Gonorrhoea: the pain and shame of notification

This article describes the unwieldy gonorrhoea notification process in New Zealand following recent legislative reforms.¹ We seek changes to improve control of this serious infectious disease.

New Zealand is failing to contain sexually transmitted infections (STIs). Our chlamydia diagnosis rates are higher than rates in the United Kingdom and Australia, with infection disproportionately affecting young Māori and Pacific Women.^2–5 Syphilis cases have increased 400% since 2012; concentrated among gay and bisexual men, but now bridging into heterosexual populations and causing stillbirths. Gonorrhoea is also rising particularly among males in Auckland.^4,5 We can paint this picture because of disease surveillance, a cornerstone of STI control efforts alongside testing, treatment and behaviour change programmes.⁶ A robust surveillance system alerts us to outbreaks, enabling appropriate, targeted and timely public health interventions to interrupt transmission.^1,7

To augment surveillance of Section C diseases in New Zealand (gonorrhoea, syphilis and HIV), the Health Act was amended in 2017 to add health practitioner notification to pre-existing direct laboratory reporting.^1,7–9 The Ministry of Health assured Parliament that the notification changes would not pose significant additional compliance costs on general practice.¹⁰ Under the new system introduced in 2018, health practitioners are required upon ‘reasonable suspicion’ of a notifiable disease to ‘forthwith give notices in the prescribed form to the medical officer of health’ (s.74(1)(a)).^9,11 Failure to comply is punishable by ‘a fine not exceeding $500 and, if the offence is a continuing one, to a further fine not exceeding $50 for every day on which the offence has continued’ (s.136).⁹ The ‘prescribed form’ is set out in the Health (Infectious and Notifiable Diseases) Regulations 2016 (see Appendix 1).^12,13

On a routine day in general practice, working my way through test results during my lunch break, I came across an anorectal swab positive for gonorrhoea. The laboratory report stated:

‘This is a Section C disease notifiable under the Health Act using NON-IDENTIFIABLE data. You are legally required to complete a notification form. Instructions on how to access the form are available on your HealthPathways, the ESR surveillance website or from your local Public Health Unit.’

Gonorrhoea is not something I see every day. As recommended, I turned to HealthPathways to access the notification form. There was nothing about notification. I turned to Google. The New Zealand Sexual Health Society (NZSHS) website had STI management guidelines, but nothing about notification. The Health Navigator website also drew a blank, as did the Ministry of Health website. I Googled ‘ESR’ and typed ‘gonorrhoea notification’ into the Institute of Environmental Science and Research (ESR) search bar: ‘Sorry, your search query did not return any results’. I then Googled the Auckland Regional Public Health Service website and put ‘gonorrhoea’ into their search bar: ‘We can’t find what you’re looking for’. I turned to my colleagues for help, but no one in the practice knew. I phoned the Medical Officer of Health. I was informed that I could not notify gonorrhoea to the public health service by phone; rather, I had to notify ESR using a special online form. Helpfully, they provided the link: ‘surv.esr.cri.nz’.

I typed ‘surv.esr.cri.nz’ into my computer and was taken to ‘Public Health Surveillance’. I clicked on ‘Public Health Surveillance’, then I clicked on ‘Sexually transmitted infections’, then I scrolled down and clicked on ‘Gonorrhoea’, and then I clicked on ‘click here to complete the web-based questionnaire’. Up came: ‘Instructions for gonorrhoea notifications’ (see Appendix 2). I skimmed down the page of ‘instructions for gonorrhoea notifications’. At the bottom were instructions on how to access the link to the notification form: ‘Please type the following URL into your web browser to be sent the questionnaire: bit.ly/esrgono1’.

I tried to copy and paste the URL, but the ‘instructions’ have been designed to make this impossible. You have to write down the URL, open a new web page and then type it in manually. My enthralled colleagues were looking on over my shoulder egging me on, patients were mounting up in the waiting room and lunch was a distant memory. I wrote down the URL on a piece of paper, opened a new web page, and typed in ‘bit.ly/esrgono1’.

Up popped yet another page: ‘Request For Questionnaire Link - Fill in this survey to receive [sic] a unique Gonorrhea [sic] Questionnaire link’. Emboldened in red was written: ‘We require a registration number AND a correct security question answer to send a questionnaire link’. The survey requested I enter my registration number, my email address, and the answer to ‘267 plus 4358’. My colleagues whooped and high-fived. I looked blankly at the screen. You cannot be serious.

I typed in my registration number and my email address, then I worked out the maths and typed the answer (4625) into the form. I hit ‘enter’. There was a short pause and then the email with the ‘questionnaire link’ arrived. I clicked on the link. Up popped the ‘Gonorrhoea questionnaire interim’ (see Appendix 3).

The ‘prescribed form’ requests over 30 fields of information (see Appendix 3). The ‘must provide’ information includes the patient’s sex; date of birth; NHI (National Health Index); Case Code (first two letters of surname, first initial of given name, sex, date of birth); District Health Board; and ethnicity. Other information requested includes risk factors (HIV status, sexual behaviour, number and sex of sex partners); ‘from whom the infection was probably acquired’ (regular or casual partner, client); and details about management and contact tracing. Undoubtedly, the completion of this form (once accessed) would pose significant compliance costs, and it is unlikely busy clinicians would routinely complete the non-compulsory fields. Much of that information is not routinely collected in general practice, including sexual history and number and sex of partners.¹⁴ This raises the question about completeness and quality of the data, and the ability of the notification system to fulfil its goals.

The form reiterates that gonorrhoea is ‘notifiable … using non-identifiable data’, but insists health practitioners ‘must provide’ date of birth, NHI and Case Code. This may be consistent with the Health Act s.74, which states health practitioners ‘must not disclose identifying information’ (3A), which is defined in the Act as the patient’s ‘name, address, and place of work or education’ (3C).⁹ However, it is not consistent with other rules regarding the identifiability of data,¹⁵ including guidance provided by the New Zealand Health and Disability Ethics Committees.¹⁶ The Committees’ guidance says a patient’s name, date of birth and NHI are ‘identified data’. The NHI by definition is identifiable, being ‘a unique identifier’.¹⁷ The Case Code is ‘partially de-identified’ data, meaning the clinician may re-identify the data, but not recipients who may yet identify duplicates. Data that have had all identifiers permanently removed and so are not re-identifiable, including data containing encrypted NHI numbers, are considered ‘de-identified data’; and data that have been collected without personal identifiers are ‘anonymous data’. Thus, the ESR form is telling health practitioners to notify using ‘non-identifiable data’, but then insisting they must provide ‘identified’ data (date of birth and NHI) and ‘partially de-identified’ data (Case Code). This is confusing at best.

In our experience, confirmed by several sexual health specialists, New Zealand’s current STI notification process is Kafkaesque. The process imposes onerous reporting duties under threat of fine, while hiding the ‘prescribed form’ and requiring clinicians to jump through mathematical hoops to access it. The rules around data identifiability are inconsistent, which adds to the confusion around a doctor’s duty to protect confidentiality and the patient’s right to health information privacy. Combined, these changes risk eroding the goodwill of clinicians upon whom a successful notification programme relies. While the benefits of notification may justify these real harms, to date, there is little evidence of benefit or that the data are even being used. The most recent comprehensive national report on STIs relates to 2015 data.⁵ This reflects years of underinvestment in the STI clinical, research and prevention workforce in New Zealand.¹⁸

Surveillance and timely action against serious infectious diseases are important. We could learn from HIV/AIDS surveillance in New Zealand. The history of HIV reporting in New Zealand demonstrates that enhanced surveillance can work well for all stakeholders, even without legislative back-up. Factors promoting HIV data completeness and speediness include cooperation, coordination and communication by the AIDS Epidemiology Group with health practitioners. Compliance is also motivated by the fact that HIV data are regularly disseminated to the New Zealand AIDS Foundation and the HIV sector in a timely way, who in turn use that intelligence to guide prevention programmes.¹⁹

At the very least, successful surveillance and appropriate public health action requires information on the sex of the partner (ie whether the patient is having sex with men or women or both). Outbreaks among men who have sex with men are very different to outbreaks among heterosexual men. This information will describe STI trends in the three key sexual health risk groups of heterosexual women, heterosexual men and gay and bisexual men; intelligence that is essential for the STI sector to plan appropriate responses.

To improve the surveillance of gonorrhoea in New Zealand, we suggest the following changes to the interim notification system:

1. The link to the prescribed notification form be readily available to health practitioners; for example, on positive test results and on the websites of HealthPathways, ESR, Ministry of Health and the Sexual Health Society.

2. Positive test results contain reminders to prompt contact tracing.

3. The requirement for health practitioners to provide correct answers to mathematical equations before being granted access to the form be waived.

4. The questionnaire should collect only information that is feasible for clinicians to provide and essential for surveillance and action. The sex of the partner is essential. Useful data should be prioritised over interesting data, and data completeness over data comprehensiveness.

5. Definitions of data identifiability should be clear and consistent with existing definitions.

6. Notification data should be analysed and disseminated promptly, including to health practitioners, and regularly reviewed to inform control strategies and service commissioning.

The authors declare no conflicts of interests.

This research did not receive any specific funding.