Patient-Centred
We aim to actively collaborate with our Māori and Pasifika communities to ensure that their voices are heard and that mātauranga is shared
Why Local?
Local research in Aotearoa is crucial because we have a distinct population with distinct needs. We cannot wait for the rest of the world to take action, we need solutions for our people now. Our population was highly vaccinated prior to mass infection – another distinct characteristic which is pivotal to the global puzzle.
Additionally, with information around COVID and COVID-19 safety being abandoned and falling out of the news cycles, there is an unmet demand here for information and expertise in these areas.
DysImmune Research wants to step up and fill the gaps to connect directly with people affected by Long COVID, ME/CFS and other immune dysfunction, to not only keep them up to date with the latest information and developments, but to involve them in the process so they can be part of the journey of finding answers to their health questions.
Community-led
A core guiding principle at the heart of our approach has been to partner with individuals who have lived experience of immune dysfunction, such as Long COVID and ME/CFS. Our organisation was co-founded by 2 people with ME/CFS, alongside Dr Brooks.
DysImmune Research understands that patients are experts of their own health, and obviously have the biggest vested interest in finding treatments. Whereas patients have been pushed aside, ignored, or dictated to in the past, we aim to work alongside the community collaboratively to harness their knowledge and passion.
Māori & Pasifika
The results of a significant nationwide study, “Ngā Kawekawe o Mate Korona | Impacts of COVID in Aotearoa” reported that the impacts of COVID-19 have been more severe for Māori, Pasifika, and disabled individuals, raising concerns about the potential disproportionate adverse impact of Long COVID on these communities.
We know that our tangata whenua and tagata Pasifika face unique barriers to diagnosis and medical treatments such as inequities and stigma, particularly with illnesses characterised by fatigue such as Long COVID and ME/CFS.
We aim to actively collaborate with our Māori and Pasifika communities to ensure that their voices are heard and that mātauranga is shared, with the aspiration that communities can take power over their own hauora. There is immense patient and community demand for this research.
Co-founder Rohan Botica (Ngāti Tūwharetoa, Te Āti Haunui-a-Pāpārangi) leads the Māori and Pasifika lived-experience group to connect with communities and ensure equitable representation and active engagement with Māori and Pasifika participants.
We have also established collaborations with research teams experienced in Kaupapa Māori methodologies to ensure those impacted by COVID-19 receive equitable access to research opportunities. This includes a nationwide network, the Long COVID Collective (HRC funded) plus a HRC Health delivery grant collaboration led by Associate Professor Mona Jeffreys: Evidence-based Management of Long COVID. This collaboration includes people with lived experience, tāngata whenua, researchers (including Māori and Pasific), primary and secondary care health professionals.