A voice for women's health

AWHC Submission on Proposed Changes to the National Health Index (NHI) system

The Ministry of Health is considering undertaking a number of changes to the National Health Index (NHI) system. Changes made will be included in the associated Consumer Health Identity Standard.

The MoH sought comment to assist in establishing:
a) if a particular proposal should proceed at a concept level, and
b) a relative priority for each proposal.

They pointed out that some changes are essential to maintaining the operating life of the NHI system – for example, the proposed extension to the NHI numbering system.

The Auckland Women’s Health Council commented on a number of the proposed changes in a submission lodged in August 2018. In the summary of our submission, below, we have excluded section on which we did not comment or did not feel qualified to comment.

 
1. NHI Numbering Extension

The National Health Index (NHI) has assigned the majority of the currently available NHI numbering range.  At current rates of allocation there are sufficient available NHI numbers for another 7 to 8 years. All existing NHI numbers are forecast to be exhausted around 2025.

The Ministry’s recommended option is to change the check digit algorithm and number format within the existing NHI identifier length of 7 characters, from AAANNNN to AAANNAA. The transition would occur once the existing number range is exhausted and the old format would be retained alongside the new format.  No mapping between NHI numbers would be required.
 

The AWHC supports this change and understands the need to future proof the NHI numbers to reduce/limit costs and inconvenience to the consumer, tax payer, Ministry of Health, and health services providers.

 

2.     Biological Sex recorded at Birth:

What change is wanted, why and why now

Statistics New Zealand (StatsNZ) is about to review the standard for biological sex recorded at birth, and will be considering a third category for people who are intersex as part of this review. This change would be implemented once the standard has been reviewed, expected to be later in 2018/2019. Adhering to the data standard would support data collection aligned with other government data sources.

Currently the NHI does not capture sex, instead it only captures gender. Capturing data on intersex people would enable health care that better meets their particular needs, and assist in the implementation of frameworks to uphold the rights of intersex New Zealanders.

Effect of the change – local, national, other sector agencies

A clear understanding of the nature and extent of the issues facing intersex people across New Zealand is necessary for the development of comprehensive and evidence- based policies and practice.

It is expected that there would be minimal effect on the NHI system itself. Most effect will occur in adjusting interfacing systems (eg. at DHB and primary care agencies) to comply with the new recording requirement.

There are similar effects on other systems – notably National Collections. This action can be treated as a separate exercise although many of the same (mapping) activities will be required.

Adhering to a national standard would improve the ability to link data with other government agencies, as definitions would be consistent.
 

The AWHC has concerns about all changes relating to biological sex at birth, gender identity and sexual orientation. While we understand the implications for clinical care and research of having this information available, we do not understand why this information is necessary for the purposes of the NHI. The NHI is a number that allows the identification of each unique individual and we see no need to include potentially sensitive information that can be included in the clinical record or proposed national electronic health record for that individual.

This is especially important given the wide range of people able to access the NHI and the sensitivity of this information for some people.

We also note that not all intersex individuals can be identified at birth and question the need for this information to be held on the NHI rather than the clinical record.

It must be possible to uniquely identify every New Zealander without this information. Through the NHI and clinical record for all people who have accessed health care, this information can still be available through anonymised/de-identified data for research, and service planning and delivery, or obtained through the New Zealand census or New Zealand Health Survey.

The AWHC is particularly concerned about the security of sensitive information held on people from the LGBTQI community, in particular transgender individuals and the holding of data on biological sex at birth, that may then be visible to a wide range of people working in the health and disability sector.

The AWHC submits that widespread and thorough consultation with the LGBTQI community be held before any changes are made that would see the inclusion of biological sex at birth in the NHI. This consultation should be proactive not passive to ensure that as many members of that community have an opportunity to discuss, consider and put forward their views on a change that has the potential to adversely affect them more than other groups of New Zealanders.

There is the potential for significant and harmful stigmatisation of those New Zealander’s whose gender identity does not match their biological sex at birth, especially given the wide access to the NHI. Historically, the terms "sex" and "gender" have been used interchangeably, and understanding of the distinction between the two concepts cannot be assumed to be widespread. The inclusion of biological sex at birth on NHI greatly increases the likelihood of misgendering. Misgendering can have serious negative consequences for a gender diverse person’s self-confidence and overall mental health. The inclusion of this data has the potential to be expose gender diverse/gender fluid New Zealanders to cruel and degrading experiences for no adequate reason and certainly for no benefit or purpose associated with uniquely identifying them.

Another issue of concern to the AWHC is the wide access to the NHI and the security of the information held on the NHI. There are recent examples of health professionals wilfully and knowingly accessing health information on patients for whom they were not providing health services for prurient and voyeuristic purposes (e.g. Patients unaware of staff prying in their files, NZ Herald). Some of the information proposed to be included may not be public knowledge and unauthorised or unjustified access to that information, while an abuse by the health services providers/practitioners involved and presumably punishable, may have significant negative consequences for the consumer whose information is accessed that outweigh any benefit of inclusion on the NHI.

 

3. Gender Identity:

What change is wanted, why and why now

We propose that the NHI is changed to reflect the Statistics New Zealand (StatsNZ) standard. In 2015, StatsNZ developed a national Standard to improve data collection on trans and gender diverse New Zealanders. The standard has been developed through consultation and testing.

The StatsNZ standard is currently as follows:

1.     Male

11  Male / Tāne

2.     Female

21  Female / Wahine

3.     Gender diverse

30  Gender diverse not further defined / Ira tāngata kōwhiri kore

31  Transgender male to female / Whakawahine

32  Transgender female to male / Tangata ira tāne

39   Gender diverse not elsewhere classified / Ira tāngata kōwhiri kore

The StatsNZ standard adds another field for gender diverse people to identify as one of four general categories.

The opportunity to improve data collection is timely as we currently have a programme of policy work to improve gender affirming care, and political support to improve data. These changes are supported by the 2017 Labour manifesto commitments and statements from the Minister of Statistics on the need to improve data collection on LGBTQI+, including transgender and gender diverse people.

Aside from the policy implications, data collection that does not capture transgender and gender diverse people can be non-inclusive as people may not be able to have their gender recognised.

This issue was criticised by members of the transgender and gender diverse community when the 2018 Census did not capture gender diversity.

The AWHC has concerns about to the way in which gender identity is recorded and changed in the NHI and its relationship to biological sex at birth. However, we agree that broadening the categories for gender identity is overall a positive move, as this would mean there is less chance of people being misgendered.

The AWHC is particularly concerned about the security of sensitive information held on people from the LGBTQI community, in particular transgender individuals, that may then be visible to a wide range people working in the health and disability sector. Furthermore, we have concerns for gender diverse people and their experience in challenging/changing the ‘official records’. This can be a distressing experience; for example, meeting standards and proof required, etc. The AWHC wants to know how the processes for challenging/changing gender identify fields will be administered if this data is to be included; will it be sensitive, accessible and comfortable for gender diverse people?

This is important given the wide range of people able to access the NHI and the sensitivity of this information for some people, many of whom may not have publicly announced a change in gender identity and/or may live in small communities.

The AWHC submits that widespread and thorough consultation with the LGBTQI community be held before any changes are made that would see the inclusion of gender identity at birth in the NHI. This consultation should be proactive not passive to ensure that as many members of that community have an opportunity to discuss, consider and put forward their views on a change that has the potential to adversely affect them more than other groups of New Zealanders.

There is the potential for significant and harmful stigmatisation of those New Zealander’s whose gender identity does not match their biological sex at birth, especially given the wide access to the NHI. The inclusion of this data has the potential to be expose gender diverse/gender fluid New Zealanders to cruel and degrading experiences for no adequate reason and certainly for no benefit or purpose associated with uniquely identifying them.

 

4. Sexual orientation:

What change is wanted, why and why now

The NHI system does not currently hold information about patients’ sexuality, or sexual orientation. Sexual orientation covers the ways in which a person’s sexuality is expressed, and the terms they choose to identify with. Sexual orientation includes heterosexual, gay, lesbian, bisexual, pansexual, and asexual, among others.

Statistics New Zealand (StatsNZ) has developed a framework for sexual orientation, and sought public feedback. StatsNZ will analyse the feedback it received, and work with other organisations to develop a new statistical standard for sexual identity, which is to be released later in 2018.

We propose the NHI collect data on sexuality according to this standard.

Accurately collecting statistical data on the Rainbow community means that government agencies can take an evidence-based approach to policy formation and programme development in health, as well as in areas such as social development and justice. This data will aid our understanding of the population and help our work in addressing equity issues.

The AWHC has concerns about including a sexual orientation field.

Sexual orientation is fluid and any given individual may identify as having more than one sexual orientation over their lifetime, so we fail to see how this is relevant in terms of identifying individuals. Furthermore, we have concerns for people whose sexual orientation may change over time and their experience in challenging/changing the ‘official records’. This can be a distressing experience. The AWHC wants to know how the processes for challenging/changing fields will be administered if this data is to be included; will it be sensitive, accessible and comfortable for those with non-hetero sexual orientation? In addition, given that most New Zealanders are assigned an NHI number at birth at what point is the sexual orientation field completed, or will there be an assumption at birth that all babies are heterosexual and then those who identify with another sexual orientation at a later point in their lives, will have to go through the process of having that assignment on their NHI changed?

While we understand the implications for clinical care and research of having this information available, we do not understand why this information is necessary for the purposes of the NHI. It must be possible to uniquely identify every New Zealander without this information. Through the NHI and clinical record for all people who have accessed health care, this information can still be available through anonymised/de-identified data for research, and service planning and delivery, or obtained through the New Zealand Census or New Zealand Health Survey.

This is especially important given the wide range of people able to access the NHI and the sensitivity of this information for some people, many of whom may not have publicly announced their sexual orientation.

The AWHC submits that widespread and thorough consultation with the LGBTQI community be held before any changes are made that would see the inclusion of gender identity at birth in the NHI. This consultation should be proactive not passive to ensure that as many members of that community have an opportunity to discuss, consider and put forward their views on a change that has the potential to adversely affect them more than other groups of New Zealanders.

 

5. Ethnicity:

What change is wanted, why and why now

The NHI system currently holds ethnicity information based on self-identification provided by the patient. At least one and up to six ethnicities may be recorded. The format required is set out in section 2.5 of the Consumer Health Identity Standard.

The suggestion is that in addition to recording a numeric interpretation of the ethnicity value, the raw text as provided by the patient should also be recorded/stored.

This change would allow and improve consistency with other collections (eg. the National Enrolment service) thereby improving the quality of information upon which decisions are made – for example: funding allocations and the assessment of the equality of treatment.

While the change is not critical, there is an opportunity to minimise cost and inconvenience in making this change. This would utilise economies of scale factors with other more minor changes and enhancement to the NHI Standard/System.

In principle the AWHC supports/has no objection to this change.

 

7. Language Code:

What change is wanted, why and why now

The NHI system currently holds information on the language spoken by the patient. Multiple languages can be recorded. The format required is set out in section 4.1 of the Consumer Health Identity Standard.

The key here is the current prescription to use Alpha-2 characters to record language.  This code list does not include, for example, codes for Cook Island Māori; Tokelauan, Niuean, or Tuvaluan.

The suggestion is to move to Alpha-3 that does include codes for these languages.

This change would allow patients from the above three countries (and possibly others) to record their own spoken language. It will remove a bias against languages not currently listed and improve equity of treatment for these individuals – particularly if there is a need for a translator during treatment.

While the change is not critical, there is a least cost/inconvenience opportunity to make this change utilising economies of scale factors with other more minor changes and enhancement to the NHI Standard/System.

The AWHC supports this change in particular for the purposes of improving equity among Pasifika people resident in or citizens of New Zealand. Given that New Zealand has large populations of Pacific Island peoples, in particular Cook Island Māori; Tokelauan, Niuean, or Tuvaluan peoples, it seems only reasonable that their spoken languages are able to be included in the NHI.

 

9. Disability status:

What change is wanted, why and why now

What is disability?

Disability is an impairment that may be cognitive, developmental, intellectual, mental, physical, sensory, or some combination of these. It significantly affects a person's life activities and may be present from birth or occur during a person's lifetime. In 2013, 24 percent of the New Zealand population were identified as disabled, a total of 1.1 million people.   People with disabilities generally have poorer health and greater unmet needs, and often report seeking more health care than non-disabled people.

There are multiple benefits to collecting disability status in the NHI system.

New Zealand has significant limitations in its national disability data collection and capability in establishing data on disabled people. In particular, the lack of disability identification in national health and disability surveys is a major barrier to understanding and measuring outcomes for disabled people.

The NHI system does not currently hold disability information. Disability status should be collected alongside other important demographic variables. Having a disability identifier in the NHI will address the strong need in New Zealand for better information and data about disabled people and would deliver many tangible benefits such as:

  • enabling more accurate representation of the New Zealand disabled population and analyses of health, disability and wellbeing
  • understanding a disabled person’s journey through the health and disability system over their lifetime
  • supporting the production of statistical publications and facilitating research and evaluation
  • better understanding the outcomes disabled people get from their health care and disability supports
  • using data and evidence to inform policy, planning and decision making
  • linking data to other major databases, for example through the Integrated Data Infrastructure (IDI), and enable broader disability population analysis across different sector services
  • supporting the monitoring of progress and results of both the New Zealand Disability Strategy and the New Zealand Health Strategy
  • helping to meet New Zealand's international disability reporting obligations, including through the United Nation’s Convention on the Rights of Persons with Disabilities (CRPD).

Disability status can be collected using a short set of six questions.

We suggest that disability status is collected in the NHI system from patients using the Washington Group Short Set (WGSS) of questions. The Washington Group on Disability Statistics, comprising over 100 representations (of national statistical offices and international non-governmental and disability organisations), developed the WGSS for countries to use in surveys of the general population. The WGSS is a set of six short questions designed to identify people with a disability. The questions ask whether people have difficulty performing basic universal activities (walking, seeing, hearing, cognition, self-care and communication).

The WGSS has been recognised as the standard tool internationally for collecting data on disability status and has been vigorously tested and validated. It is increasingly being included in population surveys in New Zealand such as Census 2018, the New Zealand Health Survey, the General Social Survey and the Household Labour Force Survey.
 

The AWHC has concerns that this question identifies people by their disability rather than seeing them as a person who has a disability. In addition, disability status may change over time, and therefore is not necessarily useful for uniquely identifying an individual. We fail to see how disability is a useful identifier at all, and may have negative consequences for some individuals especially with the wide access to the NHI.

In addition, the questions don’t appear to be useful in some circumstances. For example, a profoundly deaf person who uses cochlear implants might answer “No - no difficulty” to the question “Do you have difficulty hearing, even if using a hearing aid?” and would not be identified as disabled. However, for a profoundly deaf person, living their entire lives in a hearing world through cochlear implants, if that person had a sudden failure of their aids, say battery failure, they would then be quite disabled trying to function without them. Disability is not an immutable state and those questions may understate a person’s disability depending on the circumstances, and therefore be of little benefit.

For clinical care and research purposes, including this data on the clinical record and not the NHI seems far more appropriate.

 

10. Residency Status:

The National Health Index contains a “Residency Status” attribute. This attribute is intended to identify a patient’s permanent resident status and is commonly used to establish eligibility for publicly funded health services.

Under the existing definition a permanent resident is a person who:

(a)  resides in New Zealand; and

(b)  is not a person to whom section 7 of the Immigration Act 1987 applies or a person obliged by or pursuant to that Act to leave New Zealand immediately or within a specified time or deemed for the purposes of that Act to be in New Zealand unlawfully.

If the attribute is “Y” the patient is deemed to be a permanent resident (New Zealand citizen or classified as ‘ordinarily resident in New Zealand’).

If the attribute is “N” the patient is deemed to be a temporary resident (not a New Zealand citizen, does not have New Zealand ‘ordinarily resident’ status)

Over 7.1 million ‘live’ NHI records currently have the residency status set as “Y” and 900,000 as “N”, however the quality of the information that has been captured is dubious. The definition of residency is often interpreted differently and there have been historic cases of integrating systems defaulting the residency status to “Y” for all patients

In 2011, during the last NHI upgrade, the Heath Identity Programme (HIP) Sector Advisory Group and HIP Governance Group agreed that the Residency Status attribute should be deprecated and replaced by other ‘evidence of eligibility’ fields. A decision was taken to enable the storage of two new data elements to assist with the eligibility decision-making process:

(a)  Place of Birth (Locality & Country); and

(b)  NZ Citizenship Status

Currently, Residency Status in the NHI can only be updated via legacy HL7 messaging and this is largely restricted to DHBs. The Ministry’s newer SOAP web service APIs do not include Residency Status (although they do include Place of Birth and NZ Citizenship Status).
 

The AWHC supports the inclusion of residency status to ensure that eligible people can access publicly funded health care.

 

11. Opt-Out status Indicator:

What change is wanted, why and why now

This field is based on the Health Information Governance Guidelines (HISO 10064:2017, section 4.3.2) that allows a person to set a ‘do not disclose’ option. This would mean that information would be collected and held on the NHI, but consideration can be given to whether individuals should be able to opt-out from information held about them on the NHI being disclosed to third parties.

Effect of the change – local, national, other sector agencies

The creation of an NHI is not an interference with personal privacy, and has four primary benefits:

  • Reducing the risk of a health provider making errors based on wrong or incomplete information;
  • Maintaining the privacy of a person’s health information;
  • Assisting with the planning, co-ordination and provision of health and disability services; and
  • Identifying information held in the Medical Warning System.

The NHI number enables individuals to be positively and uniquely identified for the purpose of treatment and care, and for maintaining their medical records. Healthcare providers can also be sure they are talking about the correct person therefore reducing the chance of making a clinical decision based on wrong information.

Further, the NHI number is fundamental for healthcare services such as pharmacy, laboratory, and admissions to link this information in order to get a better understanding of their needs.

The AWHC do not support an opt-out option for the NHI, but, with respect to our stated concerns about biological sex at birth, gender identity, sexual orientation and disability status, we do not believe that this information should be held on the NHI, thus reducing the reasons that some individuals might wish to opt out.

There may still be information held on the NHI that is an issue for some people in terms of privacy and safety, for example, the address of a woman or children in a women’s refuge. Of concern is the wide access to the NHI and all the information on any given individual held on it, especially by non-medically trained employees of health providers.

An opt-out option would seem to reduce or negate the ability of this system to act as a unique identifier of all New Zealand residents. However, if the biological sex at birth, sexual orientation and disability status is ultimately included then there should be a non-disclosure option for these and other fields.

 

12. Delegation rights- general:

What change is wanted, why and why now

This field is based on the concept of the NHI holding a record of an authority to act on behalf of someone. Examples of such authorities include:

  • Power of Attorney - ordinary general (PPPR Act)
  • Power of Attorney - enduring (property, personal care) (PPPR Act)
  • Welfare guardian (PPPR Act)
  • Guardianship orders (Care of Children Act)
  • Custody orders (Oranga Tamariki Act)
     

Effect of the change – local, national, other sector agencies

The purpose for the change, and its potential effect, is not clear. Currently, it is to enable users to identify when such rights may exist, or to be able to assign rights within the NHI system.

This information should be held in the clinical record and it is hard to see how this information is relevant for ascertaining /confirming a consumer’s identity.

 

13. Delegation Rights – Advance Care Planning:

What change is wanted, why and why now

The advance care planning (ACP) movement is gathering considerable momentum. Information such as whether an advance care plan exists must be available to all DHBs so a person’s wishes for their final months and weeks of life are known.

ACP is the process of thinking about, talking about and planning for future health care and end of life care.

It involves an individual, family/whānau and health care professionals. ACP gives people the opportunity to develop and express their preferences for future care based on:

  • their values, beliefs, concerns, hopes & goals
  • a better understanding of their current & likely future health
  • the treatment and care options available.

Over 3000 health care workers have been trained in advanced care planning across the country.

DHBs have funded the Health Quality & Safety Commission (the Commission) to manage the national ACP programme until the end of December 2019. Further funding will be sought after that.  A five-year strategy for ACP is currently being implemented.

One of the work streams of the strategy is to develop and/or work with existing systems and processes to maximise DHBs’ investment in advance care planning. Currently, there is no one central way of knowing if someone has an advance care plan, or to obtain access to it.

Having an ACP alert on the NHI system would, for the first time create a consistent, nationwide way for clinicians to know that a patient has a plan and where that plan is kept.

While the inclusion of this data appears to have no relevance for identifying individuals, there may be some benefit to including this information so as to improve awareness of an individual’s end of life wishes and to ensure that those are upheld.

 

15. Height and Weight:

What change is wanted, why and why now

Height and weight are continuous measures. Health risk increases with increasing weight for height (or with very low weight). Children (and adults) do not become obese overnight. Weight generally increases gradually. By regularly monitoring height and weight and growth, we can identify abnormal growth (crossing centile lines), and intervene earlier to prevent excess weight gain.

Currently there is a disconnect between patient/client databases (eg. Maternity, Wellchild, and Patient Management Systems in primary care and secondary care) which means that there is no systematic way to track growth/weight change without manually copying height and weight (if available via a referral letter), which is subject to error. Ready access to up to date and historical height and weight information would enable identification of trends in a person’s weight journey and earlier intervention. Patients who are highly mobile are also vulnerable to ‘slipping through the cracks’ and not having their growth tracked over time.

Height, especially once adulthood is reached is an important identifier, hence why it is collected on passports.

Weight is an important health variable and change in weight can indicate a range of acute and chronic health issues including mental illness, stress, physical illness and /or infection, poor nutrition, energy imbalance or side effects of pharmacotherapy. Weight is also important for the correct dosing of some medications; ready access to a recent weight may be useful in some emergency situations for correct dosing.

Why now?

The Ministry of Health has released updated Clinical Weight Management Guidelines for both children and adults which recommend regular monitoring of height and weight, tracking change over time, and offering brief advice and support earlier rather than waiting till someone is obese to intervene.  Currently weight is not always routinely collected for people considered to be a ‘healthy weight’. Including height and weight on the NHI identifies these as important variables.

Additionally, child wellbeing is a new Government priority. Healthy growth is an important indicator of well children. An unhealthy weight is associated with physical and mental illness in children.

Effect of the change – local, national, other sector agencies

Individual: May reduce need for repeat weight and height to be collected by multiple providers. Enables opportunity for early identification of weight change, appropriate investigation and earlier identification of health issues, along with the opportunity for appropriate intervention.

National: Ability to monitor individual weight change at a population level to better target resources and interventions.

Primary and Secondary Care: Better continuity of care between providers.

The AWHC oppose inclusion of this information. It has absolutely no relevance in terms of identifying consumers. Its relevance is entirely clinical, and while height at maturity may be static, weight is not and may vary considerably for many people over a short period of time. This means that for some patients their NHI data would have to be altered regularly, possibly at almost every interaction with health service providers. There is no need for the NHI to include this sort of clinical information. It risks undermining the public’s current confidence and trust in the NHI as a unique identifier, and risks stigmatising people who are struggling with body weight and body image.

 

16 MedicAlert ID cross reference

What change is wanted, why and why now

The MedicAlert® Foundation (the Foundation) has a long history of supporting New Zealanders dating back to 1962. The Foundation has been on Schedule 2 of the HIPC 1994 for a number of years and is already classified as a Health Information Agency. With the increasing nationwide focus on connected health over recent years, the Foundation has received increasing requests that a Health Consumers MedicAlert® Member Identification Number, be added to the NHI.

Why now?

The Foundation holds vital information for its members for prevention of avoidable harm, which in addition to information such as Conditions and Medications also includes patient centric information such as Allergies, Warnings, Implanted devices, Written Advance Directives, EPOA, POA, and Emergency Action Plans.

Access to this information could be lifesaving and including the MedicAlert ID in the NHI would assist to facilitate wide access to the data through new technologies currently in development by Health Providers. The Foundation also notes that this recommendation is in line with the current NZ Health Strategy Roadmap to integrate wider health information into a more comprehensive care plan for the patient.

The AWHC fails to see how the addition of this information enhances the NHI’s purpose and utility as a unique identifier of consumers of health services in New Zealand. It seems more appropriate to include this information on the clinical

 

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