Health (National Cervical Screening Programme) Amendment Bill

I move, That the Health (National Cervical Screening Programme) Amendment Bill be now read a third time. This bill replaces section 74A of the Health Act, which established the national cervical screening register. The purpose of the bill is to reduce the incidence and mortality of cervical cancer through the National Cervical Screening Programme, referred to as NCSP, and to facilitate the operation and evaluation of the programme. It also sets clear objectives for the National Cervical Screening Programme and will enable experts, called evaluators, to assess the performance and safety of the programme.

This House has decided to ensure that our National Cervical Screening Programme is of a “gold standard”, which were words used by Dr Euphemia McGoogan when she looked at New Zealand’s programme and said that it needed to decide what sort of programme it wanted—whether it wanted one that could not be properly audited, or one with an audit and evaluation process that could ensure a gold standard. This legislation is a positive step toward New Zealand women’s health. It strengthens evaluation procedures and will ensure that the National Cervical Screening Programme can undertake evaluations that are absolutely crucial to the continuous improvement and quality assessment of the programme.

The passing of this bill gives effect to four specific Gisborne Cervical Screening Inquiry recommendations. The bill is a continuing part of the history of cervical screening in New Zealand, which goes back to the 1960s. It has been the subject of two major inquiries, the first being that by the then District Court Judge Silvia Cartwright in 1988. One of the key recommendations from that inquiry was the establishment of a nationally planned cervical-screening programme. The National Cervical Screening Programme became operational in 1990. Evidence shows a reduction of 22.5 percent and 46.3 percent for cervical cancer registrations and deaths, respectively, for women of all ages between 1990 and 1998.

Members may recall that in October 1999, the then Minister of Health, Wyatt Creech, established a committee of inquiry to look at the apparent under-reporting of cervical smear abnormalities in the Gisborne region. The committee of inquiry delivered its report on 10 April 2001. During the inquiry it became clear that statutory barriers preventing access to information were obstructing the comprehensive evaluation of the programme. Post the Gisborne inquiry, the programme has undergone significant improvements over the last 3 years—the introduction of policy and quality standards, increased national leadership and screening services, and the establishment of a national leadership role in the development and implementation of health promotion strategies, to name but a few. As of 1 February 2004, just under 1.1 million women aged between 20 and 69 were enrolled on the national cervical screening register, which is 99 percent of the eligible population.

The bill that is in its third reading has been subject to robust and widespread debate. A number of very positive changes have been made since the bill was introduced in the House in May 2002. It was sent to a select committee and reported back to this House with major changes made after select committee members heard the evidence presented to them.

I take this opportunity to thank the members of the committee for the very solid work they put in on this bill to ensure that we had majority acceptance when we finally came to considering it in the Committee of the whole House. I particularly want to thank the chair of the committee, Steve Chadwick, who took the bill through the committee. I make particular mention of Dr Lynda Scott, the National spokesperson on health, and her commitment to us having a cervical screening programme that works and that is of a gold standard. I know that she put in a lot of work to ensure that her colleagues were convinced of what was being undertaken and the changes being made. I also acknowledge Barbara Stewart from New Zealand First for her contribution, for listening to what was put before her, and for ensuring that it was supported in the House. I thank Heather Roy, who—and I will talk about some of these things in a moment—came up with recommendations at a later date that have now been included in the bill that will become the Act. I also acknowledge Judy Turner, who has been a stalwart in ensuring that we get this bill through the House with changes that make it work for the women of New Zealand. I acknowledge the role that Sue Kedgley has played. She has not agreed with what is going through the House in its totality, but she did support a review of the programme in an ongoing way.

The bill had very convincing majority support in this Chamber during the Committee stage. That was really important to me as Minister, and I publicly thank Selwyn Katene from my office, who did a lot of work in ensuring that there was negotiation and work done around getting as much agreement as we could on this bill.

Once the bill had been reported back we met in my office to see whether we could improve it further, and out of that came a number of recommendations that I think have been very important. The independent review committee suggestion—as I have said—came from Heather Roy, and that has been included in the bill. There will now be an independent review of the National Cervical Screening Programme. The review committee will review it once every 3 years. That has now been written into law, and I think that gives some level of confidence that it will be an ongoing, independent review of this programme.

There was also the issue of ensuring that women were advised about the National Cervical Screening Programme, thereby giving them the opportunity to know what the programme was about, and to be able to give their consent. That issue, I have to say, was also led by Dr Lynda Scott and, if I recall correctly, Heather Roy and Sue Kedgley were very keen to see that women were informed about the programme.

The evaluation issue was one of the hardest issues we had to deal with. It is worth noting that in the reviews that have been done of this programme, including the Gisborne Cervical Screening Inquiry, this was one of the most important things said about the programme, and I quote from the Gisborne inquiry: “The choice for the Programme is stark. Effective evaluation can not be guaranteed if women’s consent is required; if the right of an individual to consent to access to her now-protected information is to predominate the Programme cannot effectively evaluate its effectiveness and therefore the safety of all women participants is potentially at risk.” That is a direct quote from the Gisborne inquiry. What we have endeavoured to address here is the ability to evaluate this programme.

As far as I was concerned, one of the most powerful comments made when we were looking at this issue was by Heather Roy, who was an evaluator in her former life. She made the point that in her knowledge of evaluators, they are not interested in looking at the salacious history of women, at their other records, or at any person they are evaluating. They are highly skilled people who look at the job in hand and evaluate the programme or process to ensure that we are able to know what works and what does not. I believe that the amendments we have made to ensure that when records are required from a general practitioner, for example, those general practitioners can have oversight of the information, strengthen the bill somewhat. I know that Dr Scott would have liked to strengthen it more in terms of opting off that, but the House decided not to do it. I was extremely pleased when we got to the end of the evening that this House, by an overwhelming majority, accepted this bill as the right approach for us to strengthen the National Cervical Screening Programme.

I conclude by saying that I have not covered all the things that were covered in the bill, but I know that other members will. I give heartfelt thanks for the work that was done. It was important to the women of New Zealand that we got as much agreement as we could and did the best possible job on this legislation.

It is with pleasure that I rise to speak on the Health (National Cervical Screening Programme) Amendment Bill. This bill has the support of all parties in this House, except the Greens. The select committee worked very hard and gave a great deal of thought to progressing this bill in a way that gave effect to the McGoogan report after the Gisborne Cervical Screening Inquiry, which, as we have heard, was set up in 1999 by Wyatt Creech due to under-reporting.

In New Zealand we have had a history of concerns about informed consent, caused initially by the Cartwright inquiry looking into the practices at National Women’s Hospital at that time. What it has done is heighten New Zealand women’s concerns in this regard to informed consent. We had regard for that issue around the select committee table and in our caucuses. I was very pleased that following debate we managed to make changes after the bill had been reported back to the House, and before the Committee stage, to look at ensuring that women would be informed of these issues with regard to this programme, which is an opt-off programme, via a letter about the changes this bill makes—that is, access to primary-care records as well as hospital records. The material will be provided on an individual basis to the 1 million women who are on the programme, and, if they have concerns, they will have the option at that point to opt off the programme. The programme has been an opt-off programme since 1993. It is particularly important that we continue to have a national cervical-screening programme, because it has reduced mortality for women.

From 1990 to 1993, the programme was an opt-on programme, where women had to sign up to the programme. In 1993 we saw from a month-by-month breakdown that it had become static. Women were not signing on. The change made then was that the programme became an opt-off programme. An opt-off programme means that when a woman has her first smear, she becomes registered in the programme. At that point she gets information sent to her. If she does not wish to remain on the programme once she has been fully informed of what it means to be on it, she can then opt off.

I am pleased that a letter will go to every woman who is on the cervical-screening programme to tell them about the changes this bill makes. There were many changes, but the most important one related to concerns raised about access to primary-care records. Once women have been informed, they can opt off the programme. I sincerely hope they do not. I do not want to see New Zealand women opting off. It has significantly reduced mortality in New Zealand. We originally had a death rate much higher than we have now. In 1981 we had a rate of 12 women per 100,000 who developed the disease, five of whom would die of it. In 2001 the rate reduced to 10.6 per 100,000, of whom only three died of it. That is a 46 percent reduction in mortality. We know that if the screeners who are doing the test are audited and competent, if the laboratories that are looking for that needle in the haystack—that is, those abnormal cells amongst all the normal ones—are audited and competent, if the data is collected and kept, and if the whole programme is audited so that women can have faith in the whole process of the cervical-screening programme, then we will reduce even further the incidence of cervical cancer and people dying from it.

The thing about informed consent is that women will be able to opt off once they are informed. I wish to talk to that issue further, because I do not want women to opt off the programme. I brought in an amendment, which was not passed, that would allow women to opt off only one section—that is, the ability for investigators to look at primary-care records. It was not that I was greatly concerned in that particular issue; it was that I did not want to see women opting off the whole programme, because then they would not get a recall notice. If women stay on the cervical-screening programme, I believe they can have faith and confidence in it.

Originally, this bill was to be a national screening programme template, covering all other screening programmes. If we look at the role of evaluators in New Zealand, we will see they are not trawling through notes to look for individual information that they can then tell anybody about. They cannot do that—they would be struck off for doing that. They never have been able to do that. At the moment we have accident compensation audits and we have health pac audits. Those auditors do not go through and look at all the women’s personal details and then have an ability to tell anybody about them; they look specifically for information to do with whether the service one said one would be delivered is delivered, or, in the case of cervical screening, to ensure that the cervical-screening programme is working. In this particular situation, the information will relate only to that which is relevant to the programme.

I was also pleased that arrangements were made for primary-care practitioners to be involved in overseeing evaluators’ access to health information. This will mean that the primary health-care practitioners are supportive of the evaluation that involves accessing the primary-care records. It also means they will be able to oversee that someone is able to find the data they need with speed, and to look just at that data.

So I believe that New Zealand women can have confidence in this programme and in confidentiality with their general practitioner. Its expansion to other screening programmes was considered to be not appropriate. It was felt that this bill should be about the specific programme it was dealing with—that is, the National Cervical Screening Programme—and that if we needed other legislation, say, for the breast-screening cancer programme, or if at some time in the future we develop a screening test for prostate cancer that has more reliability and validity, then that also would need to go through the House as a separate bill rather than have expansion of the bill we are debating tonight.

The reason that prostate cancer is not part of a routine paid-for screening programme is that the test, which is the prostatic sensitive antigen test, is not specific enough and has a high rate of false positives and false negatives. With screening programmes such as the cervical-screening programme or the mammography programme, there is a high level of certainty that one will pick up the changes that may lead to cancer further down the track; also that the treatment one can then offer can effectively reduce the mortality—and that occurs both in cervical cancer and in breast cancer. But I am sure that most men in New Zealand are really hoping that a test will be developed in the future that has that sort of specificity for prostate cancer, as that is one of their leading causes of death.

We will be supporting this bill today. We were pleased to see the changes that members of the Health Committee made as we worked together in the select committee and then as we met with the Minister of Health afterwards to continue to raise the concerns that our caucuses had and to negotiate further arrangements to make changes to this bill. Those changes have been made, and we support the passage of this bill today.

I am delighted to be given an opportunity to speak about this bill today, and I would like to thank all my colleagues on the Health Committee. This is one of the workings of Government that I think is often overlooked in terms of reporting Parliament—that is, watching how select committees work. In this particular case, with a majority on the select committee being women, we really did focus in on this Health (National Cervical Screening Programme) Amendment Bill with great concern. We were all reminded about the inquiry in Gisborne, called in 1999. We were all very aware of the need for women and their families to find answers for the current cervical cancer rates and we wondered how on earth we were ever going to improve mortality and morbidity figures.

The inquiry looked into the under-reporting of cervical cancer. That was the main problem with cervical smear anomalies. An under-reporting of these anomalies caused unnecessary delays for treatment and follow-up, and we all shared the anxiety of the women who went through the Gisborne inquiry. The inquiry highlighted several problems with the current cervical-screening programme. Many of us were aware of them. I managed a women’s health service at the time, and was very aware of some of the barriers to a robust cervical-screening programme approach. The inquiry identified those barriers and said that the main issue for us to focus on in this bill was that the information needed by evaluators of the programme could not be collected adequately, or was exceptionally difficult to access because they had to get the consent of the women. Often those women could not be traced, thereby resulting in a missing piece of the puzzle. At that stage evaluators had access only to hospital laboratory specimens and findings, and the clinical record when women were in hospital or secondary care. There was absolutely no linkage with when women first went to their general practitioner or to what was contained in their health record held by general practitioners or midwives that was very, very pertinent to their cervical-screening history.

The subsequent amendment to this bill that came in was thanks to my colleagues Lynda Scott and Heather Roy, and I really would like to thank them. It showed how we can all work collectively to address the concerns of the women of New Zealand. This Supplementary Order Paper takes away those barriers that were identified by Dr Euphemia McGoogan in her four recommendations that said we had to look at legislation that would amend the old Act. It was a 1956 Act that we had been functioning under, and that is a long time ago. Cervical-screening programmes had really overtaken the way the Act was set up to implement screening programmes. Ithe recommendation was clear that evaluators had to have access to all medical record files—all of them—recording the treatment of cervical cancer, and it was also an issue that concerned Sue Kedgley in terms of privacy issues. We all were concerned—all of us. We too did not want to see people trolling through records, but those of us with a health background—and this was really interesting with my colleagues—absolutely understood the value of relationships in the health sector. They knew about evaluators in this health-screening programme, they knew they were trained, they knew they did not go in and troll right through the record, and they knew about the need for access into that primary record.

Lynda Scott proposed an amendment, and it went to Professor David Skegg, who said it would weaken the current programme, and that is why the amendment was rejected. How else, without going into that primary record, would we ever learn about risk factors, presenting symptoms, referral patterns on to specialists and secondary care, intervention rates, current treatment methodology, and even whether it is effective, if we did not have access to the primary record? It was as fundamental as that.

This bill addresses the legal barriers that are preventing that comprehensive evaluation of the programme from proceeding. The Supplementary Order Paper strengthens provisions around privacy issues. Those were the things that we brought the Minister back to the select committee about. We put her under robust investigation about the process behind the recommendations that first came to us in the bill and we then went back again and looked at the informed consent provisions that worried us all. Informed consent was absolutely paramount. It had to be a procedure undertaken between the smear-taker and the woman, or, in fact, the specialist, when a gynaecological investigation is undertaken, which is usually done in a secondary environment. Women have to know that evaluators will be accountable to general practitioner oversight. They do need to be informed about that, and that only information and specimens that are relevant to an evaluation will be accessed. The independent programme review committee that is proposed will be separate from the Ministry of Health, and I think that is a very robust strategy that is in the Supplementary Order Paper, and a review and evaluation of the programme in 3 years will ensure we now have a procedure for ongoing continuous improvement.

In conclusion, with this approach and the support for the bill, it is a pity we did not get universal support from all parties. If only we could have gone out there to the women of New Zealand to say that we are all with them on this, that we all buy into it, and that it includes all of us in the health field. I know that we will reduce the current rate of 70 to 75 New Zealand women who die of cervical cancer each year. I know that those rates will improve.

On behalf of New Zealand First it is my pleasure to rise and speak on the Health (National Cervical Screening Programme) Amendment Bill. New Zealand First supports this bill. We were really pleased to see the changes that were made. We know that this bill is of particular importance to the women of New Zealand and their families. The purpose of the legislation is to ensure that the programme is safe—and that includes all parts of the programme. Members of the Health Committee worked through all aspects of the legislation to ensure that the programme is robust. We know, too, that maximum numbers of New Zealand women need to be on this programme if cervical cancer morbidity is to be reduced. The figures show already that there are a million women participating in the programme, and a 99 percent participation rate really speaks for itself.

I must pay a tribute to the Minister of Health and her officials for ensuring that the concerns we had with the legislation were extensively discussed and the solutions worked through. I must also pay a tribute to the chair of the select committee and all the committee members for ensuring that the bill was the best possible thing for the women of New Zealand. We want the best possible programme, and we want a gold-standard programme. Everybody deserves access to the best possible health care, and access to the programme by the women of New Zealand will occur only if they are satisfied with the programme. This is a very positive programme for women’s health.

New Zealand First was particularly pleased with the independent review committee requirement. The monitoring and auditing of practices, and the results will assist in the elimination of under-reporting, such as there was in Gisborne, and the misdiagnosis that came to light in the Northland area. The bottom line is that we cannot afford to have misdiagnosis and under-reporting of abnormalities in any programme. We do not want any results to slip through the cracks in the way that has happened in the past. I think we have learnt from past mistakes and we will not repeat them, and I think this legislation assists with that. The formation of the independent review committee is definitely a step forward for this screening programme. The requirements for the programme review committee and its membership are very clearly set out, and women can have faith in the process that is outlined in this legislation.

The report, its tabling in Parliament, and its subsequent public release will also ensure that the public of New Zealand have access to the data on the effectiveness and quality of the National Cervical Screening Programme, which is vitally important. I must admit that, initially, I was one of the people who had some misgivings regarding the privacy of women’s primary-care records, but I have worked through this issue. I am totally reassured by our select committee, the Minister of Health, and the ministry officials that access to primary-care records by screening-programme evaluators for evaluation purposes will be strictly controlled, and controlled by the doctor’s practice, and will be limited to information directly related to cervical screening. Audits of primary-care records already occur, so this is nothing different. Unless this programme, too, is allowed full access to primary health-care records, the programme evaluation would be compromised and the legislation would not be achieving its main purpose. That is something we do not want. We want the programme to achieve its purpose of reducing the number of women who have or are likely to have this tragic cancer.

I particularly like the fact that every New Zealand woman on the programme will be notified as to the changes in the legislation, and what is going to occur in this programme. The notification about access to their primary health-care records and of their ability to opt off the National Cervical Screening Programme will reassure many New Zealand women. I think that many women are not aware of the forthcoming changes, and I can say that we all look forward to receiving this information in the mail. This programme is absolutely vital for the women of New Zealand. We want to ensure that the numbers of women on the programme are maximised, as only then can cervical cancer morbidity can be reduced. The death rate now is very much reduced, and we can attribute that to the programme we already have in place.

We all know that early detection of problems is the very best way to detect precancerous conditions, which can often be treated before cancer develops. Early detection always has been and will continue to be the best prevention. New Zealand First looks forward to following the progress of this vitally important programme for New Zealand women, and we totally support this legislation.

When this bill first came to the House members of the Green Party enthusiastically supported it because we believed it would strengthen the National Cervical Screening Programme—a programme that has been dogged with controversy in recent years, and was, in our view, much in need of strengthening.

The bill as it was originally drafted struck a good balance, we believed, between the need to obtain sufficient information to run an effective national screening programme while at the same time protecting women’s sensitive, personal, medical, and general practitioner records. It allowed evaluators automatic access to all laboratory records, to hospital records, and to all the information that is on the screening register, but protected the vital general practitioner records. But, sadly, in the amended version of this bill, which was passed last week, that carefully worked out balance, in our view, was abandoned, and we now have a bill that will allow automatic access to the general practitioner and personal health-care records of all women enrolled on the programme, and, in so doing, will remove the confidentiality of the sensitive health-care records of more than 1 million New Zealand women.

The astonishing thing is that when the officials were originally drawing up the bill, they, very sensibly, consulted women’s groups around the country. They proposed a provision allowing evaluators access to women’s personal records. But there was such an outcry, such overwhelming opposition from women’s groups, that that provision was dropped, and Cabinet sensibly dropped the provision and allowed automatic access only to hospital records, laboratory records, and so forth. Given the overwhelming opposition by women’s groups to that provision, I am amazed that the majority of members of the committee voted to reinstate those controversial clauses, thereby presenting women in New Zealand with a cruel Hobson’s choice. Either they stay on what is otherwise a good and useful programme, surrender their right to informed consent, and allow automatic access to their personal health-care records without their knowledge or explicit consent, or they opt off the programme and risk their own health and the efficacy of the programme as a whole. This is a cruel Hobson’s choice that women will be forced to confront. Sadly, given the sensitivity of many women to their personal health-care records, we can expect that many women will opt off the register, and if that happens it will weaken the programme. It will not strengthen the programme—which is what this bill set out to do.

The Green Party’s view is that consent should always be sought before a person’s health care information records can be accessed. It has long been recognised that medical records contain highly sensitive and intimate information. They contain our medical history, and therefore need special protection. That is why we have a health privacy code—a code that says, amongst other things, that much medical and health information includes details of an individual’s body, lifestyle, behaviour, and practices that are particularly intimate and may, if improperly disclosed, be misused. That is why we have the stringent privacy provisions in the Health Information Privacy Code. Unfortunately, the provisions of this bill will set aside some of these provisions, and with it, I fear, the approach to privacy that New Zealand has taken for some time.

If one looks at the bill, one will see that whole sections are written in such a way that they will override and get around the Health Information Privacy Code and require doctors to provide access to general practitioner records. The requirement that doctors do this will, in our view, adversely affect the doctor-patient relationship. The knowledge that a doctor may be required to allow private patient records to be copied without a woman’s consent or knowledge will undermine the confidentiality and trust that is fundamental to the doctor-patient relationship. For more than 4,000 years doctors have had to pledge that they will protect the confidentiality of any information that is shared in a doctor’s surgery. We have a newsletter from the New Zealand Medical Association pointing out that the code of ethics of the World Medical Association and the New Zealand Medical Association state that doctors must preserve absolute confidentiality in all that they know about their patients, even after the patient has died.

The Minister mentioned the 1988 Cartwright report, which I have here, which recommended the establishment of a cancer registry—but that whole report emphasises the need to respect patient autonomy and uphold the right to informed consent. One of the specific recommendations states: “If such a register is set up it must be maintained under the strictest rules of confidentiality and privacy.” Unfortunately, as a result of this bill, we now have a register that is no longer operating under the strictest rules of confidentiality and privacy.

The astonishing thing is that officials have not, in my view, put up a rationale as to why these radical changes that will set aside the privacy of personal health information are required. As I have said, they already have access to the laboratory records, all the key information, the register that is needed to allow evaluators to evaluate the quality of smear taking and reading, timely access, and so on. Why, then, do we need this access to women’s general practitioner records? Officials have argued that that will be so they can evaluate whether women who develop cervical cancer were properly referred and treated by their general practitioners. But if that is so, and that is a sensible reason to look at general practitioner records, that does not justify the automatic access they are seeking to the general practitioner records of more than one million women because, as Steve Chadwick has said, only about 170 women develop cervical cancer each year, and it would be relatively easy to obtain the consent of those women to carry out an evaluation of their primary records at that time when they are diagnosed. I am absolutely confident that the overwhelming majority of women would be only too happy to give consent at that stage.

Other MPs have said that there is no need to worry because the evaluators will be able to automatically access women’s personal health information only if it is relevant to their research and evaluations, and that evaluators would not be interested in trawling through all the other records of patients’ personal information. But the problem is that the fine print of the bill allows evaluators to access a broad range of cervical health information—anything that they decide is necessary to perform their functions. Given that sexually transmitted diseases are thought to be one of the main reasons, one of the risk factors, in developing cervical cancer, evaluators could easily argue that the records of women’s sexually transmitted diseases and other things, such as previous pregnancies, were relevant for their research. The other thing is that they have suddenly said that doctors may—may—have oversight when the evaluators are looking through women’s records. They may—but then again, they may not. I do not know what other members think, but I know that most doctors are so busy that they will not have time to oversee this. Furthermore, general practitioner records are not conveniently organised around disease status, so evaluators may need to look through an entire record. But most important of all is that women do not want to hand over to doctors the responsibility for deciding what confidential health-care information should be handed over to authorities. They want to make that decision themselves, with their consent. So, frankly, the addition that they “may” have some oversight by doctors will not, I am afraid, reassure women who are concerned about protecting their private and confidential information.

Finally, the Minister said that letters would be written and that women can give their informed consent. The Minister actually said: “They will be advised of the programme.” I have never had it officially confirmed that letters will be sent to women, but certainly those letters will not require women to give their consent. All the letters will do is inform them of the programme. If a consent form was attached to the letters, then we would be able to talk about, as the Minister said, giving consent. But, frankly, that is not the case. I understand there are problems about how this will be contracted out and how women’s information will be obtained by contracted-out people.

It gives me pleasure to speak to the third reading of this bill. I would like to reiterate the comments made by many members on how constructively the work proceeded, particularly at the select committee level. There was great cooperation amongst the committee members. It may not sound like it from listening to the previous speaker, but in fact her concerns revolved around the privacy issues only. She certainly acted very cooperatively in other regards.

It is important to remember what the aim of the bill is—that is, to assist the operation and evaluation of the National Cervical Screening Programme. The bill also addresses the extension of these provisions to other screening programmes—or, it was to, but in fact that was changed during the select committee proceedings, and quite rightly so. This bill is very specific to cervical screening, and it was felt inappropriate to make the parameters available to other screening programmes that would have very different needs. The aim of screening programmes is to detect abnormalities early so that treatment can be begun early and the problems can be referred on.

The National Cervical Screening Programme costs New Zealand taxpayers $35 million every year. It is important to remember this. It is not a figure that is often heard. It is a lot of money out of the health budget, and that means we must spend it very wisely. If we had not spent the time getting things right at the select committee level, and during the Committee stage, which deals with amendments, this money would not be spent appropriately. I had a conversation with Professor David Skegg from the University of Otago, who is probably the foremost expert in New Zealand on cervical-screening programmes. I said to him: “Is this programme going to be good value for money, because $35 million is a lot of money? It could well be spent elsewhere. If we don’t get things right in this programme, then we would be better off just leaving each individual general practitioner to recall women and monitor the results.” He agreed with me entirely. At the end of the day I think we can content ourselves with the fact that this bill addresses the problems. We have addressed the problems that have arisen. I would like to compliment the Minister of Health on listening to the concerns of the Opposition, and addressing those concerns. We have come to conclusions that most of us are very, very happy with and will see a very good programme being put in place for the benefit of New Zealand women.

We have heard that cervical screening has had many rocky patches in New Zealand, and Dr Euphemia McGoogan’s reports have been instrumental in many of the changes. She has put forward many recommendations, some of which are still being worked through, and many have been incorporated in this legislation. We must not have knee-jerk responses when we hit rocky patches like the ones we have had with cervical cancer. It is very important that we do not have knee-jerk political responses to what are essentially medical problems. As I said, the committee has worked very constructively and what we have ended up with are scientifically based medical responses to this very medical problem. The opt-on and the opt-off provisions have been discussed at length. We know that we have had the opt-off programme since 1993, and when it comes to screening programmes some privacy issues have to be dealt with very carefully. It is essential with screening programmes that opt-off programmes exist because we know that the more people who participate, the better, and if we get 100 percent participation, the effect is much greater than if we have even a few people opting off. It is essential that an opt-off is the order of the day for the public good.

The ACT party supported this bill at its first reading so that it would go forward to the select committee stage. We did so because we realised the importance of having an effective screening programme. We opposed the bill at the second reading stage because we felt that some things had not been taken into account and that some issues had not been addressed adequately. I felt very strongly about two things in particular, and I said that the bill certainly would not get ACT party support unless those things were addressed. I would like to go through those. The first issue was the independent review of the programme. As the Minister said, that has now been put into the legislation and will happen at least once every 3 years. This is extremely important. Nobody, no matter how good she or he is, can be responsible for establishing a programme, setting it up, running it, and evaluating it themselves. Human nature means that all of us think we can do a very good job of whatever it is we are doing, but it is important that there is good-quality independent evaluation of the processes so that we get the best possible result. I am very proud of the fact that that has been put into the legislation, and also very pleased that that particular amendment has had unanimous support.

The second issue I felt very strongly about was the writing of the letters to each of the nearly 1 million women who participate in the programme. If every woman on the programme was not told of the changes that would come about as a result of the new legislation, particularly with regard to the accessing of primary-care records, and the privacy concerns surrounding that, there was danger that some women might not actually see their general practitioner before their notes would be accessed, and that, in the time lag, their records may be accessed against their will and they would have no say in this matter. The writing to every one of those women is extremely important, and I am very pleased that it will happen. I have had an assurance from the Minister herself that those letters will be written and will be under way soon.

With regard to the privacy issues, I would like to address some of the concerns of the Green member Sue Kedgley. I have, as the Minister pointed out, worked as an evaluator. I spent 10 years conducting research projects and have been involved with the evaluation processes. They happen in a very quick, efficient, and professional manner. Evaluators have a job to do, like everybody else. They access the records. Usually, they are not left alone to trawl through records, and they are looking for very specific factors that will be of benefit to an evaluation process. It is vitally important to the success of the programme that primary-care records can be accessed for this purpose. If that were not the case, the jigsaw puzzle would never be able to be completed. If we cannot do that, then we are wasting every bit of the $35 million that we spend on cervical screening. A very good example of this is the audit that is being conducted at the moment of the National Cervical Screening Programme. It has taken much longer than it should have done. There are many reasons for this, but one of the major reasons is that at the moment every single woman whose primary-care records need to be accessed has to give individual consent. Many of those women have shifted, some of them many times, and just cannot be found. Some of those women have died, and their next-of-kin cannot be found. Those records will never be able to be accessed. That means the relevance of the auditors in question, and certainly the quality of the information, will not be what it should be, even when the audit comes to a close.

In closing, I would like to say I am very pleased that this bill has majority support. The concerns of the Green Party are solely around the issues of privacy. With the passing of this legislation, I look forward to changes in the National Cervical Screening Programme that will see the saving of even more lives. Many lives have been saved over the years since New Zealand has participated in a screening programme for cervical cancer. With the passing of this legislation, I look forward to the mortality rate of cervical cancer dropping even further.

I rise on behalf of United Future to speak in support of the third reading of the Health (National Cervical Screening Programme) Amendment Bill. The bill has arrived at its final reading, having started with a crisis at National Women’s Hospital, then another in Gisborne, two inquiries—the more recent being the inquiry into the under-reporting of cervical smear abnormalities in the Gisborne area—and then a very thorough legislative process geared towards enhancing the operation and evaluation of the National Cervical Screening Programme. It has also had to weather a raft of concerns about informed consent, set in a climate that seems at times to have been obsessed with privacy.

The bill is an initiative where the tension between the privacy rights of the individual needs to be balanced against the success of a screening programme that relies heavily on a commitment by those who participate to the common good. It is not that the participants have to choose between privacy and common good. Rather, it is that the challenge has been to develop a bill that can wisely navigate a path between the two, so that both the programme and the women who participate are safe.

The programme is hugely reliant on numbers to ensure its overall success and safety. One recent development that has improved programme outcomes has been the change from an opt-on to an opt-off system. Without automatic enrolment the programme is seriously impaired in its attempt to decrease the incidence of cervical cancer in New Zealand. I reiterate the quote given by the Minister, from the Gisborne inquiry, because it is extremely important: “The choice for the Programme is stark. Effective evaluation can not be guaranteed if women’s consent is required; if the right of an individual to consent to access to her now-protected information is to predominate the Programme cannot effectively evaluate its effectiveness and therefore the safety of all women participants is potentially at risk.”

United Future welcomes the inclusion of an independent review committee. The opportunity to review the programme regularly, in its entirety, in contrast to the work of the evaluators who will be monitoring specific aspects of the programme, is a healthy development. Overall efficacy is always vital if we are to avoid the programme deteriorating and becoming a feel-good service that makes no measurable difference to the health outcomes for New Zealand women. It is also important that New Zealand women be kept informed about the findings of this committee. The all-important issue that we in United Future have kept before us in the consideration of this bill is the fact that screening programmes are not fully diagnostic, and are therefore open to a range of errors and false readings. The misbelief that this screening programme is fully diagnostic undermines the importance of the programme evaluators. Evaluation is an essential part of a cervical screening programme, not a feel-good add-on. The whole programme is rendered ineffective and even dangerous without it.

Beyond the issue of early detection and treatment of cervical cancer is the issue of prevention. Cervical cancer raises a lot of extremely sensitive issues about lifestyle choices. United Future believes that we do women a huge disservice when we fail to communicate successfully the clear facts to both men and women about the importance of safe sexual practice. I commend National’s Judith Collins for being direct in her speech to the House, during the Committee stage, about the importance of addressing this issue. Ignorance is not bliss when dealing with sexually transmitted infections and the health consequences. In our war against cervical cancer we need to send out clear and unmistakable messages about the risks of casual unprotected sex, so that we are not relying exclusively on the screening programme to reduce cancer incidence. Unlike Ms Collins, however, I do not think that the inclusion of the Kaitiaki provisions in this bill means that Māori women will somehow be prevented from having communicated to them the message on prevention. That provision stops data on Māori women being used in some aggregate way for purposes other than for what it was collected, because no identifiable group wants that to be the case.

This bill has been developed to correct the systemic problems highlighted by the Gisborne inquiry, and to streamline and clarify for all New Zealanders how the National Cervical Screening Programme works, what the intentions of the programme are, and to make it easier to review the safety and effectiveness of the programme. United Future is very happy to support the passage of this bill, understanding that screening programmes require a different set of ethics and standards than diagnostic services. Screening programmes invite an otherwise healthy population to participate in procedures that include a level of discomfort, and therefore the balance must be struck between benefits and cost to the participants. The programme is completely reliant on large numbers of enrolments for its safety and success. With this in mind, I challenge those involved in the promotion of better health outcomes for women to rally behind this screening programme for the good of those they claim to serve.

I rise to support the third reading of the Health (National Cervical Screening Programme) Amendment Bill. I do so as someone who was personally affected by what happened in Gisborne, which resulted in the inquiry into the under-reporting of cervical cancer. I do know the distress of receiving the letter that tells a woman that although she had been told she had a clean bill of health, she could not necessarily depend on that evaluation. I said I received a letter. In fact, I actually found out via the front page of the Dominion. There were such problems in tracking me down, because at the time I was studying, flatting, and moving around a lot, that in fact the Dominion found out before I did. For me, that has really highlighted the problem of a scheme where one would be required to track down every woman and get her permission to have access to those files. I know how difficult it is sometimes to track down people, particularly young women.

I think it is extremely important to get young women on to this scheme, not just to ensure that they are free from cervical cancer but also to use that as an opportunity for general practitioners to give them information about what causes cervical cancer, and what kinds of things can be a factor in raising a woman’s chances of contracting cervical cancer, particularly sexually transmitted diseases such as HPV, which we know are intricately linked to incidences of cervical cancer.

I support the scheme we have here. We owe it to the women of Gisborne to have as robust a scheme as possible, and only a scheme that is opt-off will provide that. Time and resources are far better spent on ensuring that we lower the risks and incidence of cervical cancer in New Zealand, rather than in tracking down women.

It has been very interesting listening to the reasoned debate in the Chamber and I must reiterate some of the comments made by other members of the House that there was a great deal of cooperation through the select committee on this bill, and post the select committee, to get the bill agreed to by our various caucuses. It has been a very good bill to be involved with.

I will address some of the issues that were raised by the Green member Sue Kedgley. Having worked with Ms Kedgley on the bill, I know that she is genuinely concerned and has raised those points regarding privacy. This is an issue that we all take very dearly. None of us particularly want our medical records known to all and sundry, although some of us probably have less to worry about than others. But, basically, nobody wants to have his or her private medical information trotted around the place.

I have a few issues that I want to take up. One of the points made by Ms Kedgley was in relation to the fact that the evaluators or auditors have access to the primary health records of people. Actually, lots of people have access to primary health records, including receptionists in doctors’ surgeries, anyone who may work there, anyone who wants to break in, Accident Compensation evaluators, and all sorts of people. The fact is that the health system cannot work if medical people cannot have access to people’s records. I am sure that when most of us ring our general practitioner to make an appointment to see him or her we would say what our name is and the receptionist will get our medical records out and have them ready for the doctor to look out. The receptionist might even open them up. The fact is that that can happen even now. However, should that person take that information and use it in a way contrary to its purpose, that person would be in breach of the law, as he or she would be, and will be, under this bill when it becomes an Act. The misuse of the private information will be just as bad and just as unlawful as it is now. The point we need to get through is that, no matter what system we put in place, if somebody wishes to break the law, get that private medical information, and misuse it, then they jolly well will. They will do it. Our only recourse will be to the law, as it is now.

I came to the conclusion that we should support this bill—having first been very concerned about the privacy issues. This bill will mean that the women of New Zealand who are on the National Cervical Screening Programme can be assured that they will have auditors and evaluators who will be checking their records against the facts. They will be checking that when women are told their cervical screen has come out with a negative—which is a good result—they will be able to rely on it. What can be worse than a cervical cancer screening programme that women endure—I say that from experience—and are told there is a negative result, therefore they all breathe easy and think: “Goodness, for how many years can I put it off again?”, only to find out that the results they have been given are wrong? That is what has happened in Gisborne. That is why we have to do something to help to stop this.

The women of New Zealand deserve to know, as do the men of New Zealand, that when they are told their medical results are X, that they are in fact X, and not Y. Otherwise we will have no faith in the system, and women will not even want to be bothered having their cervical screens. They will say they cannot see the point, because they think they will be given the wrong result. That is what has happened for some women.

Ms Kedgley has brought up another issue that I would like to deal with. That is the issue of opting off the programme. It is very important to make it clear that when a woman says she wants to opt off the programme—that she does not want to be part of the National Cervical Screening Programme—that does not mean she will not be able to have cervical smear tests. She will still be able to have the tests; she will still get her results. What will happen is that she will not have those tests evaluated against other people’s tests, and she will have to work with her own general practitioner or gynaecologist over those issues. For instance, her general practitioner, her gynaecologist, or herself, will decide when there needs to be another smear test. There will not be a letter from the programme organisers, the Ministry of Health.

The opting-off has nothing to do with saying that women will not, therefore, be able to have their smear tests. It is simply that they will not be part of the national call-up programme, and they will not be part of the national auditing programme. We need to get it very, very clear that we do not want women to opt off, but those who do wish to opt off—I absolutely respect their right to do so, and every woman should have that right—need to know that they, therefore, have to take more responsibility for their own health. That has to be understood. I think some of the concerns that Ms Kedgley raised are certainly valid, but she may have possibly overstated the case just a bit.

One of the other areas I want to talk about, again, is education. I would like to thank the previous speaker, Judy Turner, for her kind comments on this issue. It really is true that the air of secrecy and lack of information that absolutely envelops this whole area is because of the fact that sexually transmitted disease is one of the primary causes—and certainly, according to some submissions that we heard—the main cause of cervical cancer. That is not to say this is a judgment on women who get cervical cancer. It is incredibly easy to get. It is something men need to know about, too, because of their being carriers. That is what happens. It is very important.

I would love to see a bit of effort put in by the Government—I would certainly be very supportive of it—into educating people. I think back to the tremendous amount of effort that was put into education on the smoke-free environments legislation on our television screens, all night, every night. I think it would be great to see a bit of education around this area—whether or not there is a television programme, or whatever; people who want to do some documentaries on it. That would be great. The fact is that it is not a subject that everyone wants to know about or think about; they would rather just not think about it But it does not go away just because we do not want to know what causes it and what can be done.

That brings me to the kaitiaki regulations. These are a travesty for Māori women. The kaitiaki regulations are there, supposedly for the benefit of Māori women, but this is a dreadful trap that somehow we have allowed to happen. We have allowed Māori women not to have the same benefits, I believe, as others. It is just not fair when records regarding Māori cervical cancer health are kept secret, and are not allowed to be told. Māori women need to know the facts, as much as anyone else—particularly when we were assured or, rather, frightened in the select committee by the fact that Māori women are up to four to five times more likely to have cervical cancer than non-Māori women. It is something we need to look at, and I would really like the Government to look at it. I would certainly be very supportive of that.