registries possible, but out in the field, there is a sense of uncertainty because of all the other players in the field and because of uncertainty over whether GMC advice or the Data Protection Act 1998 conflict with what is allowed by PIAG. Of course, PIAG is supposed to be a temporary affair. It was supposed to disappear when it was possible to anonymise everything and everyone was able to give consent. However, it will never be possible to carry out all epidemiological research without knowing who the patients are, so that, for example, information from two or more sources of data can be linked. Nor will it ever be possible to seek consent for future, unknown types of research when patients have died or have moved on or are untraceable. We will therefore always need some kind of system to allow such research to be carried out.

Furthermore, when the Bill that set up PIAG was passed, the Department of Health agreed that it would be accompanied by a mass-education exercise, so that patients and the public would know for what purpose data about them were being used and how important that information was, not only for their own care, but also for future patients' care through research. Unfortunately, little or none of that has happened. There has been no public education exercise. Patients are becoming increasingly suspicious when they hear about the elaborate precautions that have been set up. "Set up against what?" they may ask; "It must be something serious".

It is therefore clear that we desperately need that publicity campaign. I know that the Department of Health has been sorely denuded of officials, as we heard from the Minister earlier this week, but I know many who would gladly lend a hand, including, I am sure, Cancer Research UK, the MRC, the colleges and so on. I see little point in delaying still further until it is decided what kind of advice will be given about the uses to which patients' data will be put in general. That information about the importance of cancer registries needs to go out now.

We then need much greater clarity not only for clinicians and researchers, but also for ethics committees and Caldicott Guardians, who have to deal with the requests for research on the ground. For that to happen, we must have an agreed set of ground rules to which PIAG. the GMC in particular, and data protection commissioners can all sign up. We must have clarity and common sense when neither seems to be in abundance.

We need also to think now about what should be put in place to succeed PIAG when it comes to the end of its life. It does a good job and it has proved helpful, but we cannot have a vacuum at the end. There is much work still to be done.

This is not a trivial business. The type of research that we are discussing has important implications for healthcare. We cannot let it continue to drift.

3.39 p.m.

Baroness Greengross

My Lords, I add my congratulations to my noble friend Lady Finlay on securing this important debate, which highlights the importance of comprehensive data about cancer in helping us to improve the treatment and care of patients and to continue to make the progress that is so clearly demonstrated in the NHS Cancer Plan.

I shall intervene briefly as a non-medic, mostly to support my noble friend in her call for action and to welcome the plan, because I found it excellent and informative in many ways. However, I highlight an apparent gap in certain gynaecological cancers, where much progress is still needed and draw attention to cancer of the prostate, as my noble friend did.

Although the cancer services collaborative improvement partnership project has implemented changes to improve care in gynaecological cancers, there are, sadly, still high mortality rates even for cervical cancer, despite improvements and the excellent work that has been done. We know that 22 per cent of women with endometrial cancer, for example, which often occurs after the menopause, have been estimated to have died from it. Globally, there are 10 million registered cancer cases, 1 million of which are gynaecological cancers, where the worldwide mortality rate is almost 50 per cent. Sadly, survival rates for those cancers demonstrate the least improvements of any cancers during the past 30 years.

As my noble friend said, the standardised registration rate of prostate cancer was 70 per cent higher in 2000 than in 1990. That is an enormous cause for concern. As the medical specialists here will know, Professor Ian Jacobs is co-ordinating important research into ovarian cancer involving 200,000 women to determine whether a national screening programme should be established. We need to know whether screening for that type of cancer could lead to early diagnosis and reduced death rates, as has fortunately happened with breast and cervical cancer.

The work of Professor Jacobs demonstrates the opportunities that are now available through the use of new technology, among other things, to improve the chances of so many women who are unfortunate enough to suffer from those types of cancer. I declare an interest as having pledged my support to the work of the Eve Appeal, designed to make work in those fields as well known and, I hope, successful as has been the case with breast cancer.

The problems and uncertainties of prostate cancer are also worrying. More public awareness and a drive to overcome the reticence of many men to come forward to seek early diagnosis need to be highlighted and publicised if we are to fulfil the United Kingdom's potential to lead the world in cancer treatment and care.

3.43 p.m.

Lord Walton of Detchant

My Lords, the principle of medical confidentiality lies at the heart of the doctor/patient relationship. Indeed, in some societies, as in France under the Code Napoleon, medical confidentiality is absolute. But that is not the case in the United Kingdom. No privilege attaches in law to communication between doctors and patients, as it does between solicitors and clients. Indeed, a High Court judge can when he determines it right to do so compel a doctor to breach medical confidentiality and disclose information about an individual patient.

In the UK, the General Medical Council gives advice to members of the medical profession on the whole issue of confidentiality. Over the years, it has been well recognised by the GMC that confidential information may be disclosed for medical purposes when the patient concerned agrees by informed consent. A number of other exclusions have been accepted by the General Medical Council over the years. Thus, under the Police and Criminal Evidence Act 1984, it was made clear that in certain circumstances it was a doctor's duty to disclose to the police evidence relating to the medical condition of an individual accused of being involved in a serious crime.

Other exclusions have arisen over the years. For example, it was made clear that if a patient with epilepsy refused to give up driving a motor vehicle, despite being advised to do so by his or her doctor, if the doctor failed to persuade that individual to disclose his or her epilepsy to the licensing authority, the doctor had a duty so to report that individual patient.

From that, it may be assumed that the GMC would accept that breaching medical confidentiality may be appropriate when it is in the wider public interest, but, in the event, that is not the case. The GMC has over the years been specific in determining what information may or may not be disclosed and what exclusions there are to the principle of medical confidentiality. That is the problem at the core of the issues that are being considered in this debate. I, too, congratulate my noble friend Lady Finlay on initiating it.

Epidemiology is a science that involves the study of disease as it affects populations, not individuals. Epidemiological research in cancer and related fields has, for example, as the noble Lord, Lord Turnberg, said, identified the clear link between smoking and cancer of the lung and other organs. It has also over the years identified relationships between, for example, asbestos exposure and the incidence of a tumour called mesothelioma on the surface of the lung. There have been many other examples, such as, many years ago, the high incidence of nasopharyngeal cancer in certain individuals working in the furniture industry. Those are important developments.

Over the years, cancer registries have been extremely important in disclosing information of epidemiological importance that has been used to improve the lives of cancer patients. Indeed, such information has also been helpful in preventive medicine. Two thirds of cancers are preventable and data from registries have been especially important in identifying some of the factors that put people at risk of cancer in the first place. As my noble friend Lady Finlay said, those data are also important in uncovering trends in cancer, such as that skin cancer rates have been increasing year on year and that lymphoma and oral cancer rates are higher among ethnic minorities. Data from cancer registries are also used to track and assess variations in treatment that cancer patients receive around the country.

Cancer registries operate strict policies to protect patient confidentiality. Anonymised data may be invaluable in determining and accepting some such trends, but in many cases data can be useful only if they include information that could be used to identify an individual patient. That issue became a matter of great public and professional concern after the passage of the Data Protection Act 1998 and after the GMC issued its guidance in September 2000. That guidance, issued to all doctors, required that no identifiable information be transferred to cancer registries without the patient's explicit consent.

Epidemiologists expressed grave concern about that, because they felt that obtaining explicit patient consent in every case would be difficult—not least for the reasons referred to by my noble friend Lady Finlay in the case of individuals most recently diagnosed with cancer. Uncertainty about the legality of using patient-identifiable information without consent led at that time to a fall in data flow to cancer registries, which in turn had a negative impact on associated research.

Section 60 of the Health and Social Care Act of May 2001 was put in place as a short-term solution. The section empowered the Secretary of State for Health to enable the collection and processing of identifiable health data, including cancer registration, without patient consent. The responsibility for overseeing those regulations falls to the Patient Information Advisory Group, a body required to review its guidance annually. It is clear that a longer-term solution is necessary both for the proper functioning of cancer registries and associated research.

There is a particularly strong case for legally requiring the registration of every case of cancer, making it a statutorily reportable disease. Cancer registration is required by law in all or part of the USA, Canada, Australia, New Zealand, Israel, Finland, Denmark, Norway, Sweden and many other countries. In the Netherlands the president of the official privacy court acknowledged that written informed consent would make cancer registration impossible. In this country, the House of Commons Science and Technology Committee recommended in July 2000 that governments should introduce legislation to make the registration of cancer a legal requirement, to ensure both the completeness of cancer registry data and access to those data for legitimate research purposes. To date, Her Majesty's Government have been reluctant to follow the lead of many other countries in recommending that reporting of cancer cases becomes mandatory.

At present, in the absence of such legislation, doctors and healthcare professionals must be adequately informed of the current regulations by which data can be relayed to the registries without first having to obtain patient consent. Under Section 60, to use patient-identifiable data from cancer registries or other healthcare databases, researchers must apply for special approval from the Patient Information Advisory Group or be carrying out an activity governed by one of the class regulations of Section 60. That requirement is in addition to receiving ethics committee approval, and it imposes an additional administrative burden on researchers in gaining access to data.

The House of Commons Advisory Committee strongly recommended that cancer be made a notifiable disease and that it be compulsory to register every case, as happens at present with other notifiable diseases. Many years ago the legal requirement to notify an appropriate body about certain diseases was introduced, but largely that involved infectious diseases as a means of preventing the spread of epidemics. Since then every proposal that other diseases should be notifiable under law has been met with the response that cancer is not an infectious disease and is not therefore a danger to other members of the community.

However, in the light of the evidence put forward today by the noble Baroness and others, which will no doubt be amplified by other noble Lords, I strongly believe that compulsory registration of cancer cases will be, in the long term, the only satisfactory approach if research into the epidemiological causes of cancer and ways of preventing and treating it under the NHS Cancer Plan are to be feasible.

3.54 p.m.

Baroness Hayman

My Lords, I shall intervene only briefly, not least because of the quality of the previous contributions in making clear the past and potential value of cancer registries and registration, and the difficulties of researchers and public health doctors. I record my gratitude to the noble Baroness, Lady Finlay of Llandaff, for introducing the debate and giving us the opportunity to probe the Government on the reluctance to put cancer registration on a statutory basis, which the noble Lord, Lord Walton of Detchant, referred to at the end of his contribution. I have a non-financial interest as chairman of Cancer Research UK, many of whose activities are hugely supported by the public. It puts its money where its mouth is regarding the value of research, particularly research into cancer prevention, which depends mainly on epidemiological research, and on the importance of having good information.

Over the past two years, I have been privileged to visit cancer hospitals and doctors in four African countries. It was fascinating to see how frustrated they were at the lack of a firm information base on which to build policies for cancer prevention, treatment and control. Those countries are trying to set up that precious asset, which we have, even in the most rudimentary form. We should be very wary of anything that endangers the quality of information. For that reason, I would support a new regime that removed uncertainties. The noble Lords, Lord Turnberg and Lord Walton of Detchant, made clear how many layers of advice that is not absolutely congruent have been laid on top of each other, and the effect of that on individual over-pressed clinicians.

We need clarity, which could be achieved by making cancer a notifiable disease. I was fascinated by the observation by the noble Lord, Lord Walton of Detchant. that the reason that we drew the distinction was the argument that cancer was not an infectious disease and therefore no danger to the population. Cancer may not be an infectious danger, but notification has an overwhelming public health benefit for the whole population. Examples such as childhood leukaemia, and smoking and health are manifold.

Cancer statistics for 2000 were released today. It is fascinating information that will point us in particular directions, looking at services, the effectiveness of the cancer plan, the future for research and the areas in which we could make progress on prevention. Professor David Forman, the chairman of the UK Association of Cancer Registries, said today: Keeping track of cancer trends is vital for research on the causes of cancer and to help focus prevention strategies and treatment resources". When my 21 year-old son caught whooping cough last year, it was deemed important enough in the public interest not to ask him whether he was willing to give his details and to have them recorded publicly so that other university students with bizarre symptoms might be diagnosed. It is absurd to say that registration of that case was somehow more important than the potential benefits of cancer registration, which are firmly based. It is an important tool for public health, research and cancer policy, and we should put it on a firm legal basis that gives stability and clarity for all involved. That will need some additional work from the Information Commissioner regarding the Data Protection Act after that. Perhaps the time has come to reassess some of the consequences of the rush towards data protection in a number of fields.

The noble Baroness, Lady O'Neill of Bengarve, is here today. She has spoken on many occasions, with great depth and analysis, on our reaction to problems and on a lack of trust, which create more and more complicated bureaucracy and regulatory systems that only hamper those who are sufficiently law-abiding to take part in them and make sure that they are absolutely scrupulous in every area, but do nothing for those who are badly motivated and wish to do wrong. Inadvertently, they cause much greater harm than the harm that they set out to prevent. In areas of data protection, in a number of fields—and we have seen a number of cases over the last few weeks—we must go back and reassess, in the round, the consequences of some of the things that we have done.

That is particularly true relating to consent. I first joined a research ethics committee in the early 1980s, and I was a member for nearly 10 years. At that time, attitudes towards patient information and patient consent left a great deal to be desired; they were rudimentary in many ways. We have seen vast improvements since that time, but I suspect that we have gone past the point where we are saving those involved from harm, and where we are often in fact causing them more problems and more difficulties. We are refusing to take responsibility, which as a society we should, for the public interest on issues like information on cancer registries. It is not possible to make all data anonymous if we are to do the sort of research that will save lives and underpin good policy for the future. Examples have been given of that already.

I spoke recently to a researcher, who told me about the difficulties that he had when trying to examine the thesis that there was a genetically based familial link in a particular site-specific cancer. Obviously, he wanted to look at names on cancer registries to try to make these connections. He had great difficulty, because there are different registries and different policies at different registries. I echo the noble Baroness in saying that this is a national resource that should be nationally resourced and have national standards. Because of these difficulties, he ended up having to go to individual clinicians at hospitals asking for a patient base and approaching the individual patients to track in to their family histories. In so doing, he discovered that the records of recorded deaths in the hospital were nothing like as up to date as the cancer registry. Therefore, he ended up contacting the widows of several men who had recently died of the disease where the hospital had no record of that information, and that caused great pain and distress to those people involved. Those are the sorts of things that happen when we look too much at process and too little at effect. Of course, we must have proper safeguards, but, as has been said, we have not, in nearly 40 years of cancer registration, seen any breaches of those safeguards.

It is within the wit of man to devise a system that provides comprehensive information that will be of long-lasting value to the health and well-being of the population of this country without breaching fundamental rights of privacy or taking away appropriate consent. It is time to step back and make sure that we are not throwing out several babies with the bathwater.

4.5 p.m.

Lord Chan

My Lords, I also congratulate my noble friend Lady Finlay of Llandaff on securing a debate on the arrangements for cancer registration and their role in supporting the NHS Cancer Plan launched in September 2000. The need for comprehensive cancer registration that will improve treatment and outcome has been demonstrated admirably by the cancer in children register that has been co-ordinated in Oxford for more than 50 years. Today, childhood leukaemia is curable in most children.

The NHS Cancer Plan set out four key aims: to save lives; to improve patients' experience of care; to reduce inequalities; and to build for the future. Without cancer registration, it would be exceedingly difficult, if not impossible, to measure progress towards the key aims over the past three years among the 200,000 people in England diagnosed with cancer and the 120,000 people who die every year from the disease. No plan to save lives and reduce health inequalities can succeed without knowledge of the types of cancer occurring in the local population and the fatality rates among men and women in different localities.

I shall therefore consider the importance of cancer registries in primary care. The information that I shall use comes from the Merseyside and Cheshire Cancer Registry, led by Dr Evelyn Williams, with whom I have worked since 1997. I am delighted to acknowledge her help. In the five years from 1996 to 2001,75, 600 cancers were registered in Merseyside and west Cheshire, an area with a population of 2 million. Of the 34,500 cancer deaths, 51 per cent—17,600—occurred in males. Of those, one third died from lung cancer. Lung cancer was also the main cause of death among women in the region, accounting for one in four deaths, compared with one in six due to breast cancer. Those figures reflect the high rate of cigarette smoking among residents of Merseyside and west Cheshire. Better screening and early detection of breast cancer in women have contributed to improved rates of survival.

Cancer statistics on incidence and mortality in English regions can be compared with figures from other parts of the UK and Europe, as was demonstrated by my noble friend Lady Finlay of Llandaff. The publication of such useful information assists doctors, nurses and support staff to improve access to care and the quality of the care provided by cancer services. In order to save lives, improve patients' experience and reduce inequalities in cancer care, details of patients with cancer must be collected, analysed and compared across geographical areas.

Primary care trusts require information on cancer incidence and mortality rates, in order to commission appropriate services and implement public health measures, as was said by other noble Lords, to reduce the number of new patients. The Merseyside and Cheshire Cancer Registry provides cancer information to all its 15 primary care trusts. The public health lead for cancer in every primary care trust uses the information to plan and to implement measures to reduce smoking among the population and to improve screening of breast and cervical cancer in women. In return, every primary care trust pays the cancer registry for that service. But that source of funding of cancer registries, although assured, is unlikely to increase proportionately with the needs of regional registries.

Cancer networks comprising specialist staff have been established in all regions to monitor the implementation of the national cancer action plan. The networks use data collected and analysed by cancer registries. Relevant information on cancer is also gathered by public health observatories and hospitals. Cancer registries are beginning to co-ordinate the analysis of all those sources of information on cancer and to make them available to primary care trusts, to hospitals, to strategic health authorities and to regional public health directorates.

To improve access to analysed data, a new computerised system of cancer registration across the north-west, called PRAXIS, funded by the national action plan, will be introduced this year. The system is being used in the Thames, the Trent and the Northern Ireland cancer registries and will soon be in use in the northern and Yorkshire registries. It will facilitate regional comparisons and will improve the monitoring of the national cancer action plan.

With the routine gathering of ethnic group data from NHS patients, cancer registries are able to analyse cancer prevalence among people from different ethnic backgrounds. For example, we have evidence, as quoted by my noble friend Lord Walton, that lymphoma and oral cancer rates are higher in ethnic minorities in England. In the 1980s, before hepatitis B vaccination became available for new-born babies, primary liver cancer in Chinese people from Hong Kong was common.

If cancer registration is fragmented, information on cancer in England will not be reliable and the national cancer action plan will not be monitored effectively. Vulnerable groups of people may not be identified and the key aims of the cancer plan will not be achieved. Regional cancer registries in England are therefore essential if the national cancer plan, with its long-term goals, is to be achieved. Therefore, if statutory legislation is the means for protecting the work of cancer registries, I would wholeheartedly support the proposals made by noble Lords and, in particular, the proposal made by my noble friend Lady Finlay.

4.12 p.m.

Baroness Masham of Ilton

My Lords, I congratulate my noble friend Lady Finlay of Llandaff on her very clear explanation and introduction of the need for up-to-date clear data for a cancer register in support of the National Health Service Cancer Plan. I can think of no better person than my noble friend, who is a professor of palliative care and works with real, living patients, to lead this important debate in your Lordships' House.

I hope that this debate will help make many people aware of the need for registration, which helps to show up the needs across the country of what treatment works best for cancer care. I am sure that your Lordships will agree that there should never be a postcode lottery for the treatment of cancer patients. A cancer register helps with research and better treatment when what works shows up in the data collected.

I live in North Yorkshire. In December, a friend of ours died of cancer, having continued with her life so well until the last few weeks. A few days before she died, I spoke to her partner who said that she was being looked after in a small hospital near her home. He told me that he could not have managed without that help. I take this opportunity to give a plug for small hospitals near patients' homes, which can give much needed help when everything else that could be done has been done.

Just before Christmas, a former Member of your Lordships' House, the Marquis of Downshire, died after a valiant fight over cancer. His memorial service is to be at Ripon Cathedral on 29 January. Last Friday, the wife of someone I know very well was told that she has cancer. She started treatment on Monday of this week. Her husband is devastated.

Another person who I know, who was about to go to work in Africa as a missionary with his wife, was delayed for a year when his wife was found to have breast cancer. The husband told me that having had the first part of her treatment in the north, near where I live, they moved to Birmingham. The dose of chemotherapy was changed. Different doses are used. If the data are collected and the patients monitored, the research will be useful for others when it is found which results are the most effective. I think that I live in a cancer cluster; there are many people who suffer from cancer in Masham.

I give these examples— I am sure that all your Lordships will have similar ones—to illustrate how important it is to find the best treatment and cure for these various cancers. With co-ordinated research and accurate data, it must be hoped for better results.

I attend various parliamentary groups. Lately, there have been some excellent presentations on different types of cancer. These groups are attended by Members from both Houses. Some years ago, an excellent presentation on a cancer overview was given by Professor Mike Richards. I was not at all surprised when he was made the cancer tsar and national cancer director of the NHS Cancer Plan. I congratulate the Government on his appointment. I am sure that his enthusiastic personality inspires others across the country and the world to do more for the fight against cancer.

On 2 December 2003, I attended a working dinner on prostate cancer with other Members of Parliament. Prostate cancer is now the most commonly diagnosed cancer in men in the UK due, in large part, to the increasing popularity of the PSA test. The epidemiological profile of the disease is changing rapidly, and it requires close monitoring. The increase in incidence in prostate cancer may represent an epidemic of diagnosis rather than a "genuine" epidemic of disease. But to the man with the disease, that is an academic argument. At diagnosis, there has to be enough capacity in the system to meet their needs.

Cancer registration data form the national picture to do this. Linking these changes in trends with data on outcomes, health services uptake and resources is most important. If cases are not registered efficiently, timely assessment of current and future demands for prostate cancer services is not achieved. Demand for health services for treatment of men with early prostate cancer, in particular, could quickly outstrip supply.

There is a delay in cancer registration and the annual figures being released. There will always be a need to modify entries, but is it possible to speed up the collation of cancer registry data? If the delay is due to inadequate funding, rather than any other logistic considerations, that must be addressed, otherwise assessment of future need will always mismatch demand as it is made on out-of-date data. Further, in the case of rapidly increasing diagnoses of prostate cancer there could be a considerable and rapidly increasing divergence between what is available and what is needed.

It is important that the public understand the value of epidemiological and cancer registries. There needs to be openness and a good PR strategy so that everyone involved knows that they are helping in this important research.

The Million Women Study, a confidential study on women's health concerned with hormone replacement therapy, recently came out. There is a balance to be found between the benefits and the risks involved. Women need to have understanding doctors who will help them reach their decisions. As the results of research present, there is more to he understood and people to be helped. Surely cancer prevention must be a top priority. I am sure that all your Lordships will listen with interest to the Minister's reply.

4.21 p.m.

Lord Rea

My Lords, as usual, my professional friend the noble Baroness, Lady Finlay, has chosen an important and topical problem for our consideration, one which is particularly relevant to her role as a palliative care physician. It also coincides with my own continuing interest in preventive medicine and epidemiology. My noble friend and other noble Lords who have spoken in the debate have described the important role played by the cancer registries in providing a complete and accurate database for the numerous studies that have thrown light on the incidence and prevalence of different cancers in the population, on possible causes of different cancers and on the effectiveness of different methods of treatment, all of which are essential to achieving the aims of the NHS Cancer Plan.

Many examples of how data from the cancer registries have advanced knowledge and thus helped patients have been cited throughout the debate. I shall not repeat them, although I was going to do so. I should like to say, however, that data derived from the registries are becoming increasingly important as more patients are treated successfully. That is because studies based on mortality rates, which would be our main source of data without the registries, become less and less representative of the complete picture of cancer incidence and are a crude measure of the effectiveness of treatment.

Perhaps we can take it as read that cancer registries are desirable and provide a vital database for the epidemiological and other research on which preventive medicine and effective treatment are based. However, as the noble Baroness pointed out, the work of the cancer registries, which relies on a complete list of their data to be effective, has been under something of a cloud since the pronouncement made in 2000 by the General Medical Council in response to the Data Protection Act 1998 and the Human Rights Act 1998 that, in principle, the consent of NHS patients should always be obtained before any details can be used for research purposes. Following the general approach of the GMC regarding patient confidentiality, proposals were put forward in the 2001 Health and Social Care Bill.

However, at Third Reading in May 2001, a government amendment tabled only after very prolonged debate led to what eventually became Section 60. The amendment modified the original stance and set up the Patient Information Advisory Group—PIAG—which has already been described by several noble Lords. The group's remit involves a monitoring and advisory role on the use of NHS patient data for research purposes, even without patient consent in certain circumstances if that is necessary for the needs of the NHS and public health purposes. However, Section 60 and the creation of PIAG were compromise, transitional solutions based on an amendment originally proposed at Report stage by the noble Baroness, Lady Northover. So the government amendment setting up PIAG put forward by the noble Lord, Lord Hunt, at Third Reading was, in effect, a takeover from Northover.

Perhaps we should ask how the cancer registries have fared under PIAG. The group meets every three months and considers applications from researchers for access to patient data where the patient's permission is difficult or impossible to obtain. PIAG also undertakes a number of other functions which are well described in its first annual report published last October. The cancer registries, along with several other organisations, including the Public Health Laboratory Service—now the Health Protection Agency—have been given "specific support arrangements" which give them permission on an annual basis to continue collecting information without specific patient consent.

This permission, which it is hoped will be reviewed and renewed each year, is dependent on certain conditions being fulfilled regarding, for example, consideration wherever possible of the anonymisation and pseudoanonymisation of data—employing two unpleasant neologisms that would rate high in any unpronounceability index. Thus a major part of PIAG's work is concerned with ensuring that the privacy of patients is still safeguarded even where the nature of the research concerned requires individual patients to be identified. During its first year, PIAG received 65 applications for support, of which 42—some two-thirds—were accepted.

As has already been explained, a patient's identity is necessary for research purposes where the effects of personal characteristics such as occupational history, place of residence, housing, diet or smoking habits on the incidence of cancer are being assessed, as well as when different treatment regimes are being compared. I gather that each research project arising from a cancer registry needs to be further individually assessed by PIAG. I am not sure why this is necessary when, for many years, every research proposal has had to be approved by a regional or local ethical committee. Perhaps my noble friend on the Front Bench will be able to help me on this point. It seems an unnecessary duplication of effort. However, I am informed that, under its current chair and members, PIAG has been extremely helpful and encouraging and so far has facilitated the work of the cancer registries.

But the price of this benign approach has been the submission of much paperwork justifying each and every aspect of data collection. That, too, seems an unfair bureaucratic burden given that, to my knowledge, the cancer registries have never been accused of breaches of confidentiality. However, according to the briefing produced by Cancer Research UK, some clinicians have withheld patient information from the cancer registries because they were uncertain about the legality of providing it, thus weakening the entire data-set. I would be grateful if my noble friend could tell us whether the Government have any information on this.

Initially the legislation and regulations setting up PIAG were regarded as interim measures. Can my noble friend say whether the Department of Health still regards PIAG as a temporary, transitional body? If it is eventually to be wound down, what criteria will inform the Government's decision to allow that? The organisation was set up largely to reassure public opinion that patient confidentiality would be respected in spite of some sensitive information being divulged. What is the evidence of incidents of past breaches of confidentiality on the part of, for example, the cancer registries, the Public Health Laboratory Service or the Health and Safety Executive, that made it necessary to create this benign but essentially bureaucratic organisation in the first place?

As the noble Baroness, Lady Hayman, and other noble Lords have said, Cancer Research UK is in favour of new diagnoses of cancer being notifiable. The importance of collecting this information is so great, it is implied, that considerations of confidentiality, while not being neglected, should take second place. If notification is made mandatory it is felt that few could then object. There would of course be a right for individuals to opt out, but under a mandatory framework these would perhaps be very few.

I am not sure that this is the right approach. Notification of diseases as at present practised is incomplete and imperfect. It also adds another layer of bureaucracy. The notifier receives a payment, at present so small as to be merely token. How this will be arranged—if it is ever arranged—when many different sources provide information to cancer registries, I do not know.

HIV/AIDS is an extremely serious disease. It is not statutorily notifiable but sexually transmitted disease practitioners are confident that the current statistics are quite accurate while collected through a system of voluntary confidential notification.

In conclusion, I ask my noble friend how successfully he feels that PIAG is working itself out of a job. If it reports that researchers using NHS patient information, with or without consent, are consistently doing so with discretion—as I am convinced they have been for many years—cannot the members of PIAG be congratulated on the careful work they have done in providing advice to the research community and then be allowed gracefully to step down?

4.32 p.m.

Lord Clement-Jones

My Lords, it has been an interesting and useful debate. I congratulate the noble Baroness, Lady Finlay, on initiating it and on setting the scene so well in her introduction.

All the relevant points have been made during the course of the debate. The common ground throughout has been the importance of cancer registries and cancer research. It is important that we deal not only with the issue of cancer registries but also with the wider issue referred to by a number of noble Lords.

Many noble Lords referred to the crucial nature of registry data in defining causal relationships between products, substances and cancer; environmental and geographical links in uncovering trends; in assessing variations in treatment; and, indeed, in the broad sense, in building prevention strategies. So there is absolutely no argument about the importance of cancer registries.

A number of noble Lords referred to the history of the cancer registration system and to the fact that it was more or less voluntary up until 1993 before the establishment of a cancer registration minimum data set. There then followed the Gillis review.

I do not believe that anyone has accused the Government of being unsupportive towards cancer registries—the nature of the debate is much more important than that. It relates to what is almost a cultural issue about the treatment of personal information and an organisational issue about the funding of cancer registries. Those are the crucial points that have emerged during the course of the debate.

As to the establishment of the National Cancer Registration Advisory Group, I share the admiration of the noble Baroness, Lady Masham, for Professor Richards, the cancer tsar and chairman of the group. The Government's actions in this regard are welcome. Indeed, the national Cancer Plan itself is of course welcome.

As a number of noble Lords have said, the first fly in the ointment was the GMC's guidance issued in September 2000. As we discovered after some considerable confusion and debate, effectively that guidance was not so much built on the Data Protection Act—I take the point made by the noble Baroness, Lady Hayman, of the need to review that Act—but on the common law duty of confidentiality. The guidance gave rise to considerable confusion surrounding cancer registration and the protection of personal information.

At that time, the GMC guidance issued to doctors appeared to require that no identifiable information could be transferred to cancer registries without the patient's explicit consent. It is no wonder that the cancer registries became extremely concerned. Uncertainty about the legality of using patient-identifiable information without consent led, as the noble Lord, Lord Walton, said, to a direct fall in data flow to the cancer registries.

As a result—it was fortuitous that the Health and Social Care Bill was in the making at that time — Section 60 came into being. I was delighted when the noble Lord, Lord Rea, paid tribute to my noble friend Lady Northover because the establishment of PIAG was the crucial element which enabled that particular clause to pass through the House. It was the debate and discussion started by an amendment from these Benches that enabled that to happen.

The section empowered the Secretary of State to enable the collection and processing of identifiable health data. That was absolutely crucial for the cancer registries and for the establishment of PIAG, which is required to review the guidance on an annual basis. Thereafter the Health Service (Control of Patient Information) Regulations 2002 were debated in the House.

In consequence, the GMC is publishing new guidance in February which builds on the Section 60 regulations as regards the national and regional disease registries. But, again, the regulations do not adequately cover local research and review of data. They may cover adequately the national disease registries on a temporary basis—I shall come to that later—but, as the noble Baroness, Lady Hayman, and the noble Lord, Lord Turnberg, pointed out, they do not cover local research.

So, despite the GMC guidance, there will still be a good deal of uncertainty, which may well be perpetuated. It is not the GMC's fault that the guidance is as it is; it builds basically on the provisions as they stand.

It is even more complicated because when Section 60 was passed Ministers explicitly stated—a number of noble Lords have mentioned this—that it was regarded only as a temporary interim solution. Indeed, the GMC explicitly referred to it as a temporary solution. So today's debate about what should form the basis of a longer-term solution is very timely.

A number of noble Lords referred to the impracticability—"impossibility" is perhaps the word that one might use—of being required to obtain the specific consent of all patients to their data being transferred. Certainly none of us is as unrealistic as to suggest that that is a long-term possibility or practicability.

The second option, the anonymisation—or, as the noble Lord, Lord Rea, referred to it, the "pseudoanonymisation"—using NHS numbers is put forward as another possibility. Certainly at the time we debated the Section 60 provisions and the regulations it was proposed as a possible way forward. From talking to those who know about these matters—indeed, we have heard from noble Lords who do know about them—it is clear that very few people believe it is a realistic possibility for all purposes in the future.

Of course registries are currently making efforts to reduce the processing and availability of names and addresses and so on, and of course postcodes are used to a huge extent, but it seems to most of those in the field that personal identifiers will always be needed for verification purposes. There is the need to link records from different sources, which requires cancer registries to hold patient information in a form that identifies individuals. People may have put their faith, when discussing these matters, in electronic systems, but even those are not currently available, and, even if they were, it is unlikely that they would achieve the purpose that is being sought.

Many noble Lords have referred to the third major solution, recognising the problems of obtaining consent, problems with anonymisation and, crucially, the overwhelming public interest in a complete, high quality and timely cancer register which includes patient identifiers. In those circumstances, the arguments in favour of a solution which requires cancers to be notifiable seems overwhelming. I was a little surprised at what the noble Lord, Lord Rea, had to say. It seems to me that with the experience of notification of infectious diseases, that was a perfectly decent basis on which to build. Having it notifiable would mean that we would avoid these confidential data protection issues, since those constraints would not apply where there is a statutory requirement to collect the data. It would provide the right degree of permanence, settling the debate of whether cancer registration data should be collected. It seems to me that that is a very straightforward way forward.

If we do not have a permanent solution in place, we will have major problems. There is already a case against the Thames Cancer Registry, the outcome of which would be uncertain. That seems to be a distraction that the cancer registries need not at all.

The Alberman report, back in 1990, suggested that the Department of Health consider urgently whether legislative or contractual means should be utilised to ensure its cancer registration data. That has been a live issue for quite some time, and it is time that the department took a view on it. We have heard about other jurisdictions such as the USA, Canada, Australia, New Zealand, Israel and all the Nordic countries. We have heard about the recommendations of the Commons Select Committee on Science and Technology in July 2000.

I am at one with the noble Lord, Lord Turnberg, and the noble Lord, Lord Rea, on local research and review of data. We are building a massive bureaucracy—indeed, the noble Lord, Lord Turnberg, added further layers of bureaucracy which I was unaware of in terms of Caldicott, and so on. I very much support the Cancer Research UK in asking PIAG to endorse a statement allowing, even in the absence of consent, the use of data from noncommercial medical research which has no effect on the individuals being studied and which has been approved by an accredited research ethics committee. We need a solution like that, and it is high time we came up with one, otherwise we will simply not have the research we need.

The noble Baroness, Lady Finlay, raised the extremely important issue of funding. The noble Earl, Lord Howe, made some very pertinent points in Monday's debate about public health and the fact that we need a more broadly based organisation and system of funding for public health. The same arguments apply to cancer registries, where we are talking about the surveillance and monitoring of disease. If the department is, as the indications seem to suggest, adopting a more centralised model for resourcing the cancer registries, this must be welcome. I very much hope that the Minister will indicate whether that is the case.

The noble Baroness, Lady Hayman, struck a great chord with me. If we are not careful, we will see the result of the law of unintended consequences in the area of cancer registries or cancer research if we restrict the imparting of personal information. That may be a virtuous idea, but it could give rise to problems.

Our system needs clarification and legal recognition to ensure that we can continue to collate the data that underpin ongoing research. If we are to make sure that the national Cancer Plan is implemented, that is what we need to do.

4.44 p.m.

Lord Skelmersdale

My Lords, it is my habit, in starting my remarks in debates such as this, to use the words, "The House will be grateful to the noble Lord, Lord X, for calling our attention to" whatever the subject of the debate may be. This is not a flip comment. After all, the major part of the value of this House is to research and comment on the problems and successes of the day and, by doing so, offer advice to government, from people with practical experience in a whole range of fields. I hope your Lordships will not object to being called "people"—the reason will become clear in a minute. And who better to introduce a debate on cancer registration and its role in support of the Government's NHS cancer plan than the noble Baroness, Lady Finlay, an expert in palliative medicine?

On this occasion, however. it is not only the House that should be grateful. It was, I recall, a Member of another place—the Prime Minister, no less—who, in answer to an interruption by one of my honourable friends in a debate on the Queen's Speech, responded, I thought rather sharply: I suggest that the hon. Gentleman and other Opposition Members talk to people in cancer services, who will tell them that they are improving as a result of the extra investment". —[Official Report, Commons, 26/11/03; col.25.] Well, my Lords, what is sauce for the goose is sauce for the gander. Will the noble Lord, Lord Warner, refer the Hansard report of this debate to his right honourable friend? Will he be brave enough to tell him what the all-important cancer registers reveal? He probably will want to tell him that cancer survival in children has improved dramatically over the past 30 years. It will come in handy, perhaps, for a bit of selective spin. But what about skin melanoma rates increasing year on year? What about lymphoma and oral cancer rates being higher in ethnic minorities? What about cancer survival for patients living in poor areas being lower than for those living in richer areas? What about survival rates from all cancers being the lowest in Europe outside Poland and Slovenia? Last but not least, there is a wide variation in how cancer is treated around the country—the postcode lottery referred to by the noble Baroness, Lady Masham.

Much of this debate has centred on compulsory cancer registration to make cancer a statutorily reportable disease, where every case must be recorded. This would indeed remove the ambiguity about the legal status of cancer registration. It would also provide legal stability to the national cancer registration system and would reflect its national importance as a tool for public health cancer research and, of course, the NHS cancer policy. Legislation would be required.

Like other noble Lords, I ask the Minister what is the Government's current thinking on this proposal? As has been pointed out, in the absence of such legislation, it is essential that doctors and healthcare professionals are adequately informed about the current regulations by which data can be relayed to the registries without first having to obtain patient consent. It is important that people reporting data to registries are confident that in doing so they are acting entirely within the law and, of course, within the circumscription of medical ethics.

As the noble Lord, Lord Turnberg, said, it is almost impossible for clinicians to cut through the myriad guidelines. But if there is one message to come out of this debate, it is that the Gordian knot must be cut. I agree with the noble Lord, Lord Clement-Jones, that it is time to bite the bullet.

To be fair, what the registers currently show is indeed known to the department, which is presumably why it produced the NHS Cancer Plan in September 2000. Surprisingly, we have not heard as much about the Cancer Plan as we have about the cancer registries. In launching the plan, the then Secretary of State said: The plan will develop cancer services in this country that compare with the best in Europe. By 2010, our five-year survival rates for cancer will compare with the best in Europe". I got that from the Guardian of 9 November 2000.

The plan says that now, for the first time, there is a comprehensive strategy bringing together: research; prevention; screening; diagnosis: treatment; and care for cancer as well as the investment needed to deliver real improvements in all of these". Those are worthy aims, but three years into the 10-year plan, what are the results?

An interim report, called Securing Good Health for the Whole Population, published by Derek Wanless last month, said that England, performs less well than comparator countries, particularly on those outcome measures most affected by healthcare expenditure. For example, it performs badly on the few specific measures of quality medical intervention that are available, such as survival rates for cancers". In my 10 years as chairman of the Stroke Association—which are now finished, so I feel able to talk about it—if I learned nothing else it was that, however good the intervention may be, speed was of the essence. So it is with cancer. However, a careful look at the latest statistics from the Department of Health on hospital episodes reveals that there has been no improvement in waiting times for cancer treatment, with delays actually getting worse. Waiting times for prostate and skin cancer are the longest, while the treatment of brain cancer has witnessed the largest growth in delays since 2000. I, for one, would like to see the correlation between waiting times and survival rates, and I challenge the department to publish them.

One reason for the delays is, no doubt, radiography. The plan promised another 500 radiographers by 2005. How far have we got in achieving that? It also calls for 4.2 linear accelerators for every million of the population. Considering all the hype, that is a surprisingly modest target, as France already has 6.1 machines per million and the Netherlands 7.1. Where do we stand today? On top of that, we have the problem of ageing and out of date machines. In 1997, according to the BBC, 25 per cent of linear accelerators were 10 years old. That proportion had increased to 38 per cent by 2002. Was the BBC correct in its analysis? The plan says that over the next three years there will be more scanners and other equipment to treat cancers. What is the figure today?

To sum up, 10-year plans have one great weakness: they raise hope over expectancy. Furthermore, the Cancer Plan could never have been envisaged without the cancer registers. Without them, we shall not know whether the plan is achievable. Most importantly, without them we would not be able to judge its success or failure. I am, and the Prime Minister should be, grateful to the noble Baroness, Lady Finlay, for raising this subject today.

4.53 p.m.

The Parliamentary Under-Secretary of State, Department of Health (Lord Warner)

My Lords, as noble Lords have said, we are all grateful to the noble Baroness, Lady Finlay, for raising this important issue and giving us a chance to debate it. I am grateful, too, for her fair-minded description of the improvements made in cancer services under this Government.

I was mildly surprised to hear the noble Lord, Lord Skelmersdale, trotting back in history, given the situation that we inherited. I can give him some reassurance. For example, he raised the subject of radiotherapy waits and radiographers. We know that there are difficulties in that area, and the Royal College of Radiologists is considering ways in which to increase the workforce, along with the Society of Radiographers. However, it is worth putting on record that we have increased the number of therapy radiographers by 10 per cent since 1997. To ensure future growth, we have more than doubled the number of training places at university—so we have taken some practical action in those areas, which contrasts occasionally with the situation before 1997.

I shall outline briefly the context in which cancer registries work, before turning to many of the points raised, and responding to many of them. It is easy to overlook the scale of the challenge that the NHS has to face on cancer. In England alone, around 225,000 people are diagnosed with the disease every year. Cancer covers around 200 different diseases, requiring different treatments delivered by different groups of skilled staff, in almost every specialty.

Years of underfunding meant that, at the end of the 1990s, the NHS had too few staff and inadequate facilities. Cancer services in England lagged behind those in the rest of Europe. The 2000 NHS Cancer Plan, to which a number of noble Lords referred, provides for the first time a national strategy to prevent, diagnose and treat cancer; to reform the way cancer services are delivered; to standardise care and improve patient experience; to co-ordinate research; and to invest in equipment and the cancer workforce. It is a long-term strategy but, as the three-year progress report published by my right honourable friend the Secretary of State for Health in October last year shows, implementation of that plan is already delivering real improvements that affect the lives of many of our fellow citizens.

Thanks to a clear set of priorities, extra investment and the superb efforts of staff, including doctors, nurses, managers—yes, managers as well—allied health professionals, scientific staff, pharmacists, social workers, and a wide range of other administrative and support staff throughout the country, patients are benefiting from the good progress that is being made, as the noble Baroness, Lady Finlay, and others acknowledged.

The noble Lord, Lord Skelmersdale, wants some indicators of progress. The death rate from cancer is falling. Britain has the world's sharpest decrease in premature deaths from breast cancer and a substantial decrease in lung cancer deaths, especially in men. We are committed to reducing the mortality rate from cancer by at least 20 per cent in people under 75 by 2010, against a 1995–97 baseline. The most recent figures, for 2000–02, show that the death rate has fallen by 10.3 per cent, so we are well on track.

The noble Baroness, Lady Greengross, mentioned screening. The NHS Cancer Plan made a commitment to extend screening and to introduce new programmes when it is clear that that will save lives. The noble Lords, Lord Chan and Lord Walton, drew attention to the evidence that there are higher rates of lymphoma and oral cancers in ethnic minorities. We are committed to combating those inequalities. We share the wish of the noble Lord, Lord Chan, to strengthen regional comparisons in that area. Information is not always collected consistently on a national basis by ethnic minority groups. However, with the development of the national programme for IT, to which I shall return, registries will be in a position to collect data on ethnicity of patients. Once the IT is available, registries will be in a much better position to help to facilitate effective research in this area.

In recognising the progress that has been made, none of us is complacent. We still have a long way to go. In order to achieve our objective of being among the best in Europe, we must continue the good work on smoking cessation and reducing waiting times. We must fully implement national guidance on cancer services and drugs. We must prepare for the implementation of a national bowel screening programme, further develop cancer services in the community and ensure that patients are given good information about treatment and services. We must also ensure that patients who are dying from cancer are given the best care possible at the end of their lives.

A number of noble Lords have raised the issue of palliative care, and I should like to draw attention to the work undertaken by the national partnership group for palliative care, which is an excellent example of partnership working between the voluntary sector, the NHS and the Department of Health. Last year we allocated an extra £50 million to ensure consistently high standards nationally. That has enabled cancer networks to invest in 70 additional consultants in palliative care, 162 more nurse specialists and extra Marie Curie nurses to provide practical care to patients.

The investment is making a difference, and the NHS Cancer Plan has accelerated improvements in cancer services across the country by delivering faster treatment, higher standards and a better patient experience. Three years on, cancer remains a top priority for the Government and the NHS. I know that the noble Baroness, Lady Finlay, has concerns about whether the additional resources that the Government are allocating to cancer are reaching the parts that it should reach—to cite an advertisement. In the Government's view, ring fencing a specific programme for cancer or any other disease is not the way forward. Our overall approach is to devolve greater freedom to front-line staff and organisations and to give them the freedom to innovate and improve care for patients, based on local needs and circumstances. The NHS is receiving £12.7 billion extra over the next three years. It is for primary care trusts, in partnership with their strategic health authorities and other local stakeholders, to determine how best to use their funds to meet national priorities, including cancer.

Like other noble Lords, I pay tribute to the work done by the National Cancer Director, Professor Mike Richards. He published a report last May showing that. after some initial problems, the new money for cancer services that was announced as part of the NHS Cancer Plan is now reaching those services. We will repeat that exercise to ensure that the extra £570 million promised in the Cancer Plan for 2003–04 reaches front-line services. From that experience, we know that good quality national data are essential for monitoring delivery of the NHS Cancer Plan and identifying where performance needs to improve. As my noble friend Lady Hayman said, keeping track of trends is critical for focusing our effort on prevention and treatment and determining where we direct our research effort. That is why the work of the cancer registries is so critical.

We welcome the work undertaken by the regional cancer registries since they started collecting population-based data on cancer more than 40 years ago. They have come a long way, most particularly in recent years. They now operate within a national core contract, work to common standards and will shortly be subjecting their work to scrutiny by a process of peer review. We now have a national co-ordinator for cancer registries, working directly to Mike Richards, in supporting the cancer registries as they continue to develop. Professor Richards personally chairs the National Cancer Registry Advisory Group to oversee their development.

In particular, we have been pleased with the action taken by the registries in England to modernise the ways in which they collect data on cancer incidence and to ensure that those data are fit for purpose. Over the past three years, we have invested £6 million in the cancer registries to enable them to deliver action plans for new technology and new ways of working, which they developed in line with the recommendations made by Professor Charles Gillis in 2001 in his review of cancer registration, to which a number of noble Lords have referred.

The noble Baroness, Lady Masham, raised the issue of the speed of registration of cancer patients. At present, registration is a highly manually intensive process. A wide-ranging process of technical reform is now being undertaken to try to make the UK system a much more sophisticated one. This process is closely aligned with the NHS national programme for information technology. A common system of automated electronic messages will contain all the relevant information about cancer patients to be sent from NHS trusts to cancer registries. These messages will allow the cancer registry data set to be constructed and available almost in real time, tracking events during the patient's journey. That will in time ensure greater consistency, accuracy and timeliness in the data they collect and publish. It will allow further developments in their ability to support local and national health communities in monitoring cancer trends; to evaluate the success of, for example, prevention and screening programmes; and to inform planning of services.

I recognise that there is still some way to go to ensure that the data which registries collect are uniform and consistent across the country. Things will improve as cancer registries modernise and as the national programme for information technology rolls out, incorporating collection of the national cancer data set.

Registries themselves are becoming more focused on monitoring information for local health economies, looking at inequalities and influencing local and national service planning. Through more timely information collected through the national system, cancer registries will provide better support for health service research, genetic counselling, evaluation of screening programmes, and national and local clinical audits.

Each regional registry currently works closely with a regional director for public health. In order to provide a more strategic surveillance and information service at a regional level, which will enable the regional directors of public health to obtain a broader picture of disease trends across their areas, the regional cancer registries and the public health observatories will develop protocols for joint working over the next year. To achieve that, the next stage of modernisation for cancer registries will be to review their boundaries, where some realignment may be necessary in some places, and their funding arrangements with the Department of Health's Chief Medical Officer and the regional directors of public health. I hope that that is of interest and some reassurance. I will develop it a bit more for the noble Lord, Lord Clement-Jones, and other noble Lords who touched on the issue.

At a national level, it is important that cancer registries continue to provide data, which enable the UK to compare its position on cancer survival over time within Europe and with the rest of the world.

Before moving on to funding, I take this opportunity to commend the work of the UK Association of Cancer Registries and the Office for National Statistics, which both play key roles in the development of data collection systems and the processing and analysis of the data from the nine cancer registries.

A number of noble Lords mentioned the issue of funding for cancer registries, which has been included in the overall expenditure on cancer services through local commissioning arrangements. We are aware that the nine cancer registries in England have been providing a range of different services for their local health communities and have been funded by local commissioners of those services through local agreements. Consequently, there are differences across the country in the funding received by cancer registries. When I was briefed for this debate, I discovered a rather complex system for getting money to the registries, which the noble Baroness, Lady Finlay, and others have identified.

The registries also provide national data. We need a funding system for the future that will be more equitable and also support their regional and national roles. This new funding arrangement will be consistent with the moves towards providing a regional and national cancer intelligence service that works with other disease surveillance done by the public health observatories. We intend to implement a new funding system for cancer registries in the coming year.

I well understand the concern about the potential impact of patient confidentiality on the ability of cancer registries to collect scientifically valid data. The noble Baroness, Lady Finlay, and others have drawn attention to the need to link records from different sources. That requires cancer registries to hold patient information in a form that identifies individuals—information which is held in confidence by the NHS. Information is provided to them by many sources. It would not be practicable at the present time to ask each and every patient whether they consent to this important use of their information, as confidentiality law might require. This system has operated successfully for many years, and has led to the UK having one of the best cancer registration databases in the world, with 100 per cent national coverage, as the noble Baroness, Lady Finlay, recognised. We need to continue to make strenuous efforts to protect patient confidentiality wherever possible. We believe that it is necessary to explore all available avenues before seeking to introduce legislation that would, in effect, make cancer a notifiable disease.

As noble Lords have acknowledged, Section 60 of the Health and Social Care Act 2001 provides cancer registries with interim arrangements that allow them to collect patient-identifiable data without consent, while we seek to implement technologies through the national programme for IT in the NHS that would allow the registries to process anonymised information. Those arrangements are overseen by an independent statutory body, the Patient Information Advisory Group, as noble Lords have indicated. It will review the powers available under Section 60 on an annual basis and will advise the Secretary of State for Health if and when it is appropriate to reduce the support available to cancer registries or, indeed, recommend that it is appropriate to give registers a permanent statutory basis. At present the body is not working itself out of a job, as I think my noble friend Lord Rea seemed to suggest, or certainly inquired about. I share his and other noble Lords' view that PIAG has done a very good job in maintaining public confidence.

According to the advice I have been given, eventually electronic systems will support the linkage of anonymised records so that cancer registries no longer need to hold information that identifies individuals. As my noble friend Lord Turnberg suggested, it remains to be seen whether the wonders of IT will ultimately remove the need for identifiable data for the purposes of epidemiology. I share some of his scepticism about whether that is achievable. We shall have to see. But certainly for the next few years while the technology is not available to achieve that, cancer registries are permitted to collect and hold the data by regulations made under Section 60, so they have a secure statutory basis on which to do their work. It is aggregated before any publication to ensure that patients cannot be identified from the data.

The good practice required of those supported by Section 60 has actually improved the level of safeguards for patients. The support provided under Section 60 to the cancer registries has been through an annual review by PIAG, and the registries were commended on their progress in developing new practices and meeting the requirements set by PIAG. At this stage we see no need for further legislation to protect the confidentiality of patient information held by cancer registries at this time.

I am aware of the argument expressed by a number of noble Lords that cancer should have similar legal status for reporting purposes as infectious diseases. I am sure that my ministerial colleagues in the Department of Health will want to consider the very authoritative remarks made by noble Lords in the debate, particularly those of my noble friends Lady Hayman and Lord Turnberg and the noble Lord, Lord Walton. I believe that my noble friend Lord Rea touched on the following matter. It is well known from the infectious diseases field that simply making returns statutory does not necessarily guarantee 100 per cent ascertainment, or good quality, or acceptable timeliness.

The question of the effect on research was raised by my noble friend Lord Turnberg and others. Researchers can apply for PIAG support. We accept that there has been a degree of confusion within the clinical community regarding the legality of data submission to cancer registries. The Department of Health and the UK Association of Cancer Registries have worked hard with PIAG and bodies such as the GMC to provide a clearer statement of legality. Clear guidance is provided on the DH website and at the UK Association of Cancer Registries site. We understand that further guidance is shortly to be issued by the GMC.

A number of noble Lords referred to the need to clear applications with PIAG. My understanding is that the majority of applications—as I believe my noble friend Lord Rea said—have been approved. I understand that PIAG approved the cancer registries' application to collect and hold patient-identifiable data but that researchers need to apply to PIAG to use identifiable data collected elsewhere for specific research, so there is a certain bind in that area. We are not altogether aware that that has been an insuperable problem but I should be glad to consider any evidence that my noble friends Lord Turnberg and Lord Rea and any others have in that regard.

I hope that the cancer registries will continue to undertake their important function, and continue to develop and extend the services they provide, to ensure that we can all deliver the improvements in cancer services needed to reduce the number of deaths from cancer, and to improve the care of cancer patients.

This has been an important debate with impressive contributions. I am sure that my ministerial colleagues in the Department of Health who have responsibility in this area will study the debate very carefully in view of the authority of the contributions to it. I shall certainly study Hansard and if I have overlooked any points I shall write to the relevant noble Lords.

Baroness Finlay of Llandaff

My Lords, I thank all noble Lords who contributed to this very interesting debate. It has felt a little like a rich kaleidoscope—we have all been looking in the same direction but each from a slightly different angle.

I thank the Minister for his reply regarding funding of the important national resource of our registries. Unlike the Minister, I believe that we shall soon need clarification through legislation to enable secure data supply to cancer registries and to foster crucial research in the long term. In the mean time, I beg leave to withdraw the Motion for Papers.

Motion for Papers, by leave, withdrawn.