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COUNTING FOR NOTHING: UNDERSTANDING THE ISSUES IN MONITORING DISPARITIES IN HEALTH.

INTRODUCTION(2)

Disparities between New Zealanders, especially Maori and non-Maori, have become an area of significant policy focus. It is largely academic whether interest has sharpened because of the Treaty of Waitangi, a commitment to equity and social justice, the government priority to reduce disparities, or indeed combinations of these. A far more pressing issue is the quality of data to support policy development, monitor disparities and inform interventions.

While disparities are always of concern they are particularly poignant in health as, at the extreme, they represent differential access to the benefits and privileges of our society, reduced ability to contribute to future generations and premature death.

Most policy makers are aware of the challenges faced in the classification of ethnicity, which underpins the measurement of disparities. Many are also aware that changes in the ethnicity question in the 1996 Census and the notification of births and deaths have led to inconsistencies which undermine the health time series. However, few options have been proposed for monitoring trends in health disparities between Maori and non-Maori during the decade of the 1990s.

The purpose of this paper is to background these issues, describe recent changes and their relative influence, and to reiterate the need to monitor disparities in health during the 1990s despite these challenges.

BACKGROUND

Fundamental to this discussion is the definition of who is Maori, and who decides on the definition. The word "Maori" means normal, usual and ordinary (Williams 1992:179). It is an adjective used to describe things in their natural state. Broughton (1993:506) notes:
 In this way, the word "Maori" was used to describe the indigenous people of
 the land, that is, to refer to the ordinary inhabitants of Aotearoa.


However, while "Maori" began as a definition which accepted tangata whenua status as normal, the early government definition of Maori was "persons greater than half Maori blood" and Maori-European "half-caste" living as Maori, i.e. "living as members of Maori tribes", and it later evolved to "persons of half or more Maori blood" (Department of Statistics 1988:44-45).

Those reviewing Maori population growth using fertility, mortality and intermarriage patterns were concerned that more people were identifying themselves as Maori than was predicted by demographic trends. The Review Committee on Ethnic Statistics reflected that even in the 1926 Census a large proportion of Maori "overstated their degree of Maori blood" and that many people who were Maori by self-definition, but who also had significant non-Maori ancestry, stated that they were one-half Maori or more.
 Thus, this suggests that since at least the turn of the century, the
 biological definition of Maori (i.e. half or more Maori blood) has not been
 interpreted as intended by a considerable proportion of the Maori
 population. (Department of Statistics 1988:46)


So despite government definitions, Maori reclaimed the ability to name ourselves as Maori. In the 1970s, Maori expressed a desire for statistics to be more inclusive in counting who is Maori. The Maori Affairs Amendment Act (1974) broadened the definition of Maori to include all descendants of Maori. At the same time, the Department of Statistics began considering concepts of ethnicity and cultural affiliation. Based on the way people define themselves and the group(s) to which they feel most closely aligned, these concepts reflected Maori practice (Department of Statistics 1993). Ethnic group has been defined as follows:
 The term ethnic group has a wide meaning. It is not the same as
 nationality, race or place of birth. Ethnic groups are.., people who have
 culture, language, history or traditions in common. These people have a
 "sense of belonging" to the group, which may not be based on birth. It is
 possible to belong to more than one ethnic group. At different times of
 their life people may wish to identify with other groups. (NZHIS and
 Ministry of Health 1996)


The subsequent change of definition of Maori in the census, from one based on descent prior to 1986 to one of cultural affiliation based on self identity from 1986, could be seen as a realignment of official statistics to a Maori reality.

DISPARITIES IN HEALTH

Commentary on health outcomes is usually based on consideration of rates. This involves knowledge of the frequency of events within a certain population at or over a specified period of time. For example, lung cancer mortality among Maori women in 1996 would be expressed as the number of Maori women dying of lung cancer in that year (the numerator) derived from the health and vitals datasets, as a proportion of the number of Maori women in the population in 1996 (the denominator) derived from the census. This underlines the importance of understanding the derivation of the various data, how they are collected, the quality of data and the impact of any changes to these over time.

Denominators

Data for denominators are usually derived from census information. There are three key issues in census data:

* Firstly, the change in 1986 from a biological, descent-based definition to one based on ethnicity.

* Secondly, with this change came the opportunity to capture multiple ethnicities and distinguish between those who give Maori as their only ethnic group (sole Maori) and those who give Maori as only one of their ethnic groups (mixed Maori). Together these two make up the Maori ethnic group (MEG).

* Thirdly, there have been changes to the question seeking to establish the Maori population in the last five censuses. In each of the last three censuses a different ethnicity question has been used.

In 1986, the question simply asked: "What is your ethnic origin? Tick the box or boxes which apply to you." (See Figure 1.)

[Figure 1 ILLUSTRATION OMITTED]

In 1991, the question was changed, as it was believed that the word "origin" was too closely aligned with the concept of ancestry. It used "Which ethnic group do you belong to?" with the same rider. (See Figure 2.)

[Figure 2 ILLUSTRATION OMITTED]

In 1996, there was a significant change to the wording of the question (in line with all questions in that census) and more categories were given. (See Figure 3.)

[Figure 3 ILLUSTRATION OMITTED]

In the 1996 Census, more New Zealanders, including Maori, gave multi-ethnic responses. Subsequent research has shown that the wording of the 1996 question, and especially the extra categories for "other European", likely encouraged multiple responses. Further, these responses were more likely to be based on ancestry than were responses to the 1991 Census ethnicity question (ACNeilsen 1999). Consequently, the 1996 "sole Maori" group is significantly smaller than expected and the "Maori ethnic" group larger. It is likely that some who gave a "sole Maori" response to the 1991 question gave an ancestry-based multi-ethnic response to the 1996 question. Furthermore, some people of Maori ancestry who previously had not identified Maori ethnicity, seem to have been encouraged by the 1996 question to add Maori to their ethnicities.

So, four Maori populations have been described by census data in the latter half of this century:

* half or more Maori blood prior to 1986;

* sole Maori ethnicity (those who identify Maori as their only ethnicity) from 1986;

* the Maori ethnic group from 1991 (those who state Maori as one of their ethnic groups and includes sole Maori);

* the Maori ancestry group derived from a separate census question, "Are you descended from a NZ Maori?" in 1991 and 1996, and from a similar question in 1976 and 1981. In 1971, a descent population was calculated from questions on biological origins. There was no ancestry question in 1986.

The population of Maori in censuses between 1951 and 1991 seemed to follow an expected population growth profile. This would support the hypothesis that the Maori population captured by the biological definition prior to 1986 was similar at least in size to the "sole Maori" population captured by ethnicity questions in 1986 and 1991 (see Figure 4).

[Figure 4 ILLUSTRATION OMITTED]

Figure 4 also illustrates that in denominator terms, a time series analysis could continue up until 1986 using the "half or more Maori" biological definition, then using the "sole Maori" ethnicity definition in 1986 and 1991. However, it also demonstrates that none of the Maori populations collected in the 1996 Census would provide an obvious match. Using the smaller 1996 sole Maori group as the denominator would increase disparities and using the larger 1996 "Maori ethnic" group would decrease disparities. (And you can do all this without leaving your desk!)

Government departments have responded to this break in the denominator time series by publishing Maori health trend data in different ways. From 1996 onwards, the Ministry of Health has used the Maori ethnic group as the denominator in its publications. This change to a larger population in the denominator resulted in a 30% reduction in Maori hospitalisation rates since there was no corresponding change in the numerators and targets were reduced accordingly (Ministry of Health 1998:9). Te Puni Kokiri, on the other hand, used the 1996 sole Maori population resulting in an apparent increase in Maori hospitalisations (Te Puni Kokiri 1998:21).

Even when using the same numerator data, understanding the implications of using sole Maori versus the Maori ethnic group as the denominator is important (Pomare et al. 1995:172). This is especially so when giving policy advice and can be illustrated by the following example. If we compare the first admission rates for Maori and non-Maori women with psychiatric disorders between the years 1991-1993 (see Figure 5), there is a significant disparity using the sole Maori as the denominator (RR=1.5-2). By using the larger Maori ethnic group as the denominator, this disparity is sizeably reduced (RR=1-1.5).

Given that psychiatric re-admissions amongst Maori women are much more common than for non-Maori (Pomare et al. 1995:119), a disparate first admission rate would highlight issues such as a higher prevalence of disorders and the need for better recognition and early intervention. However if first admission rates differ little between Maori and non-Maori, high re-admission rates would lead one to recommend a review of service issues during first admission and follow-up. Changing the denominator therefore can have an important influence on the policy advice and subsequent interventions.

[Figure 5 ILLUSTRATION OMITTED]

Numerators Constructed from Morbidity Data

Morbidity data are usually derived from hospital discharge data, although there is both the opportunity and the need to gather data in primary care. There have been numerous reviews of the quality of ethnicity data in hospitals (Pasupati et al. 1980, Kilgour and Keefe 1992, Harris et al. 1997), in the Auckland Regional Coronary or Stroke Study (ARCOS) (Priest and Jackson 1994), and in registers such as the abortion register (Sceats 1985). Almost all continue to demonstrate that Maori are undercounted in hospitals. Work in the Central Regional Health Authority region in recent years estimated the level of undercounting at 25-30% (Harris et a1.1997:25). The ARCOS study showed no overall effect of Maori undercounting. This was because the undercounting of Maori was proportional to the misclassification of some non-Maori as Maori (Priest and Jackson 1994).

In hospitals in the early 1980s, there was a move from descent (half or more Maori ancestry) to a definition based on the concept of ethnicity. From July 1996, hospitals were supposed to be able to allow clients to identify with more than one ethnic group as in the census. However, in hospital discharge data since 1997 only 7.4% of all discharges were recorded with more than one ethnicity, which implies that the multiple ethnicities policy has yet to be operationalised consistently (Statistics NZ 1999a:26).

Furthermore, the proportion of total admissions recorded as Maori has not changed since 1996. Statistics New Zealand conducted a random check of the admission forms used by several hospitals early in 1999 and found that the standard question used in the 1996 Census had not in fact been implemented by many hospitals nationwide (Statistics NZ 1999a:23). There is some evidence that the quality of ethnicity data in hospitals may be worsening (Moala 1999).

Numerators Constructed from Mortality Data

It has long been known that official mortality datasets under-enumerate Maori (Pomare 1981, Graham et al. 1989, Tipene-Leach et al. 1991).

In mortality data, ethnicity is usually completed by the funeral director, although families register births and are legally able to register deaths. Prior to 1995, ethnicity was only collected if the deceased was a Maori or Pacific Island person. At that time also, it was based on descent (half or more Maori ancestry) of the parents of the deceased. There has been well-documented under-reporting of Maori deaths by about 82% (Graham et al. 1989:124), with a north-south gradient (South Island Maori being less likely to be counted as Maori) and an age gradient where young Maori are less likely to be counted as Maori in death (Robson 1998 unpublished data). The main reason for the undercounting was missing data on the registration form (Graham et al. 1989:125). A 1993 study of Wellington funeral directors found that 30% of funeral directors never filled in the ethnicity question (Bashford et al. 1993:19).

In respect of mortality data, three significant changes from the review of the Births, Deaths and Marriages (BDM) Act became effective in September 1995. Firstly, there was a change from collecting the descent of the parents of the deceased to identifying the ethnicity of the deceased. Secondly, it is now required to record the ethnicity of all deceased, not just Maori and Pacific peoples as previously, and thirdly, there was a move to a multiple options recording of ethnicity in line with the 1996 Census question. A follow-up study of Wellington funeral directors in 1998 found that all funeral directors are now filling in the ethnicity question (Andrews et al. 1998).

This change in recording ethnicity in death led to an 87% increase in the total number of Maori deaths registered in 1996 when compared with the 1994 total recorded using half or-more-blood criteria (Statistics NZ 1999a:24). Review of this effect by age group confirms the age gradient in undercounting noted previously (see Figure 6). Ninety-one per cent of Maori deaths registered in 1996 were recorded with a single ethnicity (i.e. as sole Maori). However, in the 1996 Census only 52% of Maori answered with a single response to a self-administered ethnicity question. While sole Maori are more likely to be older than mixed Maori, and therefore have higher mortality, it is unlikely that they would make up over 90% of the Maori deaths consistently in 1996 and 1997. It implies that in mortality data, as in morbidity data, the ethnicity question is largely being applied in a single-option format.

[Figure 6 ILLUSTRATION OMITTED]

Despite the large increase in recorded Maori deaths following the change to the BDM Act, the total Maori ethnic group deaths may still be under-reported. For example, if a member of the Maori ethnic group is asked their ethnicity in a way which allows only a single-option response, those who identify Maori as their only ethnicity will probably still answer Maori. However, those who note Maori as only one of their ethnic groups could answer in different ways. Some may choose Maori but others won't. So a single-option Maori ethnic group is likely to contain most, if not all, sole Maori, but only a proportion of Maori with multiple ethnicities.

Which Maori Population?

There is some debate as to which Maori population should be used as the standard for study and commentary. Essentially, the debate is between an ancestry-based group or one based on ethnicity. The ancestry group is important for constitutional reasons, in that only descendants of Maori may enrol in a Maori electorate or take a claim to the Waitangi Tribunal. However, lived social reality and cultural affiliation have been found to be more closely aligned to a variety of outcomes, including health (Kilgour and Keefe 1992).

Within ethnicity there is also debate as to whether the "Maori ethnic group" or "sole Maori" should become the standard. There is evidence that sole Maori is particularly important in analysis of disparities (Reid 1997). Certainly the members of the sole Maori population are more deprived than those Maori with multiple ethnicities (mixed Maori) when analysed by NZDep96, an area-based measure of deprivation (Department of Public Health 2000).

Studies have demonstrated increasing mortality and morbidity with increasing deprivation as measured by NZDep96 (Department of Public Health 2000). It is likely, therefore, that the health status of "sole Maori" is poorer and more vulnerable than that of mixed Maori. For this reason we promote the sole Maori population as the most appropriate primary focus when monitoring disparities between Maori and non-Maori.

However, it is important to recognise that if both numerator and denominator datasets applied the same question, administered it in the same way and were committed to obtaining quality data, then the health status of both sole Maori and the Maori ethnic group could be analysed readily. At that point, users of the data would be in a better position to understand the strengths and weaknesses of all the ethnicity-based Maori populations and the diversity of Maori realities (Durie 1995). The two case studies, below, illustrate some of the issues in this area.

Case Study 1: Infant Deaths

Under-reporting of the number of deaths of Maori infants (under 1 year old) has been demonstrated by Statistics New Zealand (Brown 1983). From 1975, each infant death registration form was matched with the corresponding birth registration form. Birth registration forms are considered to be a more accurate source of ethnicity information than death registration forms as a parent completes the birth registration. If an infant death registration did not record the child as Maori but the birth registration did, the death record was amended to agree with the birth record. In 1984, 95.5% of infant deaths were matched with their corresponding birth registration, and 67 infant deaths had their ethnic classification changed from non-Maori to Maori (Pomare and de Boer 1988). These 67 infant deaths represented 54% of all Maori infant deaths for the year 1984. This confirmed significant under-reporting of Maori in the death registrations in this age group. It also supported other evidence of under-reporting of Maori ethnicity in death registrations at other ages. Routine matching of infant death registrations with their birth registration was discontinued at the end of 1997 (Fraser, personal communication 1999).

In September 1995, the ethnicity question in birth certificates changed from a focus on ancestry to that of ethnicity using the same question as the 1996 Census. New Zealand children born since then have their birth ethnicity registered by their parent(s), who will also fill in their census forms until the infants are young adults - i.e. both forms are completed by the same proxy. However the changes also allowed parents up to two years to register the birth of a child. This creates a number of challenges, including denominator problems from unregistered births and difficulty matching an infant death record if the birth has not been previously registered.

A study to match 1998-1999 infant death registrations with their birth registrations is currently underway (Wilson, personal communication 2000). This will provide information on the current error rate in ethnicity classification on death registrations. The error relating to data collection processes in death certification could then be assessed, both in terms of sole/mixed classification and in terms of Maori/non-Maori classification. Maori infants are currently more likely to have mixed ethnicity than any other age group of Maori, so this study will provide some information on the likely error rates in other age groups.

Case Study 2: Life Expectancy

Changes in both numerators and denominators have impacted on our ability to report on changes in Maori health status and possible relationships with policy. This is obvious in data on life expectancy at birth (LEaB) (see Figure 8).

[Figure 8 ILLUSTRATION OMITTED]

Figure 8 demonstrates a number of issues. Firstly, LEaB has been increasing for nonMaori in the second half of this century and for Maori New Zealanders at least up until the 1990s. However, the under-reporting of Maori in death will have inflated Maori life expectancy and slightly deflated that of non-Maori. Secondly, the gap between Maori and non-Maori LEaB was narrowing until 1990.

Prior to 1986 the "half or more Maori ancestry" population and those deaths of people with "half or more Maori ancestry" were used to calculate Maori life expectancy. In the 1985-1987 life tables, Maori LEaB was calculated using the sole Maori population from the 1986 Census together with deaths recorded as half or more Maori ancestry. In the 1990-1992 life tables, instead of sole Maori, the larger Maori ethnic group from the 1991 Census was used as the base population. Deaths were still being recorded using the biological definition with significant known under-reporting. For the first time, all deaths with any degree of Maori ancestry were included.
 The 1992 series included those cases where both parents had less than
 quarter of Maori blood, or where one parent had less than one-quarter Maori
 blood and the other parent was non-Maori. (Statistics NZ 1994:10)


The 1990-1992 life expectancy calculation therefore represents a methodological disruption to the life expectancy time series. While attempting to capture the life expectancy of the Maori ethnic group, this change introduced two new parameters into the life expectancy time series: firstly, a larger base population and secondly the inclusion of an additional 300-plus deaths annually into the Maori mortality calculations.

Life expectancy in 1990-1992 is important in disparities analysis because it represents one of the very few times when the gap between LEaB of Maori and non-Maori failed to close (Pomare et al. 1995:36). When LEaB was recalculated for 1990-92 using the same method as in 1985-1987 (i.e. using the sole Maori population and deaths of people classified as "half or more Maori ancestry") the Maori life expectancy at birth increased slightly from those published by Statistics NZ, from 73.0 to 73.9 for Maori women and from 68.0 to 68.6 for Maori men (Khawaja, personal communication 1999). However these small increments did not alter the finding that, independent of methodological changes, the gap between Maori and non-Maori LEaB failed to close at this time in New Zealand history.

In the 1995-1997 life tables, the Maori ethnic group was used together with the new numbers of deaths recorded as Maori. The greater number of Maori deaths served to decrease Maori life expectancy significantly, while using the larger Maori ethnic group captured by the 1996 Census question would have worked in the opposite direction, hence reducing somewhat the impact of the numerator change.

Monitoring Disparities in Health During the 1990s

The 1990s are an important decade in our history and in our health record. Health data from this period may record some of the impact of our economic reforms and the ongoing reform of sectors such as health, welfare and housing. It is inadequate and irresponsible to record this period in New Zealand history as merely a break in the health time series.

Statistics NZ are reviewing the ethnicity question for the 2001 Census. A slightly modified version of the 1991 question was used in the dress rehearsal for the 2001 Census (Nolan, personal communication 1999) (See Figure 9). Intercensal estimates of the sole Maori population from the 1991 Census to December 1995 can be extended up until December 2000, giving a relatively consistent denominator. While we will review where possible differences in mortality between sole Maori and mixed Maori, we are committed at this stage to using sole Maori as our primary denominator population for the review of disparities during the 1990s.

[Figure 9 ILLUSTRATION OMITTED]

With respect to numerator data, a relatively stable set of data is available on Maori hospitalisations during the last two decades. While this data has limitations, especially that it seems likely to undercount Maori hospitalisations, there is some comfort in its consistency. This numerator consistency, when teamed with a consistent denominator (1991 sole Maori estimates), will strengthen our ability to monitor trends.

For mortality data, we propose to use the sole Maori population projections calculated from the 1991 Census as the denominator. To obtain trends in Maori mortality during this period, we are reviewing a method to weight up the Maori deaths prior to September 1995. This weighting will be in proportion to the increases in each age group that resulted from the change to mandatory reporting of ethnicity in death registrations (see Figure 6).

Information from reviewing ethnicity in infant deaths compared with their corresponding birth certificates should provide a conservative estimate of the proportion of Maori deaths being "sole Maori" compared with the 92% noted as "sole Maori" in death registration data. This will inform our decision making about the use of the "sole Maori" denominator. We are currently testing aspects of this method with different datasets and would welcome feedback and peer review.

CONCLUSION

This paper reviews the issues surrounding the classification of ethnicity, which underpins our ability to monitor disparities between Maori and non-Maori as the twentieth century closed. It demonstrates a number of challenges which face us:

* the need for an ethnicity question which captures Maori reality;

* the need for an ethnicity question which is consistent over time;

* the need for an ethnicity question which is able to be operationalised in the various numerator and denominator datasets;

* the need for data collectors who are trained in the task of ethnicity collection -- what, why, how;

* the need for quality audits of ethnicity data; and,

* the need for a policy environment which demands and resources quality data.

To date, we have been hampered with data of less than optimum quality, which may have impeded our ability to offer good policy advice and initiate appropriate interventions. We have both short-term and long-term needs. It is imperative to throw some light on disparities during the 1990s. The reform of the state sector during the last decade and a half of the past century introduced new influences on health outcomes in New Zealand. These included high levels of unemployment, uneven access to services, including health, as well as disparate levels of poverty and deprivation (Statistics NZ 1999b). These are elements known to affect health outcomes (National Health Committee 1998). Having the ability to monitor health outcomes, especially disparities between Maori and non-Maori New Zealanders, is crucial in the decades following the economic reforms. Analyses of this period may yield important information to inform policies and practice in the future. Furthermore, it is vital not to establish a new time series that is based on flawed questions, or questions that are difficult to operationalise. The 1991 Census ethnicity question has been trialled and the resultant data used. It provides a known link with past populations whereas the 1996 question has aptly demonstrated that caution needs to be exercised when contemplating change.

We are reviewing a method using intercensal calculations based on the 1991 Census as the denominator and using numerator data in mortality weighted to account for Maori erroneously recorded as non-Maori in deaths prior to September 1995. In the long term, we would promote that the modified 1991 Census question be used again in 2001 and 2006, and that a concerted effort be made by all policy advisers, purchasers and providers of data to operationalise this question in health and vitals datasets and monitor data quality.

Some authors in health note the limitations of conventional measures like mortality and morbidity (Durie 1994:29), not the least being that they are measures of death and illness rather than health. However, others believe they are both useful and underline the fundamental importance of being counted (Pomare et al. 1995:41).

Being counted is an acknowledgement of both existence and value. It means that one matters. It is the hallmark of Treaty promise (Orange 1987:257). History will judge our commitment to the Treaty in part by our ability to ensure that people are counted, that disparities are acknowledged and appropriate policies are put in place, especially those which eliminate disparities between Maori and non-Maori, a solemn commitment by the Treaty of Waitangi.

(1) Te Ropu Rangahau Hauora a Eru Pomare (Eru Pomare Maori Health Research Centre), Wellington School of Medicine, PO Box 7343, Wellington South, Aotearoa; e-mail hauora@wnmeds.ac.nz

(2) This research was funded by the Health Research Council of New Zealand. The authors wish to thank Fiona Cram and staff at Statistics New Zealand and Te Puni Kokiri for their valuable comments on earlier drafts.

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Te Ropu Rangahau Hauora a Eru Pomare Eru Pomare Maori Health Research Centre Wellington School of Medicine(1)
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Publication:Social Policy Journal of New Zealand
Geographic Code:8NEWZ
Date:Jul 1, 2000
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