Maori perspectives and positions on perinatal data collection

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Maori perspectives and positions on perinatal
data collection

• Stephanie Palmer, (Ngati Porou)
• Director, Tumana Research

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PMMRCMain GoalTo reduce the number of
preventable perinatal and maternal deaths
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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

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PMMRC Key Issues for Maori increasing rates

• increasing rates for all groups, especially Maori
• Source NZHIS Maternal
  Newborn Information 2000-2003

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PMMRCKey issues for Maori stillbirth

• roughly 70 of perinatal deaths are stillbirths
• increasing for all groups except European
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• 
  
• 
  Source NZHIS Maternal Newborn Information,
  2000-2003

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PMMRCKey issues for Maori 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 whanau
  who are most deprived

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PMMRCKey issues for Maori causes contd

• quality of care?
• Perinatal Mortality Rates by DHB 200-2003
• Source Maternal Newborn INformation 2002,
  2003, 2006

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PMMRCKey issues for Maori causes contd

• 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

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PMMRCLikely benefits of participation for Maori

• improved knowledge-base on the biological/physiolo
  gical 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
  

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PMMRCLikely costs of participation for Maori

• 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
  

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PMMRCLikely costs of participation for Maori
contd

• 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 whanau-centred rituals and rites
• inability to protect nga taonga tuku iho -
  tikanga, whakapapa korero, kawai tupuna, the
  cultural capital of future generations
• the tikanga around birth and death should be
  driven by whanau 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

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PMMRC Current initiatives for Maori

• Panui for Maori whanau
• objectives of PMMRC
• matauranga Maori 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 nga taonga tuku
  iho within PMMRC
• mechanisms to retain ownership, authority,
  control and guardianship over Maori 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

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PMMRCMaori perspectives issues whanau ora