Health (National Cervical Screening Programme) Amendment Bill

The House is in committee now on the Health (National Cervical Screening Programme) Amendment Bill. The question is that clause 1 stand part.

Point of order. I seek leave for all provisions to be taken as one debate.

Leave is sought for that purpose. Is there any objection?

A point of order, Madam Chair. Just clarifying that we wish to have an opportunity to debate the Government’s Supplementary Order Paper (SOP) separately to the main amendment bill.

The point of order by Simon Court to debate just the SOP is actually not possible. We either do the debate clause by clause or we take the whole debate as one clause and you can debate the Government’s SOP as part of clause 6.

Point of order. On the basis of that clarification, and the reassurance given to the member, I seek leave for all provisions to be taken as one debate.

Leave is sought for that purpose. Is there any objection? There is no objection, so we will take the debate as one. The question is that clauses 1 to 9 stand part.

The proposals tonight in front of us are about the modernisation of our National Cervical Screening Programme. The Government has started this excellent work to support women’s health. Through Budget 2021, we have funded the roll-out of a new cervical screening register and also the implementation of a new PCR HPV test. But in order to get the benefits of this, we also need to update our legislation. So let’s reorientate ourselves to this rather technical bill.

The original bill enables a modern information technology register, which was not anticipated when the cervical screening programme was first designed. It allows direct look-up access, which currently is not possible for providers in the cervical screening programme. So, for example, if a new woman presents to your clinic, her screening history is unavailable to that doctor or nurse and they have to obtain by fax a summary of the screening history. This introduces delays. It is itself risky, because faxes just are, and we want to replace it with a modern system, a modern system that would cut down on the number of visits that would be required in these types of situations, but also one that would potentially enable screening in new settings. So, for example, having this type of access would enable different types of community providers acting outside of standard clinic situations.

That’s the underlying bill. The select committee—and I thank them for their work—recommended four changes. First is a change to the definition of “diagnostic test screening and specimen”, which is a very helpful change to make it clear to enable the change to HPV testing. It recommends more specific language around the disclosure of information, which is also helpful. And there is a change for consistency in the kaitiaki regulations. These were all canvassed at the second reading.

The fourth change recommended by the committee was a new clause 6A, or section 112ZE of the principal Act. Our view is that clause 6A would be impractical, and it captures many day-to-day activities that were not intended to be captured by the select committee’s changes. So our Supplementary Order Paper addresses that and makes much more workable changes that could be implemented while protecting the overall intent, which is that the kaitiaki group should review information of consequence to wāhine Māori.

So that’s a summary of the changes, and I look forward to members’ questions.

Thank you. I just want a brief call. I’d like to just focus on clause 4 and 5 and just ask the Minister to comment on the impact she thinks that expanding the definition of a screening test and broadening the purpose of the Act will have in terms of reducing inequalities in cervical cancer and also futureproofing the screening programme.

I think just thinking through these stories that we’ve heard in previous debates around smear takers having to wait for a fax to come through to get information from the screening programme. So just the impact of that narrow group of people that currently, under the Act, are allowed to access information which is reasonably restricted to those operating the programme and also appointed screening programme evaluators. I think looking at what clause 4 is doing in terms of broadening that, so that we’ve got those providing cervical screening services, assessment and treatment services, and researchers who are authorised, broadening that, because we’ve also heard stories about people who are working to follow up people who are late for their smears. And again, if they’ve got unduly restricted access to information, the impacts of having to then wait for something to get faxed through by somebody in daytime hours if they’re working after hours, the complexities around that.

Also looking at clause 5, where what we’re doing is we’re actually broadening the definition of a screening test to include things like high-risk HPV testing and also cervical or vaginal cytology. So just really thinking through the impact that will have in terms of futureproofing the screening programme so that we can have and use those more up-to-date tests and looking at what that will do in terms of making sure that we can follow up those who are late for their smear tests, and secondly thinking through how we have reductions in inequalities in terms of cervical screening. So just talking through those points. Thank you, Madam Chair.

I thank the member for her question. So clause 4 is to allow a wider range of health providers to access the register, which enables providers in the course of their clinical work to look up the register, rather than having to obtain, essentially, a clinical history sent by fax. And that enables much more timely access to that information. That means that people aren’t sent away.

The member’s specific question was about equity, and that is an issue. We know that there are people facing social disadvantage from low incomes who struggle to get to a provider, and there are many barriers to getting a provider, and that asking them to go away and then come back actually just magnifies that barrier. So that’s one of the things.

Then clause 5 specifically broadens the classes of specimens that might be referred to in the Act and is part of enabling the collection of the HPV sample rather than the traditional cervical smear that has been used up until that time. And that enables equity because it is a much less invasive procedure. It does not require another person to do a speculum exam; it can be done by a swab. It is therefore a more acceptable procedure, and we know that from studies done here in New Zealand by researchers engaging with Māori and other communities to assess what their experience has been. And then, ultimately, it is possible that by implementing the HPV test, women will be able to collect their own samples. That means that the barrier of even coming in for a smear may eventually be removed altogether. It may be that swabs could be posted out to women who are in remote locations, and they could be instructed in how to collect their own sample. So all of those potential actions are made possible by the fact that we have a wider range of samples that could be used, including the HPV test.

Kia ora koutou. I want to speak to clause 5, amending section 112B(2), and the definition of what is a cervical screening service. As currently stated, it means “any service provided for the purpose of providing cervical screening, assessment, and treatment services in relation to a particular woman as part of the NCSP”. So I would love to make the language in this whole bill more inclusive to acknowledge that cervical cancer does not just affect cisgender women, because the problem with the definition in here, as being only for women, is that it actively excludes takatāpui, trans men, intersex, and non-binary people who have a cervix and a vagina.

When I spoke in the House about this last week, I mentioned the concerns that had already been raised to me about the privacy of the information, such as the incorrect use of pronouns by people in screening services, the use of former or dead names—

💬 Hon Member: It’s probably not going to kill them, though, is it?

—I’ll get to that, thank you—and invasive questions about their genitalia and gender identity or expression.

After that night, I was advised by members of those communities that if they were not recorded as a woman in the health system, some trans men, intersex, and non-binary people were not allowed on this screening programme. So these are examples of institutional discrimination against members of rainbow communities because somebody shouldn’t have to choose between misgendering themselves in our health system or not getting access to potentially lifesaving healthcare. I think that’s shameful in this day and age. So my questions to you here, then: how will you ensure that the National Cervical Screening Programme is available to all people with a cervix and a vagina? And how will you preserve the privacy and dignity of takatāpui, trans men, intersex, and non-binary people who should have the right to use it?

Thank you, Madam Chair. It’s always an honour to contribute in the House. My question to the Minister is really about the kaitiaki regulations. In the Minister’s speech, she identified there were some changes to the kaitiaki regulations, but I remember from select committee that the submission by the Māori Women’s Welfare League had made recommendations into making sure that the data collected for Māori women on cervical screening needed to be kept sacred, just like when they refer to the whare tangata or the whenua of, of course, the womb, the uterus.

So I note that the Minister had said in her speech that the fourth change or recommendation by the Health Committee will introduce a new clause 6A to the bill, that the clause provides a new subsection 112ZE(1) of the principal Act—does not override the requirements for the kaitiaki regulations. What I would like from the Minister is if she can explain what the changes are to the kaitiaki regulations, because, from memory, from submitters, there were, I would say, concerns that the ministry were not following the regulations, the kaitiaki regulations.

My concern is that we are adhering to the kaitiaki regulations, and if the Minister can make clear what the changes are so that we understand what those changes are to the kaitiaki regulations. So that was on the fourth point on the Minister’s speech on the second reading of this bill, that the kaitiaki regulations provide the National Kaitiaki Group and gives the group the role of protecting the use of information on or from the register that identifies participants as Māori. If there are changes, I’m not quite clear on it, but it would be great if the Minister gave us what that is tonight. Thank you.

Thank you, and I thank my colleague for that contribution. So, indeed, the kaitiaki regulations are regulations intended to protect the tapu nature of data about cervical screening for Māori women, and the National Kaitiaki Group and its functions are preserved in the bill and the Supplementary Order Paper.

What has changed here is that the Health Committee proposed one particular way of addressing that, and we have tried to keep the intent of the select committee, while trying to make it a workable solution. So the concern was—and an independent group was brought in to review the proposed changes to the scope of the kaitiaki group’s work—it would have probably generated several hundred referrals to the kaitiaki group a year. That would include things such as ordinary data updates of the register and just some of the information that was needed on a day-to-day basis for the quality assurance of the system, because, clearly, it is important that we have good data, good reports, and good statistics—and to do all of that, the employees of the programme need to be able to look up in the register and work with the data.

What is preserved is that the kaitiaki group would be required to approve data being published externally on these issues—so that includes the screening programme’s annual reports; monitoring reports; cancer case reviews; Parliamentary Committee reports; any public-facing component of an electronic application, not that we have that at present; and other publication captured by the legislation.

Also, we think that the number of issues referred to the kaitiaki group will increase under this regime, above where it has been at present. I think it is also true—the member reflected the experience on select committee—that there have been disagreements about whether the ministry was meeting the expectations of the kaitiaki group, and that was probably, I’m advised, the result of ambiguous rules that were interpreted in different ways and led to distrust, perhaps, and disagreement. So I hope that by having gone through this independent process, by clarifying it here, everyone’s working to the same agreed set of standards and that this will build that trust back up.

Returning to the earlier question about the inclusiveness of the programme, yes, indeed, everyone with a cervix is eligible for screening and able to benefit from the screening and should have access to it. I think it is troubling, the sorts of situations that the member Elizabeth Kerekere mentioned. Certainly, I will undertake to make sure that the processes used by the screening programme are what we would expect, upholding the dignity of all people and the fact that they should be treated with respect in the screening programme, but, actually, under the Code of Health and Disability Services Consumers' Rights and all parts of the health system.

Thank you, Madam Chair. Can I just also acknowledge the Minister in charge of this amendment bill. As both a woman and a doctor, it’s certainly heartening for those of us who are women that you are leading this.

I just wanted to flesh out a little bit around the robustness of the platform referred to in subsection (5). Recent examples—particularly at Waikato DHB—of protected information and cyber and privacy breaches can cause concern within the public. So I just want the Minister, please, to be able to confirm that the IT component that will deal with this potential volume of electronic requests is in place and has been tested. The second part to my question is: when will this actually be rolled out? Thirdly, can you confirm that it has no relationship or dependency on the coronavirus vaccine IT platform with relation to problems in the past regarding the bowel-screening programme roll-out?

Just finally, can the Minister reassure New Zealand women, as I referred to in my preamble, that the private data is going to be safe in light of those recent cyber-attacks and breaches, and what watchdog—for want of a better word—might be overseeing that?

Thank you, Madam Chair. Thank you to the member for such important questions. The screening programme—in a sense, we’re going to set up an IT system that is equivalent to IT systems that are in use within DHBs, for example, or are within public health organisations, and, yes, there are some national ones as well. This would be one of those national ones.

So it is not at all unique that we are having a register that is an electronic register accessed nationally by healthcare providers—that’s not unique. What is unique about the cervical-screening programme is how specific its legislation is, and that’s how we’re in this positon. In terms of the specific question about the robustness of the security protections there, look, that’s a concern I totally share. The funding that was announced in Budget 2021 includes funding for a business case where we’ll develop a more detailed proposal on the particular shape of that IT platform and, indeed, other specifications of the privacy protections and security will be scrutinised heavily at that time.

There’s no commitment to a particular platform at this stage. The time line for implementation is two years from now, so it will be the business case and then developing the implementation plan. None the less, work is under way. We have this legislation in progress to enable those changes, and also the ministry has been developing its clinical guidelines on how the HPV test will be used. So it is not as if we have been standing still.

I’m interested to understand more of the member’s concerns about the bowel-screening programme. That is one particular platform that has been used for a number of different public health platforms, and it does appear to be performing well, because the same IT system that underpins the bowel-screening programme is the basis of our contact-tracing IT system, and I think that it’s also been repurposed for one other public health programme.

Certainly, we’ve had now a series of IT builds within the ministry. They seem to have progressed quickly, and the ones that I’ve seen developed in my brief time here have been to a high standard. So I’d be interested to understand more of what concerns are, particularly about the bowel-screening one, and I’d also just note that there is a business case to come, with no commitment to a particular platform yet.

Thank you, Madam Chair. It is great to just take a call on this during the committee stage of the House on the Health (National Cervical Screening Programme) Amendment Bill.

Just first of all, in terms of the background to this bill, I never got a chance during the second reading, but I promised I would get to a question. This whole thing about strengthening and improving the National Cervical Screening Programme—I’m all for it, because, I mean, doing faxes nowadays is pretty old school right now. [Interruption] Do you have a fax? I mean, I get the electronic fax in my phone; I do have an eFax, so that’s an upgrade from the actual physical fax. It’s going to be quicker, it’s going to be convenient, it’s going to be more streamlined. The last thing you would want to do as a clinician is try and go through your faxes and the results when you’ve got the patient right there and you’re trying to take a test and treat the patient—it’s a bit of a headache to try to go through all those things.

The Government Supplementary Order Paper (SOP) that the Minister has put forward is great in order for our National Kaitiaki Group to continue to have the oversight of the use of Māori data. One particular thing in this bill, with the amendments, is that testing for HPV—being a male clinician in South Auckland, with a Māori-Pacific whānau, whether they be cultural, religious, conservative views, when I come out to the waiting room and call a person’s name, and I can see the lady’s face—yes, when they see me asking for them to come through down the hallway to the clinic room, I can already tell that they don’t want me to take the smear test. So having this HPV test is going to make a huge difference in order to get that access for our whānau. We already know about the lower rates of participation in the cervical screening programme with Māori, Pacific, Asian, and other vulnerable groups, so this helps to do away with that.

I’m going to look at the Māori data and the governance group which this SOP is speaking to. It is great to make sure that we talk about data sovereignty and making sure we protect data and only use it for its purposes and protect the health information of our people. So I get what the SOP is trying to do and I support that.

The other thing I would say with the two amendments here is that it’s going to make a huge difference, across the board, for our whānau. But my question to the Minister, specifically for a Pacific whānau, with these provisions, is: what do you think that is going to do for our Pacific whānau, especially where I come from in South Auckland? And my wife’s a Māori female from Ngāpuhi and Ngāti Whātua. She works for a Māori provider in South Auckland. She would always make sure that anything that we do is aligned with the Treaty of Waitangi. So what are your thoughts and would these provisions align with that, Minister?

So those are the two things that I would like to ask the Minister, and, again, I’m going back to the background of the bill—I totally support it because, again, I don’t know whether Dr Gaurav would have the same issue getting smear tests done with our female population, but it is a barrier for us, and I’m trying to go through our health targets, especially under the primary health organisation—if we see on the dashboard, “You haven’t met your target.”, and if you have so many males in your clinic, it’s a huge issue. I got taught from one of the senior Māori clinicians going through medical school that we are supposed to be asexual, meaning that you’re not a male doctor, you’re not a female doctor—you are there to treat the patient in whatever capacity. But, again, I acknowledge that it is a hard task when you come from a Pacific, conservative, or religious area, where that’s going to be a huge barrier for us. So those are my two questions to the Minister. Thank you.

I thank my colleague for those questions. So the Treaty partnership, I guess, is reflected ultimately in the kaitiaki regulations, which do give Māori control of wāhine Māori data. The underlying cervical screening legislation has been in place for over 20 years now and probably reflects the first such provision in New Zealand law to give control of a particular piece of health data to Māori. I think more generally these issues are being faced across the health system and you’ll be aware of the conversations around Māori data sovereignty which are wider. Through addressing those, we hope that Māori providers will not just have control of the data but be able to benefit from the data, develop services to serve their community from the data so that the relationship is not one where they provide services directed by the Government but can propose and advocate for and seek to find the needs in their community and work towards achieving them.

On the Pasifika front, I mean that’s lovely advice the member was given about medical practitioners should be seen as asexual, but we are all embodied people and the first thing someone sees when they look at us is they’re sizing us up to see whether they can trust us with their deepest secrets and concerns. Something like cervical screening is for some people surrounded by shame, by different cultural values, and in some cases by trauma as well. Essentially, what the technology of HPV screening does is give the control of the process to the person who is being screened and screening is not something that is done to the person. The person can do it themselves eventually, when we have self-screening in place. I probably defer to the member as a Pasifika practitioner, but essentially it allows a whole lot more flexibility and the tailoring of how the screening programme works to different communities.

The second thing is that we hope it will cost a lot less. I know that is a barrier of concern to the Pacific community. Often it’s hard to get to the doctor and sometimes there’s also a cost associated with cervical screening, so we hope those barriers will be addressed too.

I will report progress on this bill.

House resumed.

Mr Speaker, the committee has considered the Health (National Cervical Screening Programme) Amendment Bill and reports progress.

The question is that the report be adopted.

Motion agreed to.

Report adopted.

The House adjourned at 9.59 p.m.