Limerick East): I am pleased to introduce the Health (Provision of Information) Bill, 1997, to Seanad Éireann. It is a critical part of the action plan on the implementation of the national cancer strategy which I announced last week.
The purpose of the Bill is twofold. It is designed to ensure that we can proceed with the establishment of national programmes of screening for breast cancer and cervical cancer and that the National Cancer Registry Board can continue to collect important data on cancer in Ireland. In both cases, my concern is to ensure that we comply with all legal requirements relating to data protection.
On 4 March 1997, I announced a major action plan containing full details of how the national cancer strategy would be implemented. I published the strategy last November. Last week's action plan gave details by region of how the many initiatives in the strategy would be funded and put into practice.
The main elements of the national cancer strategy involve reorganising cancer treatment services to promote a strong patient focus and ensure equity of access throughout the country, devoting resources to screening and early detection programmes of proven value, using health promotion activities to emphasise further the importance of healthy lifestyles, developing specialist palliative care services on a phased basis and facilitating greater co-ordination of cancer research.
The action plan which I announced on 4 March describes how the strategy will be implemented. The main elements include plans costing an extra £6 million this year for the development of cancer services in each region. The plans include additional consultant appointments for treatment services, development of palliative care and funding for research, the appointment of regional directors to co-ordinate services and develop a cancer plan for their region — further funds will be allocated in 1998 and 1999 to implement all of the provisions of the strategy; the appointment of a National Cancer Forum as promised in the national cancer strategy; the establishment of expert bodies to steer the implementation of national programmes of screening for breast cancer and cervical cancer and the introduction of legislation to ensure that the breast and cervical screening programmes comply with data protection requirements. Senators will see that the Bill before the House today is an integral part of the initiatives to address the problem of cancer and to implement the national cancer strategy.
Cancer is one of the biggest causes of death in Ireland. It accounts for 7,500 deaths every year, or one quarter of all deaths. In the under-65 age group the proportion is even higher again, at one third of all deaths in this group. We describe deaths among those under 65 years as premature mortality. Many of them can be prevented. With this in mind the national cancer strategy focuses on steps to reduce premature mortality from cancer. The cancer strategy reiterates a key target set in the national health strategy, published in 1994, namely, to reduce the deaths in those aged under 65 years by 15 per cent in the ten year period to 2004.
Of all deaths from cancer in those aged under 65 years, breast cancer accounts for nearly 10 per cent. About 660 women die each year from breast cancer. Cervical cancer accounts for a further 60 to 70 deaths each year. Expert advice is that between 20 and 30 per cent of deaths from breast cancer among women aged over 50 years could be prevented if a quality mass screening programme were established. International studies indicate that programmes should be aimed at women aged between 50 and 64 years. To date, there is little evidence to support breast screening among women under 50 years of age.
In the case of cervical cancer, there is evidence that, where a pre-malignant condition known as CIN is identified, it can be treated with almost 100 per cent success. CIN usually precedes cervical cancer so identifying it before it develops further is very important.
The potential value of screening programmes for breast cancer and cervical cancer lies in their ability to reduce significantly the number of deaths from the disease. Any programmes that we develop must be very carefully organised and based upon the highest quality practices so as to ensure that we get the best results. We are fortunate to have had a very valuable pilot programme of screening for breast cancer, known as the Eccles breast screening programme, since 1989. My Department funded the programme which was organised by the Mater Foundation. The experience of the pilot programme will be very valuable now that we are moving to establish a national programme. The Eccles breast screening programme underlined the importance of organising screening carefully on a phased basis so that the lessons of each stage can be taken into account before the next phase proceeds.
In the area of screening for cervical cancer, we have the benefit of an expert group whose report I published with the national cancer strategy last November. The report of the working party on cervical screening recommended that a national programme of cervical screening should be established for women in the 25 to 60 age group. I accepted this recommendation and have now established the advisory committee recommended by the expert working party to oversee the implementation and monitoring of a national programme. Again it will be important to run a pilot programme in the first instance to ensure that the national programme operates in the most effective manner.
We are now ready to move to the next stage of preparing national programmes of screening for breast cancer and cervical cancer. However, there is one critical element that must be put in place before we can proceed. We must ensure that the proposed programmes comply with all legislation relating to data protection. That is the principal purpose of the Bill before the House today.
Expert advice is that both programmes must have a population register which can be established and regularly updated. The purpose of the population register is to have the names and addresses of women in the target age group so that they can be invited for screening. The registers will need to be updated constantly so that women can be invited to attend as soon as they reach the appropriate age. The women's details can then be retained on the registers until they move outside the target age group but the first concern is to ensure that we can identify all women who should be offered screening for the first time.
There is no such population register available to us at present. Therefore it will be necessary to draw upon data from a number of existing sources such as the GMS Payments Board, the Department of Social Welfare and health insurance companies. The names and addresses of women must be obtained from these sources and used to create a national population register for the age groups concerned. However, under current data protection legislation it does not appear to be possible for these sources to pass personal details to a third party such as a screening programme. An important principle of data protection is that personal information, such the names and addresses of individuals, should be used only for the purpose for which it was originally collected. There can be little argument that in this case the information is required for a very important purpose, but the legal advice available indicates that we require specific legislative authority to proceed.
Section 1 of the Health (Provision of Information) Bill sets out to confer this legislative authority. It provides that a body participating in any national programme of breast or cervical screening authorised by the Minister for Health may request information from any person regarding names, addresses and dates of birth so that, for public health reasons, women may be invited to participate in that programme. The section enables any person requested to provide information for this purpose to do so. The important elements to note are that the screening programme must be authorised by the Minister for Health, the information must be requested for the purposes of compiling and maintaining a record of women who may be invited to attend for screening and the purpose of the screening is for reasons of public health.
Senators will notice that the section is enabling rather than mandatory. It does not require any person or agency to provide the information requested but it is expected that all agencies such as the General Medical Services Payments Board and the Department of Social Welfare will be anxious to co-operate fully in such important programmes as screening for cancer. Senators may also note that the cancer screening programmes — and the National Cancer Registry Board with which I will deal in a moment — will be governed by the Data Protection Act in how the information made accessible to them is stored and used.
I understand the issue of prostate cancer screening is of concern to a number of Senators. This issue was considered by the cancer strategy group which advised me on the drafting of the national cancer strategy. The group's view was that current evidence does not support an organised screening programme for prostate cancer. There is medical consensus on the need for large population studies to assess the benefits of screening programmes and a large population study on prostate cancer screening is in progress in the European Union. The results are expected in 1998. The national health screening committee in the United Kingdom has recently concluded there is no evidence available at this time for the introduction of a prostate screening programme.
I have no difficulty, in principle, with the concept of an amendment such as that proposed by Senator Finneran but I emphasise I can give no commitment to a screening programme for prostate cancer unless and until there is adequate medical evidence to support its effectiveness. The wording of any amendment must be carefully drafted and it would be unwise to insert something today without consultation with the Attorney General's Office or the parliamentary draftsman. If it is acceptable to the Seanad, I can have an appropriate amendment prepared in time for the Dáil's consideration of the Bill on 25 March. The amendment would then be resubmitted to the Seanad on 26 March.
The second major element of the Health (Provision of Information) Bill is to enable the National Cancer Registry Board to continue collecting important data on cases of all forms of cancer. The board is a statutory body established in 1991 under the Health (Corporate Bodies) Act, 1961. Its functions include the collection and analysis of information on each newly diagnosed case of cancer. Its main task is to gather and analyse information on the incidence and relevance of all types of cancer in Ireland. The data it collects are very important for epidemiological and research purposes. The board's work forms a critical part of the initiatives announced in the recently published national cancer strategy. Senators will be interested to note that the board's first national report on cancer is being finalised and will be published soon.
To allow the board to have a complete and detailed picture of cancer in Ireland, the information supplied to it by hospitals must include the name and address of each patient diagnosed. There are a number of reasons for this requirement. First, it is vital for the National Cancer Registry Board to be able to trace patients across episodes of treatment in different hospitals. Its data must be consistent and accurate in this regard. The board's experience and that of cancer registries internationally is that access to the names and addresses of patients is the only reliable method for achieving this cross-matching.
Second, the National Cancer Registry Board also collects data on deaths from cancer. As part of this task, it must update its records on patients diagnosed with cancer who subsequently die. The registry uses information from death certificates for this purpose. Again, both international experience and that of the National Cancer Registry Board is that it is not possible to link cases currently registered with those who die from cancer unless the name and address of the patient is available.
Questions have been asked about whether it is permissible under current data protection legislation for hospitals to supply data of this kind to the board. I am anxious to resolve any questions about this matter so that the National Cancer Registry Board can continue its important work. Failure to resolve the situation now could deprive the board of vital sources of data, its ability to collect accurate information would be greatly hampered and its role in helping analyse the incidence and prevalence of cancer would be severely curtailed. Its contribution to cancer research would also be reduced.
To avoid any possible doubt about the legal basis for the National Cancer Registry Board's current arrangements for obtaining named patient data from hospitals, the Health (Provision of Information) Bill provides that the board may request this data for the purposes of any of its functions. It also provides that the persons requested to supply the data — hospitals — may do so. It is important to note that this provision merely safeguards the present position and does not confer any additional powers on the National Cancer Registry Board. It should also be noted that the Bill enables the board to request and obtain this information specifically for the purposes of any of its functions. These are set out in the National Cancer Registry Board (Establishment) Order, 1991, and the board would not be permitted to obtain named patient data for any other purpose.
There are no direct implications for staffing or costs as a result of this Bill. The full costs of the programmes of screening for breast cancer and cervical cancer are included in the action plan I announced last week and in the proposals I brought to Government before I published the national cancer strategy last November. As I mentioned earlier, I have allocated an additional £6 million for the development of cancer services in 1997. This includes preparations for establishing the national programmes of screening for breast cancer and cervical cancer. I have also announced that the implementation of the complete set of initiatives on cancer will continue in 1998 and 1999 and that the full package of developments, including the screening programmes, will cost an extra £25 million when all the initiatives are in place. There are no cost implications for the National Cancer Registry Board as a result of the proposal to safeguard its position in relation to collection of data from hospitals.
This Bill is a very important element of the action plan on cancer which I announced on 4 March. It is legislation vital in allowing the programmes of breast screening and cervical screening to proceed. Without it, the programmes cannot go ahead. It is also very important in the context of the National Cancer Registry Board's work.
I commend the Bill to the House.