Māori perspectives and positions on perinatal data collection

1. Māori perspectives and positions on perinatal data collection Stephanie Palmer, (Ngāti Porou) Director, Tūmana Research

2. PMMRCMain GoalTo reduce the number of preventable perinatal and maternal deaths

3. PMMRCCurrent directions and achievements • to establish a process and system for the collection of data on perinatal deaths • to develop and pilot Rapid Reporting Forms • to train DHB co-ordinators

4. PMMRC Key Issues for Māori – increasing rates • increasing rates for all groups, especially Māori Source: NZHIS Maternal & Newborn Information 2000-2003

5. PMMRCKey issues for Māori – stillbirth • roughly 70% of perinatal deaths are stillbirths • increasing for all groups except European Source: NZHIS Maternal & Newborn Information, 2000-2003

6. PMMRCKey issues for Māori – causes • biological + social + cultural + environmental + behavioural + economic • integrated, multi-variate, lifespan models to explain relationships between variables • maternal age and socio-economic status are known risk factors for stillbirth in NZ • the vast majority of stillbirths amongst whānau who are most deprived

7. PMMRCKey issues for Māori – causes cont’d • quality of care? Perinatal Mortality Rates by DHB 200-2003 Source: Maternal & Newborn INformation 2002, 2003, 2006

8. PMMRCKey issues for Māori – causes cont’d • in 2001, 72% of perinatal deaths were due to “conditions originating in the perinatal period” and 22% were due to “congenital abnormalities” (MoH, 2005) • of 387 fetal deaths in 2001, 54% were “unexplained” (MoH, 2005) • between 1980-1999, the late fetal death rate fell by 49% • 79% decrease in intrapartum deaths • 70% decrease in congenital anomalities • no decrease in the number of deaths from unspecified conditions (Craig et al, 2004) • call for post-mortems to explain the unspecified deaths

9. PMMRCLikely benefits of participation for Māori • improved knowledge-base on the biological/physiological causes of perinatal mortality • fewer fetal deaths from “unspecified” (uninvestigated) causes • improvements in perinatal care • screening for previously “unspecified” causes • option to terminate? • more obstetric care - early intervention/treatment to prevent death (drugs, technology, monitoring) • expansion of the perinatal mortality data set with opportunities to explore relationships between social, biological, environmental factors

10. PMMRCLikely costs of participation for Māori • more data collection • pressure for consent to post-mortem • separation, photos, invasive techniques • tissue samples, tissue/gene studies • tissue storage/banking (for many years) • likelihood of further unspecified studies, sharing of data/tissues, deidentification • inadequacy of informed consent, consultation procedures • lack of confidence in monitoring, audit, recording, tracking, reporting and data collection systems • normalisation of a medicalised approach to life and death, the globalised identity • focus on the physiological causes of death instead of the experience of death • focus on individual rather than collective needs

11. PMMRCLikely costs of participation for Māori – cont’d • dismantling of core cultural experiences essential to the formation of identity • capacity to deal with birth and death, including miscarriage, stillbirth and the loss of a baby • transmission of whānau-centred rituals and rites • inability to protect ngā tāonga tuku iho - tikanga, whakapapa kōrero, kāwai tūpuna, the cultural capital of future generations • the tikanga around birth and death should be driven by whānau values and beliefs • a general disregard for cultural values - mana, tapu, mauri, whakapapa, whakawhanaungatanga • the continual fragmentation of te whare tangata • few opportunities to contribute to the repository of cultural knowledge, oppression of cultural identity and experience by dominant values and views • the pursuit of knowledge simply because know-how is valued more than know why • a know-why approach enables discussion and debate about the need for knowledge within the context of its implications for culture, human relationships and future generations

12. PMMRC Current initiatives for Māori • Pānui for Māori whānau • objectives of PMMRC • mātauranga Māori perspectives and positions • post-mortem techniques and procedures • opportunity to opt-out • as default position? • few have courage to sign out of process • will opt-out in otherways • Kaitiakitanga • establishment of a kaitiaki group • the protection and promotion of ngā tāonga tuku iho within PMMRC • mechanisms to retain ownership, authority, control and guardianship over Māori health resources – data, tissues and genes • involvement in decision-making about collection, analysis, storage, ownership, access, use and reporting • possible collaboration with established groups – eg cervical cancer registry

13. PMMRCMāori perspectives & issues – whānau ora