We ran our second annual Community Session on Friday 9 May 2025, hosted by Langimalie Research Centre in Manukau. Many thanks to all of our academic colleagues and the community groups that attended! Megan Fowlie wrote us an article to cover the events of the day:
COMPASS Community Session story
A drizzly Friday did little to deter the community groups and researchers gathered for our COMPASS Community Session on 9 May 2025.
Once again COMPASS was hosted by Dr Ofa Dewes MNZM, Director of Langimalie Research Centre, and her team in Manukau. The day was packed with insightful presentations and a generous flow of discussion focused on Pacific Peoples and brain health, rare and poorly understood conditions, and the power of research expertise, quality data, and lived experience.
After a warm welcome by Reverend Sela Havili from the Selwyn Foundation, Professor Barry Milne, Director of the Centre of Methods and Policy Application in the Social Sciences (COMPASS, www.compass.auckland.ac.nz), Waipapa Taumata Rau | University of Auckland, introduced the Centre’s activities to the clinicians, practitioners, community groups, policymakers, and people with lived experience joining online and attending the talanoa face-to-face.
At any one time, COMPASS is involved with up to ten different programmes of work using its expert proficiencies of survey design, analysis of whole population data, and simulation modelling.
Barry reinforced the Centre’s role in undertaking quantitative research for better strategic decision-making and its remit of partnership. More and more, partnerships are being formed with community groups advocating for greater attention to areas in which minority communities are presently underserved.
COMPASS’s community partnerships provide mutual benefits by helping to establish community advisory teams, creating avenues for varied and fascinating projects, and increasing sense-making and critical real-world interpretation of data.
Showcasing the power of data and community partnership
During the Community Session, four presenters shared their work: Dr Ofa Dewes MNZM, Dr Natalia Boven, Dr Lisa Underwood, and Professor Barry Milne.
Quality data is a huge part of their research. They all draw on world-leading datasets integrating health, employment, demographic, migration, and justice data through StatsNZ, as well as data collected through NGO and community organisations. Even before research begins, COMPASS researchers search within New Zealand and across the world to seek out data sources that can offer insights into small or overlooked communities.
Leading the day’s presentations was Ofa Dewes, who presented on the building blocks to brain health for Pacific Peoples. Ofa acknowledged Zanetta Toomata, a Pacific researcher presently working on post-doctoral studies in the US, for her key role in the study.
Ofa and Zanetta explored the prevalence of stroke, traumatic brain injury, dementia, and anxiety for Tuvaluan, Tongan, and Tokelauan older people living in urban Aotearoa, and culturally-driven interventions integrated and sustained by service providers and family.
Their study, using the StatsNZ Integrated Data Infrastructure (IDI), is the first to estimate the prevalence of the four brain-related conditions in these Pacific populations, to uncover ethnic-specific differences around access to services, family and social support, and approaches to wellbeing. Ofa says that this work highlights the role of research in identifying factors affecting wellness and wellbeing that may differ among Pacific ethnic groups.
In the next presentation, Natalia Boven highlighted research funded by the Health Research Council of New Zealand on people living with multiple sclerosis (MS). Through her work using hospitalisation discharge information from the IDI, Natalia identified nearly 5,000 people who had most likely been diagnosed with MS. She says that identifying the large cohort was a real success. Demographics were in line with earlier studies, and she was able to track pharmaceuticals dispensed to these people and to show that dispensing patterns were markedly different for people of different ethnicities, and income and education levels.
The presentation generated a lot of discussion about the national and international trends in MS and the barriers inherent in the complex processes and strict criteria for MS diagnosis and treatment access. Natalia’s research has been extended through a contract with Multiple Sclerosis New Zealand, to understand access to allied health care, disability support, and benefits at national and local levels.
Next, Barry Milne presented research using longitudinal data from the New Zealand Health Survey, to assess trends in and predictors of mental health in Pacific Peoples. Barry remarked that the tyranny of small datasets means it can be very challenging to achieve statistically meaningful results for small populations; a challenge he believes could be cost-effectively overcome with strategic oversampling.
Lisa Underwood, the final presenter, has been working across a number of projects including research with rare disorder communities, discovering data on health carers, and shedding light on the world of sex workers.
I find it varied and fascinating working on many projects, looking at very small groups of people who may be in unusual or stigmatising situations to see what is happening in their lives.
Lisa says a key to COMPASS’s ongoing success will be working more strategically alongside community groups.
Within the community are the ‘real world’ experts who are living with conditions. They know what needs to change. On the other side are COMPASS and Langimalie researchers, whose expertise sits in undertaking robust research, with access to a lot of administrative datasets and the backing of academic infrastructure. Our key strengths can be used together to shape shared goals, strategically identify and tackle priorities, and make the changes we want to see for people.
The day’s event concluded with an animated Q&A discussion with “experts wearing many hats”:
- Dr Anae Neru Leavasa, a specialist general practitioner and clinical director for The Cause Collective
- Rich Easton, CEO of the Neurological Foundation of New Zealand and Chair of the Neurological Alliance
- Greer Pugh, a first-year PhD candidate in physiology. Her studies focus on understanding the mechanism and pathophysiology of Postural Orthostatic Tachycardia Syndrome (POTS) – a common but underdiagnosed condition primarily affecting young women
- Dr Natalie Gauld ONZM, a pharmacist, and a research advisor and best practice advocate at Motor Neurone Disease NZ, with honorary roles at Waipapa Taumata Rau | University of Auckland.
Barry summed up the big issues brought out: access to care, awareness of rare and poorly understood conditions by clinicians, the value and understanding of lived experience, partnerships in research with the ideal of early involvement, and beginning with a mindset to shape research for policy change. He hopes that the COMPASS Community Session will become a regular annual event for connecting, sharing, and learning.
Megan Fowlie
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