What we owe our pets

What we owe our pets

I recently complained about a vet promoting quackery in the Bay of Plenty Times. In response to my complaint, the editor agreed to publish a response I wrote, regarding what we owe our pets. Now that it’s been up for a little while, I’m also publishing it here on my blog.


The Bay of Plenty Times recently published an opinion piece by veterinarian Liza Schneider about avoiding and treating cat abscesses. Liza Schneider runs the Holistic Vets clinic in Tauranga, and is the president of a special interest group of New Zealand vets focused on “complementary veterinary medicine”.

At the end of her article, she said “complementary therapies like homeopathy, herbal medicine, ozonated gel, hyperbaric oxygen therapy and others can help aid healing tremendously.”

The claimed efficacy of homeopathy is in stark contrast with evidence-based practice. As the UK’s Royal Council of Veterinary Surgeons said in a statement last year, “Homeopathy exists without a recognised body of evidence for its use. Furthermore, it is not based on sound scientific principles.”

Like children, our pets rely on us to make healthcare choices for them. Just as pets cannot talk to us about their symptoms, they are unable to discuss treatment options, make an informed decision of their own, or consent to treatment. These important decisions are left to their carer, and their vet is the carer’s guide to making this decision.

When we welcome a pet into our homes, we take on a responsibility to care for them. When their health becomes an issue, they have no choice but to rely on us to make the best decision in their stead. We must be their advocate.

If we choose poorly, their health may suffer. In my view treatments like homeopathy, which are not supported by robust evidence, will at best cost you money and do nothing, but at worst they may delay effective treatment.

Though we are fully capable of making informed decisions about our own healthcare that might involve trying treatments that are not backed by good evidence, I strongly believe that we have a duty to our pets not to experiment on them in this way.

This responsibility also applies to veterinarians. When a vet says things that are not soundly based on scientific evidence, such as “homeopathy… can help healing tremendously”, I believe they are failing in that responsibility.

The New Zealand Veterinary Association has a policy on the use of “complementary and alternative treatments” that requires, among other things, that vets must say if a treatment they are advocating is not supported by evidence:

“Clients must be made aware of the likely effectiveness of a given treatment according to recognised peer-reviewed veterinary medical publications, notwithstanding the individual beliefs of the veterinarian. They must also be told the degree to which tests, treatments or remedies have been evaluated and the degree of certainty and predictability that exists about their efficacy and safety.”

I sincerely hope that your vet fulfils this responsibility in their practice.

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New rules for pharmacists

New rules for pharmacists

The Pharmacy Council has (finally) published their new Code of Ethics 2018.

I’ve written several times on the ongoing saga of the Pharmacy Council’s Code of Ethics. In late 2014 we put together a complaint at the Society for Science Based Healthcare arguing that their Code of Ethics 2011 had been violated by an Auckland pharmacy, in which a salesperson had recommended and sold a homeopathic product to someone who didn’t realise they were buying quackery.

Following this complaint, the Pharmacy Council decided they would not enforce the rule in their Code of Ethics at the time that prohibited pharmacies from purchasing or supplying any health product that was not backed by “credible evidence of efficacy”.

This led to two protracted consultation processes, first about that specific part of the code and then about rewriting the code entirely. I worked on the Society for Science Based Healthcare’s submissions during each consultation period, and we met with the Pharmacy Council twice to discuss the topic.

The consultation processes also saw well-voiced support for strong patient protection rules coming from the New Zealand Medical Council and the Pharmaceutical Society (who represent professional pharmacists). Whereas the Pharmacy Guild (who represent pharmacy owners) was in favour of the more relaxed rules that had been suggested. For more detail on this, you can read my submissions roundup from 2015.

The Code of Ethics 2018 will come into force on the 12th of March 2018. It’s principle-driven, and accompanied by a number of guidelines that go into more detail on what’s expected of pharmacists in various areas. One of these guidelines is the Pharmacy Council Complementary and Alternative Medicines – Statement and Protocol for Pharmacists.

Unlike the Code of Ethics 2011, the new rules don’t prohibit pharmacists from selling quackery. While this is unfortunate, it’s seemed clear from the outset that the Pharmacy Council had no intention to keep this rule given they aren’t prepared to enforce it. Instead, there has been an increased focus on ensuring patients are given the opportunity to make an informed choice.

I’m feeling cautiously optimistic about the change. Though ideally pharmacists shouldn’t be lending their credibility to ineffective health products, if pharmacists must be allowed to sell quackery then I think the next best approach to regulation is to protect patients’ rights to make an informed decision.

On the face of it, I think the new rules seem good. But enforcement has been a concern in the past and parts of the previous code were widely disregarded. Come the 12th of March, I plan to have a look for pharmacists who aren’t complying with the new rules and lodge complaints to see how they are treated, and if the behaviour is corrected. Unfortunately, there are a few pharmacies in New Zealand that have a history of promoting quackery, including by selling ineffective health products online, which seems like a good place to start.

I’d recommend you read the rules for yourself if you’re interested, but here’s my summary of what I think are the most important new patient protection rules regarding informed consent:

[Principle 1H: A pharmacist] Before recommending, supplying or promoting a medicine, complementary and/or alternative medicine or other healthcare product or service, considers available evidence, and only supplies a product when satisfied that it is appropriate, and the person understands how to use it correctly and safely.

[Principle 4C: A pharmacist] Provides accurate, truthful, relevant, and independent information in an appropriate form that is not misleading to patients, the public and/or other healthcare professionals.

[Principle 4H: A pharmacist] Ensures that when providing any medicine, complementary and alternative medicine, or other healthcare product or service, that the health and wellbeing of the patient or consumer is the primary consideration, and that the benefit of use outweighs the risk.

[Principle 4I: A pharmacist] Does not engage in advertising, promotion or supply of goods or services that could include misleading or unsubstantiated claims, and/ or undermine public trust in the profession.

[Principle 6A: A pharmacist] Maintains contemporary knowledge of evidence-based practice.

Where it makes sense, all of these principles are effectively extended to non-pharmacist salespeople who work in pharmacies via Principle 5G:

[A pharmacist] Is responsible for actions of staff under their supervision.

Looking at the associated guideline on “complementary and alternative medicines”, the requirements in parts 14 and 15 seem like they will be particularly important for protecting patients from quackery in pharmacies:

14. When supplying products or information about treatments/products/services that have no current evidence of proven efficacy pharmacists are expected to:

a. ensure that patients are informed about the degree to which treatments or products have been evaluated, and

b. the degree of certainty and predictability that exists about their efficacy and safety

15. Pharmacists must advise patients when scientific support for treatment is lacking.

Part 18 of the guidelines also includes the following requirements:

e. provide sufficient information regarding the CM/NHP [Complementary Medicine/Natural Health Product] to allow patients to make informed choices

f. not misrepresent information or opinion. Patients must be made aware of the likely effectiveness of a given therapy according to recognised peer-reviewed medical publications, in spite of your personal beliefs

g. provide the patient with a timeframe for accessing conventional medicine if their condition is unresolved or there is no improvement

Time will tell if these rules really do enhance patient protection in the pharmacy industry, which has a long-standing problem with promoting quackery on the side.

From the 12th of March onwards, if you see behaviour that you think is non-compliant with the code feel free to let me know about it. I can be contacted via email at mark@honestuniverse.com.

OIA accessibility follow-up

OIA accessibility follow-up

What will be done about the Official Information Act’s accessibility problem?

Late last year, I published an open letter on the accessibility of the Official Information Act. I gave examples of inaccessible responses to requests under the OIA, and suggested a solution. I sent this letter to the Ombudsman, and later also forwarded it to Associate Minister of State Services (Open Government) Clare Curran and to Minister for Disability Issues Carmel Sepuloni.

I’ve now heard back from the latter two, and want to share their responses so others interested in this topic can read what’s being done to address it.

I’d also lodged an OIA request with the Ministry of Defence last year, as their Briefing to Incoming Minister document was released as a text-based PDF with watermarks and redaction. I’d asked them what software they used to produce this, and the associated costs, so I’d be able to give a specific recommendation to agencies who send me inaccessible responses in the future.

I’ve received a response to this request as well. As with the responses from Clare Curran and Carmel Sepuloni, you can find the text and PDF link to this response below.

Unfortunately, and somewhat ironically, all three responses were received in the form of image-based PDFs of documents that had been printed, signed, and then scanned. This is the primary accessibility issue I’d raised in my letter regarding OIA responses, as this format cannot be easily converted to text and is inaccessible to people who rely on screen readers. A couple of the responses also contained links that I’ve had to type out by hand instead, due to this inaccessible format. I’ve made the original PDFs available, and also converted them to text (by hand, so please assume any mistakes are mine), which you can find below:


Response from Clare Curran, Associate Minister of State Services (Open Government). Original PDF

Dear Mark Hanna

OIA Accessibility

Thank you for your email on 30 November 2017, regarding the accessibility of information released to requesters under the Official Information Act 1982 (OIA). I note your concerns about the format some agencies choose to provide information in, which can render that information unsearchable by the recipient.

As you are aware, section 16(2) of the Official Information Act provides that information can be made available in a way preferred by the requester, unless there is good reason identified by the agency not to do this. In the first instance it is for the requester to ask the agency to make information, and in particular data sets available in a searchable format. If the agency refuses then this can be the subject of a complaint to the Ombudsman.

The State Services Commissioner has been delegated the functions under section 46 of the OIA by the Ministry of Justice. This function includes providing advice and guidance to agencies to act in accordance with the OIA. SSC has established an official information work programme which includes developing guidance for agencies. I think that the issues you have raised are worthy of further consideration.

I have asked the State Services Commission to consider whether accessibility of information should be part of the official information work programme that the Commission is undertaking.

Yours sincerely

Hon Clare Curran
Associate Minister of State Services (Open Government)


Response from Carmel Sepuloni, Minister for Disability Issues. Original PDF

Dear Mr Hanna

Thank you for your email dated 30 November 2017, regarding accessibility issues with Official Information Act (OIA) practices and across government more generally. The Government is committed to being open and transparent and we expect the same of the public service.

I have been advised that the Official and Parliamentary Information team within the Ministry of Social Development will soon utilise more sophisticated redaction software. This software will enable the Ministry of Social Development to send and publish OIA responses and documents that are text searchable and text recognisable for those requesters who use reading software.

Providing OIA responses in accessible formats should be standard practice as part of an open and transparent government. To this end, the Ministry of Social Development is leading a work programme to increase the accessibility of information and communications across government agencies. This will involve providing clear and practical advice to support government agencies to meet accessibility requirements for all their communications with the public. Participating Chief Executives have signed up to an Accessibility Statement to commit to this. You can find more information about this here: www.odi.govt.nz/nz-disability-strategy/outcome-5-accessibility/

Thank you for writing. I hope this information is helpful.

Ngā mihi

Hon Carmel Sepuloni
Minister for Disability Issues


Response from Ministry of Defence. Original PDF

Dear Mr Hanna

RESPONSE TO YOUR OFFICIAL INFORMATION REQUEST

Thank you for your email of 7 December 2017 regarding the software used to create the redacted and watermarked 2017 Briefing to the Incoming Minister of Defence, published on the Beehive website.

The Ministry of Defence recognises that publishing a document online as a text-searchable PDF file makes is easier to access. We prepare material for release in this form wherever possible, and endeavour to provide alternative formats on request for non-searchable documents, such as older files.

In order to produce searchable, redacted and watermarked files, the source documents are generally prepared using Microsoft Office software and then exported as searchable PDF files. Adobe Acrobat Professional software is then used to make redactions and add watermarks.

The Ministry has an agreement with the New Zealand Defence Force on software licensing. The Defence Force pays for an all-inclusive software bundle and is charged a flat rate. They distribute the licenses for Adobe Acrobat Professional as needed by staff. Please refer to the Adobe Acrobat website for costs: https://acrobat.adobe.com/nz/en/acrobat/pricing.html. The cost to agencies will be affected by volume. Assuming multiple licenses are purchased, the Adobe website indicated pricing of A$22.99 per seat per month (about NZ$25 at present exchange rates) or A$275.86 per year (about NZ$300).

Under section 28(3) of the Official Information Act 1982 you have the right to request the Ombudsman to investigate and review this response.

Yours sincerely

Helene Quilter
Secretary of Defence


It’s not clear yet whether or not accessibility of information will be part of the SSC’s official information work programme that Clare Curran mentioned. Though I’m hopeful that it will be, I’m not sure how likely this is to effect change.

I strongly agree with Carmel Sepuloni’s statement that “Providing OIA responses in accessible format should be standard practice as part of an open and transparent government”, and hope that she will do her best to ensure our government meets that standard. I’m cautiously optimistic, though the fact that this response itself was delivered in an inaccessible format isn’t encouraging.

For the foreseeable future, it sounds like the best course of action will be to ensure that all OIA requests specify that the response should be delivered in an accessible, searchable format. I have included this recommendation in the OIA Guide that I published last year.

If I receive inaccessible PDF responses in the future, I now intend to direct the agency to the Ministry of Defence’s response regarding the software they use.

Can you trust Band-Aids?

Can you trust Band-Aids?

Band-Aid is a household name, but can you trust the way they’re promoted?

For years Johnson & Johnson, the manufacturers of Band-Aid adhesive bandages, have been making a simple claim about them. If you put a Band-Aid on a cut, it will heal faster than it would have if left uncovered.

Specifically, they say it will heal twice as fast:

Band-Aid packaging, front and back.

Johnson & Johnson is a large, well-known medical company. As well as Band-Aids, they make many other health and health adjacent products such as shampoo for babies, cold medicines, and mouthwash. For better or for worse, this means many of us are willing to accept their claims at face value.

In an ideal world, that would be fine. They don’t have a reputation for being misleading, like the reputation Reckitt Benckiser has earned for its misleading claims about Nurofen. They’re also not selling products that are clearly dodgy, like homeopathy or a quantum magnetic health analyser.

If all of us took the time to look into every health claim we encountered, we’d have no time left to eat or sleep. So, in cases like this, we often feel satisfied that if such a big company were making a dodgy claim someone would have caught it and called them out.

Well, that’s exactly what happened in this case. In early 2017, Dr Ken Harvey contacted Johnson & Johnson to ask them to provide the evidence for the “heals cuts twice as fast” claim they were making. In response, Johnson & Johnson did not send him the evidence. Instead, they opted to remove the claims.

“I gently asked them where was the evidence, it’s a fairly strong claim,” Dr Harvey told Fairfax. “And they hummed and hawed and eventually decided, I got a lovely letter from them, saying there was evidence – but they are removing the claims.”

Band-Aid promotions to be ripped off the shelf after complaints about healing claims | The Age

I was alerted to this by a member of the Australian patient advocacy group Friends of Science in Medicine*, which has similar aims to the New Zealand Society for Science Based Healthcare that I chair.

At the Society for Science Based Healthcare, we decided we wanted to make sure that the same change would be reflected over here. So, in April 2017, I wrote to Johnson & Johnson:

Kia ora,

I saw the other day that Johnson & Johnson will be removing promotional material in Australia saying Band-Aids are “clinically proven to heal wounds faster”. http://www.theage.com.au/national/health/bandaid-promotions-to-be-ripped-off-the-shelf-after-complaints-about-healing-claims-20170413-gvk985.html

Similar promotional material for Band-Aids exists in New Zealand. Does Johnson & Johnson also plan to remove these? For example, these online ads for various Band-Aid products all say they can make cuts heal twice as fast as if they were uncovered, and it looks like the same claim is made on the packaging too:

If Johnson & Johnson does not plan to remove these ads, will they be willing to publish the evidence alluded to in the statement provided to Australian media?

Sincerely,

Mark Hanna
Chair, Society for Science Based Healthcare

A couple of weeks later – after their Director of Regulatory Affairs for Australia, New Zealand, and Japan had returned from leave – I received this response:

Dear Mr Hanna,

Re: Band-Aid® Brand Adhesive Bandages

I refer to your correspondence in relation to our Band-Aid® Brand Adhesive Bandages.

I can confirm that the product sold in New Zealand is the same as the product sold in Australia. Any changes that we make to our promotional and packaging material for Australia will, therefore, be reflected in the New Zealand market.

Thank you for your enquiry.

Yours sincerely,

Andrew Harris B.Sc(Hons) PhD
Director, Regulatory Affairs

Great, the claim on the packaging would be removed! A win for consumers, all done and dusted I guess. Except… all those examples I sent to them were text on a supplier’s website. Would their suppliers all be told of the change they should make to the way Band-Aids could be promoted? I asked:

Thanks Andrew, it’s good to have confirmation on this. I assume, then, that Johnson & Johnson will be contacting all of its New Zealand retailers to ensure they update their marketing materials for these products?

Sincerely,

Mark Hanna
Chair, Society for Science Based Healthcare

This time, I never heard back. Obviously I can’t say for sure, but in my opinion it’s likely that Johnson & Johnson never responded to that question because they had nothing else to tell me that wouldn’t make them look bad.

I don’t think they ever had any plans to contact their suppliers about removing this claim from promotional material that Johnson & Johnson didn’t have direct control over. I also don’t think they’ve contacted their suppliers about this in the months since they agreed to change their packaging.

In fact, if you check those example links I sent to them in April, you might find the “Heals cuts twice as fast” claim is still there. At the time of writing, that claim was still present at all three links.

But it’s not just their suppliers that are the problem. In early June, a couple of months after Johnson & Johnson agreed to stop claiming that Band-Aids can heal cuts twice as fast, Society for Science Based Healthcare member Daniel Ryan noticed that the claim was still made on over a dozen pages on the Band-Aid New Zealand website. He laid a complaint about this with the Advertising Standards Authority.

Unsurprisingly, his complaint was settled in July when Johnson & Johnson voluntarily removed the claims:

The Chair [of the Advertising Standards Complaints Board] acknoweldged the Advertiser’s response to the complaint confirming it had made changes to the website voluntarily and without admission, removing packaging images containing statements which were of concern.

ASA Complaint 17/185

Though Johnson & Johnson are clearly happy to be seen doing the right thing – removing claims that they are unwilling or unable to substantiate – it seems to me that they have also been very willing to ignore many places where these claims continue to be made, and to delay their removal through inaction.

It reminds me of Reckitt Benckiser’s behaviour in the case of the misleading claims they made about Nurofen specific pain products. Even though they were eventually forced to remove the claims (accompanied by a paltry fine, in their case), they still made a healthy profit in the meantime.

Perhaps more importantly, during the intervening time in which the claims remained, they were only further cemented as part of public knoweldge. So even though they’re no longer used, they’ll probably still come to mind when people are deciding whether or not to buy them:

“Band-Aids heal cuts twice as fast? Yeah, I’m sure I heard that somewhere.”

This is often what supposedly reputable health companies rely on. Even if they’re forced to remove misleading claims, people will still remember the old claims.

And if no one complains, nothing happens.

* I’m also a member of Friends of Science in Medicine (though not particularly active, since I focus my efforts on New Zealand issues), and Dr Ken Harvey is on their executive.

OIA Accessibility

OIA Accessibility

The Official Information Act has an accessibility problem.

I wrote recently about asking the government for information, having just published a guide to using the OIA. The OIA is a powerful tool, but it can be limited by how government agencies choose to follow it. One particular limitation that comes up again and again is accessibility.

There is a hashtag on Twitter that’s often used by journalists and activists, myself included, to talk about issues with the Official Information Act: #fixtheOIA

Today Nikki Macdonald, senior feature writer at the Dominion Post, started a discussion about a widespread and rather infuriating practice for responding to requests for official information:

In response to a recent request she made under the OIA, she received a PDF of a scanned document that included a large amount of tabular data.

The issue she mentions is one I have seen many times. It is common practice to take a document that will be released under the OIA, print it, then scan it back into a PDF, then send that PDF instead of the original document.

Printing and scanning documents allows for them to be signed, which is typically done with OIA response letters (though not with documents released alongside them). PDFs cannot be altered by the recipients, so the information is kept intact as it was released.

Also, perhaps most importantly, because these PDFs come from scanned documents they don’t contain any text. Instead, they just contain images of text. This means there is absolutely no way the recipient will be able to view information that has been withheld from released documents.

But releasing documents as images of text has a huge drawback too: accessibility

Most obviously, this will affect requestors who are blind or have impaired vision. If you rely on a screen reader to read these documents, it won’t be able to read a PDF that’s full of images. It’s a pain in the ass for those of us who are fully sighted as well.

There is software that can be used to convert images of text back into text, but it doesn’t always work perfectly, and often these image-based PDFs will include tables of data that are only really useful once converted into a spreadsheet. And, frankly, knowledge of how to use specialised software shouldn’t be a requirement for using the OIA to get usable information.

This isn’t the only accessibility issue with the OIA. Government agencies have also been known to do things like refuse to release documents online for unclear “security reasons“, instead telling the requestor that they must pay to have it posted to them.

Recently, Sam Warburton has been documenting a particularly trying OIA response on Twitter. First, he was sent documents that were locked by a password, which prevented him from copying text out of them:

He then made a second OIA request asking for all correspondence regarding the first request, so he could get to the bottom of how this bizarre twist had come about. The response was, well, not very accessible. He was sent 249 pages of printed documents, with the excuse being that it was “too big” to send digitally:

I think we should be able to expect better. Far better, in fact. And I’ve written the following open letter to the Ombudsman in the hope that this aspect of using the OIA can be improved:


Tēnā koe,

There has been a discussion on the “#fixtheOIA” hashtag on Twitter started by Nikki Macdonald today about the common practice of agencies sending responses to requests for official information in PDF format, where the contents of the PDF must be either transcribed by hand or converted using specialised software before they are useful.

I’ve observed this practice across several agencies, including those I have most commonly made requests to: New Zealand Police, the Department of Corrections, and ACC. It seems as though the response is written up, then it is printed out and the physical copy is signed before being scanned, and finally the scanned copy is sent to the requestor as a PDF. This means that, effectively, the response is delivered in the format of an image of text.

This has obvious accessibility issues for requestors who are blind or have impaired vision, but is also detrimental to sighted requestors.

For example, I recently received such a response from the Department of Corrections which included some long URLs. It is not possible to copy text from these responses without specialised software that many requestors will be unlikely to know much about (OCR – Optical Character Recognition – software can be used convert images of text into actual text). In this case, I had to type the URLs out by hand. Though there were only three of them in this instance, a lengthier response could easily have made this a significant barrier to accessing the released information.

A very long and difficult to type URL.

In the case raised by Nikki Macdonald, I understand she received a PDF response that, unexpectedly, also included large amounts of data. However, because the release was effectively an image of this data rather than a more usable format such as a spreadsheet, it will require a conversion process (either by hand or via OCR software) before it can be used.

I received a similar response in 2015, when I requested documents from the Ministry of Health but did not specify a preferred format. One of the documents I had requested was a large spreadsheet, but it was released to me as a PDF. Though this particular PDF was at least text-based, I still had to use specialised software to convert it to a usable format. I have made the PDF I was sent available online: compliance-of-comp-meds-manufacturers-2-oct-2007.pdf

While this issue can be pre-empted by requesting that the information should be released in a specific accessible format, such as an XSLX or CSV spreadsheet for data, this is not always realistic when it’s unclear whether or not the response is likely to include this type of information.

Despite section 16 of the OIA laying out certain responsibilities here, this approach is also not always respected by the agency. I have received multiple datasets as image-based PDFs despite requested explicitly as XSLX or CSV spreadsheets.

Here is an example of one response where I had to transcribe data by hand. The full response contains more data, as it continues onto the next page:

A table of data.

I have also assisted other requestors in transcribing information received this way, during which I was reminded that it can be quite a painful and time-consuming process for a requestor who is neither a fast typist nor able to use specialised OCR software.

In cases where OCR software is used to convert an image-based PDF response into a text-based one, which allows responses to be searched for certain keywords, this is often hampered by “Released under the Official Information Act” watermarks that are commonly overlaid on each page of released documents. These watermarks interfere with the software’s character recognition, so that portions of the text must instead be transcribed by hand. Poor quality scans, such as misaligned pages, can also cause issues with using OCR software to convert released information into an accessible format.

OCR software can also incorrectly transcribe parts of text, so it is always necessary to compare its output with the original PDF. This can be a time-consuming process, and is inaccessible to requestors who are blind or have impaired vision.

My impression, from talking with other users of the Official Information Act, is that this is a common and frustrating experience, widely regarded by requestors as being unnecessary and obstructive.

I accept that there may be cases where it would be difficult for an agency to release a text-based document with appropriate redactions, and where the reason for each piece of information withheld is clear and the withheld information cannot be accessed. However, there are clearly many cases where information could be released in a more accessible format, and where this would happen if the requestor had known to specify such a format in their request. I would hope that it might be expected that, when information can be released in any of several different formats with similar effort, the most accessible format should be used by default.

For example, after having seen me express frustration on social media about having to transcribe length URLs by hand from an OIA response, the Department of Corrections has agreed that they will now include links in the body of the email sent as a response. Although this only affects a small part of the response, this change would make the URLs significantly more accessible by allowing them to be used directly, without having to transcribe them from the PDF attachment.

I have looked through the Official Information Act and the official information legislation guides on your website for guidance on this accessibility issue.

The closest thing I have found is the relatively recent case note regarding a request from a prisoner who was unable to access information publicly available via the internet, after their request was refused under section 18(d).

Unfortunately, I have not found anything specific to this issue of accessibility. I’d greatly appreciate any advice you might be able to give on making requests in a way that should make a more accessible response more likely.

I would also like to suggest that a guideline on this issue might significantly improve both the experience of making requests for official information and the accessibility of released information.

I think it would be reasonable to expect agencies to release information with an accessibility-first mindset. This would be consistent with standards such as the New Zealand Government Web Toolkit, which recommends the following:

“Choose formats that are both easy to use and most likely to be accessible in the future. Choose openly documented formats over closed formats, or ensure that material released in closed formats is also accompanied by an equivalent in open formats.”

Particularly as many requests are made publicly available, either by the agency, through a service such as FYI.org.nz, or by direct sharing from person to person, it is important to consider issues such as accessibility for the blind and visually impaired for every request.

It is my opinion that accessibility should be considered an important part of information being made “available”, as per the Official Information Act’s Principle of Availability.

Ngā mihi,
Mark Hanna

Asking the government for information

Asking the government for information

You have the right to ask the government for information. Because of a law called the Official Information Act (OIA), they’re obliged to give it to you unless there is a good reason not to.

You’ve likely seen the OIA mentioned in the news. Phrases like “Documents released to [news outlet] under the Official Information Act” can often be found in important news stories. It’s in indispensable tool for holding the government to account.

Some of my articles here have also been based on information that I only had access to because of the OIA. For example, my articles about ACC’s funding of acupuncture have all been based heavily on information released under the OIA.

My articles on strip searches in prisons, organ donation, and the history of the complementary medicines industry have also all used information released under OIA.

An interactive visualisation I did of police use of force data released under the OIA found a place on the Herald Insights website earlier this year, and the story accompanying it was published on the front page. Organ donation statistics I’d requested also made the front page of the Herald in April of 2016.

It’s such a great and flexible tool, so I want to make sure everyone is able to use it.

It can feel a bit daunting if you think you might need to read the legislation itself to understand what you need to do. So to help make the OIA more accessible, I’ve written a guide to its use based on my experience with it.

You can find the guide at oia.nz

OIA Guide

I hope you find it useful!

NZ political parties’ transgender health plans

NZ political parties’ transgender health plans

Access to gender affirmation surgery in New Zealand is abysmal, with waiting lists that are decades long. I’ve asked our major political parties what they will do about it if elected.

On the 27th of July, I sent emails to four political parties outlining the issue of access to gender affirmation surgery*. I contacted the healthcare spokespersons for the Green, Labour, and National parties, and the co-leaders of the Māori party since I couldn’t find any health spokesperson for them. They each received a version of this email:

Tēnā koe,

Since the US president Donald Trump announced this morning that transgender Americans would not be allowed to join the US military, saying that their healthcare is too expensive[1], I have been reminded of a similar issue that we face here in New Zealand.

For many transgender people, gender affirmation surgery is potentially life-saving. Transgender people are a minority population in New Zealand who are at higher risk of depression and suicide[2]. It’s important that their needs are not forgotten.

I’m writing to you as the spokesperson for health for the XXXX Party, because this matter is something I want to be sure is addressed in the coming election. It is something I will be considering carefully before choosing which party will receive my party vote.

Currently, gender affirmation surgeries are funded out of the Ministry of Health’s special high cost treatment pool, at an intended rate of one “female to male” surgery and three “male to female” surgeries every two years[3]. However, since New Zealand’s only surgeon who could perform these surgeries retired in 2014[4] the surgeries appear to have stopped.

In response to a request made by Jennifer Shields, the Ministry of Health revealed in May this year that:

“There are currently 71 people waiting for male to female gender reassignment surgery and 19 people waiting for female to male surgery.”[5]

They also noted in their response that:

“There are no plans to increase the rate of surgery. A mathematical calculation suggests that the 71st person on the male to female waiting list will be operated on in around 47 years if the rate remains the same. Similarly, the 19th person on the female to male waiting list will be operated on in 38 years.”[5]

Currently, this situation is fairly untenable. Transgender people seeking gender affirmation surgery are left to pay out of their own pocket to travel overseas for surgery, or wait for decades in the hope that the government might eventually get around to them. It should frankly be cause for international embarrassment.

Which is why I’d like to ask you how the XXXX Party would address the health issues faced by transgender New Zealanders if you are voted into government in September.

I also know many other people who consider this an important issue and would like to know your answer. It would be great if the XXXX Party’s plan on this issue could be released publicly. In any case, I intend to share the response I receive with others who care about this.

Ngā mihi nui,
Mark Hanna

[1] https://www.nytimes.com/2017/07/26/us/politics/trump-transgender-military.html
[2] http://www.sciencedirect.com/science/article/pii/S1054139X13007532
[3] http://www.health.govt.nz/system/files/documents/publications/gender-reassignment-health-services-for-trans-people-in-nz-v3oct14.pdf
[4] http://www.radionz.co.nz/national/programmes/morningreport/audio/20148752/plastic-surgeon’s-retirement-leaves-sex-change-surgery-in-limbo
[5] https://twitter.com/jenkshields/status/867126476675481600

Later, after watching the Rainbow Wellington Election Forum video on Facebook, I also sent the email to Damian Light, the diversity spokesperson of the United Future Party. During the forum, he had mentioned something I hadn’t heard before about this issue:

I stand to be corrected on this if I’m wrong, but I understand that the waiting list [for GRS] could be cleared for as little as five million dollars by using overseas [surgeons]

So as well as asking for his response to the original email, I asked if he was able to point to his source for that statement, since I hadn’t been able to find one.

Though to put that number in a bit of context, ACC spent $8.6 million on acupuncture for lumbar sprain in 2014/15. This is despite their most recent review on acupuncture for musculoskeletal pain in 2011 finding that the evidence in this area was “inconclusive”.

Getting any response from some parties has unfortunately been like getting blood from a stone, and not all have responded by the time this article was published. If I receive more responses in the future, I will update the article to include them.

Here are the responses I have received so far. You can click the links below to jump to a particular party’s response:


Green Party

My email to the Green Party was sent to Julie-Anne Genter, as their spokesperson for health, but it was forwarded to Jan Logie’s office as it’s an issue she’s worked on.

Kia ora Mark,

Apologies for the delay, and thanks so much for your email. Julie Anne’s office passed this to Jan Logie’s office because Jan has been working very hard on issues of healthcare for trans people, but I’m cc-ing in Julie Anne’s EA Stuart as Julie also wants to stay connected to these issues.

Jan and the Green Party agrees with you about the huge, life-saving importance of gender reassignment surgery and that the waiting list is utterly unacceptable.

The Green Party agrees with the recommendations made by a coalition of groups to the panel of MPs on the International Day against Homophobia, Biphobia and Transphobia on May 17th this year, which were the following:

  • Require district health boards to ensure trans and gender diverse people’s access to gender affirming health services available in NZ, based on an informed consent model of healthcare
  • Provide sufficient funding to enable timely access to gender reassignment surgeries not provided through the NZ public health system
  • Support the development of training and resources on an informed consent model of healthcare for trans and gender diverse people, and provide information and resources for communities and individuals about accessing gender affirming services.

We also note that the aim should be to create a New Zealand based national surgical service for gender reassignment surgery, and to ensure that we have this specialist knowledge in New Zealand (as well as the interim measure of funding being available for people to travel for the surgery).

You might be interested to read the Green Party minority report on the select committee report on a petition around trans health care from 2015: https://www.parliament.nz/resource/en-NZ/51DBSCH_SCR69574_1/1911770f0cb53490fadba8dbcfb09d7c24955763

Jan is really passionate about this issue and will continue to work to advocate to ensure transgender and gender nonconforming people get access to the healthcare they need.

Please feel free to get in touch with any further questions.

Kind regards

Jessie Dennis, Senior Executive Assistant to Jan Logie MP

I also sent a follow-up question about what “timely access” means more precisely, after Jennifer Shields raised the question on Twitter:

Hi Mark,

I talked with Jan about this. As far as numbers, just like any urgently needed surgery, the ideal wait time is none at all. Of course, while that might not always be realistic, we’d work to get it as close to that as possible.

Many Thanks

Jessie Dennis, Senior Executive Assistant to Jan Logie MP

The Green Party also has a Sexual Orientation and Identity Policy.

At the time I wrote this section, that policy was last updated in 2014 and does not mention the issue of access to gender affirmation surgery. However I believe some updates are being worked on so there may now be a more recent version.


Labour Party

I’ve yet to hear back from Labour. Originally I contacted their health spokesperson Dr David Clark, but after seeing Grant Robertson speak on the topic at the Rainbow Wellington Election Forum I forwarded the email to him on the 23rd of August. I’ve had an acknowledgement from his EA, but no response yet.

Update 2017/09/21 I’ve heard back from Grant Robertson about this. Here is his response:

Hi Mark

Apologies that you have not had a detailed reply, it is the result of a bit of confusion over who was responding and then just general busyness. As you said in your email you are aware of our Rainbow Policy. Here is the link again for ease of reference. http://www.labour.org.nz/rainbow

It is worth pointing out the specifics of that in terms of transgender health issues in particular

  • improve access to affordable primary care based on the informed consent model, particularly for younger, trans, and intersex New Zealanders. This also includes training and resources for health professionals about sexual orientation and gender diversity
  • provide targeted suicide prevention funding to build capacity of rainbow community support organisations and mainstream crisis support and services.
  • increase resourcing for youth mental health
  • support and ensure all district health boards reduce barriers for trans and gender diverse people to access gender affirming healthcare, transition related medical support (including hormones, social support and other cosmetic interventions), and an assessment of the need for gender reassignment surgery as an elective service
  • ensure fair access to publicly funded gender affirming surgical options for trans and gender diverse people based on need.

Labour has allocated an additional $8 billion over four years to the health sector to meet these, and other, priorities. We will invest in the high cost treatment pool so that we are able to send people to get the surgery they need but we will also focus on building capacity back up in New Zealand to perform surgery, because we need to do both to make an impact on the waiting list.

I hope that answers your questions.

Regards

Grant

Grant Robertson

While waiting for my response, an article was published in the New Zealand Herald that gave some detail around Labour leader Jacinda Ardern’s response to a question from a student about access to gender affirmation surgery:

One of the students asked Ardern what Labour’s stance was on helping more people have sex reassignment surgery, and providing other support.

The Labour leader agreed greater support was needed, at which point [Annette] King added that one problem was a lack of specialist surgeons in New Zealand, and more training was needed.

“I also was married to a transgender person,” King said.

“So I understand very much the issues for transgender people, and the need to have access to surgery and to counselling and drugs and support. We are very supportive of that in our policy.”

NZ Herald

Labour has a Rainbow policy, which has this to say on access to gender affirmation surgery and other healthcare for trans New Zealanders:

Labour will:

  • improve access to affordable primary care based on the informed consent model, particularly for younger, trans, and intersex New Zealanders. This also includes training and resources for health professionals about sexual orientation and gender diversity
  • support and ensure all district health boards reduce barriers for trans and gender diverse people to access gender affirming healthcare, transition related medical support (including hormones, social support and other cosmetic interventions), and an assessment of the need for gender reassignment surgery as an elective service
  • ensure fair access to publicly funded gender affirming surgical options for trans and gender diverse people based on need.

Also, the minority view on a petition on this topic noted in Jan Logie’s response from the Green Party was apparently from both the Green and Labour parties (it’s written from the perspective of the Green Party but in the heading it notes it’s also the view of the Labour Party): https://www.parliament.nz/resource/en-NZ/51DBSCH_SCR69574_1/1911770f0cb53490fadba8dbcfb09d7c24955763


Māori Party

I contacted Māori Party co-leaders Marama Fox and Te Ururoa Flavell, and received this response from Marama Fox:

Tēnā koe Mark

Thank you for your letter to me regarding the health issues faced by New Zealand’s transgender community. I appreciate you writing to me and I apologise for the delay in responding.

Regarding the concerns you note about the availability of gender affirmation surgery, I too share your concerns as this leaves many of our whanaunga in an untenable position. As such I have referred your email to the Minister of Health, Hon Dr Jonathan Coleman for his response.

Mark, the Māori Party has not developed a specific transgender policy or a wider LGBT policy for the 2017 General Election. However I note that as a Party born of the dreams and aspirations of tangata whenua, a large proportion of whom identify with the LGTB and transgender communities, the Māori Party seeks to engage with all whānau to enable them meet their aspirations whatever they may be, as well as address any problems that they may be experiencing. To this end we welcome organisations and individuals that wish to engage with our party so that we may better support the transgender and LGBT communities.

Thank you again for writing to me and again I apologise for the delay in responding from you. I look forward to hearing from you in the future.

Nāku noa, nā

Marama Fox
Co-leader of the Māori Party and List MP for Ikaroa-Rāwhiti

I received this response as a PDF and wasn’t able to copy/paste text from it, so typed it out by hand. Please assume any mistakes in the above text are mine.


National Party

I contacted Health Minister Dr Jonathan Coleman about this. I was told he had asked Ministry of Health officials to advise him on the topic before he responded, and though I haven’t received his response yet I was told on the 28th of August that I should have it within “the next week or so”.

If the National Party has an LGBT-specific policy, I haven’t been able to find it.

Update 2017/09/11 I’ve heard back from Dr Jonathan Coleman about this. Here is his response:

Dear Mr Hanna

Thank you for your email of 27 July 2017 about transgender health services.

The Ministry of Health considers that transgender health services are best organised and developed on a regional basis. I am advised that the Ministry is aware of developments being undertaken by some district health boards.

The Northern region in particular has been putting effort into this, and the Ministry supports the approach being taken. The region’s intention is to develop a linked health service for transgender people, creating clear pathways for health by putting forward a plan based on collaboration across the region and through levels of community, specialist and hospital health services.

Work to date has included establishing a regional transgender steering group and clinical and consumer advisory group, and appointing a Clinical Lead and Project Manager. A series of consumer workshops have been held across the Auckland metropolitan region, and care pathways and service specifications are being developed. A Northern Region Transgender Health Work Plan has recently been adopted in order to progress this work.

As the Northern region makes progress, the Ministry will encourage other regions to observe this and to strengthen their own regional approach to transgender services.

Thank you for writing.

Yours sincerely

Hon Dr Jonathan Coleman
Minister of Health


United Future Party

I emailed Damian Light, as the United Future Party’s spokesperson for diversity, after seeing him speak at the Rainbow Wellington Election Forum. As well as sending him a version of the same email other parties received, I asked him if he would be able to send me the source for a statement he made during the forum:

I stand to be corrected on this if I’m wrong, but I understand that the waiting list [for GRS] could be cleared for as little as five million dollars by using overseas [surgeons]

Damian Light

He was quick to respond with a link to the United Future Party’s LGBT policy:

Thanks Mark,

As spokesperson for diversity I had the pleasure of launching our policy on 8 August (31 year anniversary of the homosexual law reform coming into effect).

We’ve published it on our website under policies (http://unitedfuture.org.nz/lgbt/) but here are the key points around healthcare;

  • Ensure health providers have appropriate plans, practice standards and funding to responsiveness to the health needs of rainbow communities.
  • Ensure trans and gender diverse people’s access to gender affirming health services based on an informed consent model of healthcare. Where not available in New Zealand, provide sufficient funding to enable timely access.

The $5m detail came from an article online but I can’t find it right now (away from my Pc with all my files used to create our policies).

I’ll try track it down and send it through.

Kind regards,

Damian Light
Party Leader + Candidate for Botany
Spokesperson for Auckland Issues and Diversity

Update 2017/09/10 After following up, I’ve been told that Damian Light hasn’t been able to find the source for the $5m statement. If anyone else knows where this number might have come from, it would be great if you could share a link in the comments or email me about it.


I should also mention that Claire Black has published an article about various parties’ approaches to trans rights as part of Andrew Chen’s A Policy A Day series. Claire looked at the issues of trans healthcare in New Zealand and amending the Human Rights Act to explicitly outlaw discrimination on the basis of gender identity. She also included more of the minor political parties that I haven’t contacted. You can find her article here: A Policy A Day: Trans Rights

* Often referred to as “gender reassignment surgery” or GRS, I prefer not to use this term because of its false implication that someone’s gender can be changed through surgery. Alternatives include “gender confirmation surgery” and “gender affirmation surgery”. I prefer the latter because I think it carries less of an implication that it is somehow necessary for trans people to have surgery in order to “confirm” their gender.