Health (Screening Programmes) Amendment Bill

When I was first speaking in this debate some weeks ago I referred to the fact that cervical cancer is one of the most preventable of all cancers, but that as a nation we do need to reduce the number of women who die each year as a result of cervical cancer. I talked about how the screening programme was not a 100 percent accurate diagnostic programme, and, in fact, that it was heavily reliant upon the role of evaluators to keep the programme safe and reliable for all New Zealand women. So who are these essential evaluators? They are fully qualified health professionals who are subject to all the constraints and requirements of other health professionals. They are, in reality, the second opinion that can double-check the records of those most at risk, to ensure their safety.

I am hugely concerned about the alarmist communication regarding the privacy of primary-health records. Women’s health advocates would be more credible if they fully investigated exactly what is proposed in this regard before scaremongering. General practitioner records are already audited without the permission of patients as part of the professional review process of general practitioners. The evaluators of this programme will be health professionals who can be disciplined by their own disciplinary board if information is misused. Of the tens of thousands of women on the programme, several hundred may be uplifted for evaluation purposes. I have been told that there is something like a 0.03 percent chance of having one’s files checked if one has no abnormality on one’s smear, and a slightly higher chance if abnormalities are present. So the choice is between privacy and health safety, and I urge those contributing to the debate to be wise about being alarmist and possibly contributing to the failure of this programme, which is absolutely essential to the health outcomes of New Zealand women.

The Health Committee weighed this issue extremely carefully. Even in the last little while cross-party meetings have been facilitated by the Minister to get last-minute concerns addressed. Such actions have demonstrated a commitment to make this legislation work, and to ensure that women’s lives are saved from this very treatable disease.

In conclusion, I commend all my colleagues on the select committee for working so well and in a truly parliamentary way on this vital screening programme. In that regard I specifically mention the chair Steve Chadwick, Dr Lynda Scott, and Heather Roy, who bring essential experience as health professionals. They have been extremely solutions-focused. I commend the bill to the House.

The Health (Screening Programmes) Amendment Bill was originally intended to apply to all screening programmes. In this country there has been a lot a controversy about the national cervical-screening programme, but that controversy belies the fact that the screening programme has markedly reduced the death rate from cervical cancer in this country. A few years ago, five people died per 100,000, and now it is 3.9 percent. So we have reduced mortality. I will explain what happens with cervical screening. When a woman has her first cervical smear, or Pap smear, she is enrolled in the programme. It is called an opt-off programme because women do not get consent at the beginning to opt on to the programme. The woman receives a huge amount of information and can choose to opt off. If she stays on the programme she will get automatic recalls. Then her information is stored on a database. Her slides become part of the programme, and if that woman develops cancer, there is a need for a retrospective audit to determine the process that occurred and whether the screening programme is actually working effectively.

In Gisborne, we became aware of under-reporting of cervical cancer by one person who was doing some reading of pathology slides. The McGoogan report on the under-reporting of cervical smear abnormalities in Gisborne made very clear what needed to happen to achieve a gold standard system for a screening programme. But this is where we experience a problem, because this bill has now been limited to dealing with cervical cancer and just the cervical-screening programme, not all other programmes. We have a situation whereby women in this country have a real concern about their privacy and the privacy of their data. That concern generates from a past history in this country of lack of informed consent. That arose from the Cartwright inquiry into the practices of Herbert Green in Auckland, whereby women were randomised to either have treatment for their cervical cancer or not to have treatment, but they were never asked. It was never recognised that he was doing an actual study and that he was differentiating between two groups. Because of the Cartwright inquiry, there is a very strong feeling amongst women in this country that their personal information and their right to consent and privacy need to be respected. That is an issue of debate in terms of this bill.

Members will have heard speakers from National talking about their concerns that the Health Committee has recommended that there be access to primary-care records. Judy Turner mentioned that the committee has been having ongoing cross-party talks on this matter because we want to get it right. Everybody in the House—this is not a political issue—wants to get this screening programme right, and I am absolutely dedicated to that. We have had these discussions, and I have to say right now that National will support the second reading but with reservations. We want to see amendments in the Committee stage. If we do not see those amendments, then we reserve our right to not vote for this bill at the Committee stage and not vote for it at the third reading. We are waiting to see the Supplementary Order Paper, and we will have ongoing discussions about what needs to happen.

The select committee has said that in order for a screening programme to do an appropriate audit, it must be able to not only look back on hospital files but also look at primary-care records. However, the concern is that when auditors are flicking through primary-care records they will see a whole lot of other confidential information that is a matter between a general practitioner and his or her patient. We have been having some discussions about that issue. There is a means of dealing with that, whereby a general practitioner will supervise any access to those records. The New Zealand Medical Association is happy with this change. That means that general practitioners can limit the auditors to looking at just the information they need, because there must be adequacy of privacy for that information. So that is one aspect we have discussed and we want to see that change in the Supplementary Order Paper.

We also want the one million New Zealand women on the screening programme to be provided with information about what will happen as a result of the changes that have been made to the legislation. They must be told that the personal information in their primary-care records will now be able to be accessed. If they wish to opt off the programme at that point they must be told there is a clear process by which they can do that. We know that some women will opt off, because they will not want anyone else to have access to their primary-care records. But we have great hope that those women will have confidence in the programme, confidence that the medical practitioners will supervise any access, confidence that the evaluators will not have the ability to just randomly look at any information, and confidence that they will use that information only for the purposes of evaluation and audit. That assurance is needed for an appropriate screening programme.

Although this bill is limited to cervical screening, we hope it will be a template for the development of other public health legislation for screening programmes, like mammography, which is currently an opt-on programme. We will then have better uptake of that programme and will be able to save the lives of more women in this country.

In the select committee we looked at the factors involved in setting up and running a screening programme. We looked at the laboratories. They are audited and credentialed, and that is something we had to have. We did not have that back in the early 1990s. We know that looking for abnormal cells down a microscope is not an exact science, and that is the problem. People sometimes think that it is just so obvious, but looking for abnormal cells is like looking for a needle in a haystack. It is extremely important that we know there will be competency in those who are taking the smears and those who are reading them. Laboratories now have to look at a certain number of smears in order to keep up their competency each year. We hope the demands and requirements of private laboratories in this country are also applied to public hospitals. I have been hearing a few disturbing scenarios lately that exemptions are being made for public hospitals but not for private ones. If this turns out to be the case, it is not acceptable. Public and private hospitals have to have the same standard of quality assurance and competence. The ability of laboratories to be able to do a good job is also essential.

The Health (Cervical Screening (Kaitiaki) Regulations are going to stay the same as they were. That is one of the plans. There was quite a lot of debate about the fact that information relating to Māori women can be used. It can be used, as long as it goes through the committee that has been set up to govern the release of that information and how it will be used.

We heard from people like Professor David Skegg, and he was very keen that we get a gold standard system; that the quality assurance programmes will actually deliver the best possible screening programme for New Zealand women. We had discussions with the Minister of Health. Originally she had wanted to have access to primary-care records. After the release of a discussion document, a lot of submissions came in and it was clear that many, many women did not want that. Therefore, this has been a very debated and contentious issue.

As I have said, National does want to see changes during the Committee stage. We want those commitments put down in a Supplementary Order Paper, and in writing, and we reserve our right at that time to change our vote if we are not satisfied with those amendments. But tonight we will be supporting the second reading.

I rise to thank the previous speaker for her voice of reason that was incredibly important to have around the table when the Health Committee listened to expert advice and ministry advice, and also all the submissions on this bill. I would also like to thank Judy Turner and Heather Roy who put a different perspective into this bill. All of us had one shared concern, and that is to develop very robust cervical-screening legislation. I think we have run into a few problems since—

The ASSISTANT SPEAKER (H V Ross Robertson): I am sorry to interrupt the honourable member. It has just been drawn to my attention that the member has already spoken on this piece of legislation, and is therefore unable to do so on this occasion.