Maaori Responsive Research Perspectives from Counties Manukau

Subtitles Why the ‘who’ (your participants) are as important as the ‘how’ (or its not just about: are you taking blood samples and what will happen to them)

We need to think about… 1.Why you need to get your research approved by the Maaori Research Review Committee 2.Importance of context information - who 3.Research content - how

Process The CM Maaori Research Review Committee (MRRC): Meets monthly to review research applications Applications need to be in 6 days prior to allow time for processing and pre-meeting review Applicants may be asked to clarify points or give further information by letter MRRC try to make it a constructive process, not a tick box or a barrier Usually get a response the following week

Need MRRC approval? Role of MRRC is to provide an institutional response to the need for Maaori consultation on all research that is undertaken under the auspices and within the services provided by Counties Maunkau DHB Required under the NZ National Ethic’s Committee process for all health research conducted in Aotearoa New Zealand

CM MRRC Membership Kaumatua CM MMRC Chair/Secretary, TKO PM Community Advisor (1-2) Mana whenua (1-2) Clinical advisor (1-2)

Context Outlining the context and the relevance of the research to Maaori (e.g. data about incidence of research issue for Maaori) helps to determine the scope of the consultation required

Example A new drug for treating gout How common is gout in Maaori? What is known about outcomes for Maaori who do have gout (are there disparities)? Is there any Counties specific data? But also is this drug specific to the disease process of gout or is it an anti-inflammatory that might be useful for other arthritis?

Content: How many Maaori? How many Maaori do you expect to be recruiting? What do you know about the ethnicity mix of population you are drawing participants from? e.g. 32% of Stage 4 renal patients in 05/06 seen in CMDHB were Maaori If you were the researcher, how would you try to ensure that at least 10 of your 30 patients were Maaori?

Content: Issues pertaining to ethnicity Collecting ethnicity – NZ Health and Disability Sector standards (MoH website) What might ‘being Maaori’ mean in relation to this study Engaging whaanau Wairua, whaanau and mental health Te Reo Maaori

Content: Being Maaori in CM?

Subtitles Why the ‘who’ (your participants) are as important as the ‘how’ (or its not just about: are you taking blood samples and what will happen to them)

Cultural implications of the methodology A study which involves interviewing kuia and kaumatua in their homes, about living with diabetes Vs Clinical measurements in a routine clinic appointment for new antihypertensive

Cultural appropriateness of the tools A UK tool for assessing language acquisition and development to be used in study which may involve children & whaanau immersed in Koohanga Reo ?

Content: Genetic analysis Ensure participants are fully informed of the consequences of consenting to genetic analysis (given collective implications) – we like to see the Participant Information Sheet reassurance that samples will be destroyed on completion of the research if not consented to be kept for further studies

Diversity of Maaori perspectives E.g. Xenotransplantation: an area where generically, there is a diversity of opinion of Maaori participation : There is no tikanga and so Maaori cannot be involved in this type of research until such tikanga is developed Maaori have the right to benefit from such technological advancements both as individuals, and collectives “Conservative”“Liberal”

Dissemination Reciprocity – those taking part should have opportunity to get results Sending a copy to the Maaori Research Review Committee is not dissemination to the Maaori community! We need to work together on better ways to get information back to the community

Maaori Research Review – added value Promoting research processes (planning, recruitment, consent processes, interviews, interventions, dissemination of results) that are culturally responsive Ensure the potential for equitable Maaori participation The Goal Research that contributes to a Quality System of health care that ensures equitable access to (based on need) and utilisation of services by Maori