Rheumatic fever is a particularly nasty and complex disease that disproportionately impacts young Māori and Pacific peoples in Aotearoa New Zealand. Rheumatic fever can lead to permanent damage to the heart valves, known as rheumatic heart disease. There is a lot that remains unknown about the causes and pathology of rheumatic fever, making it difficult to reduce incidence rates.

In 2018, a series of engagements with stakeholders from across the rheumatic fever prevention and management system identified the need for community-led solutions. The Rheumatic Fever Co-Design Initiative (2020 – 2024) was born out of this aspiration; a partnership based on collective impact.

At the heart of the partnership were the three autonomous design teams – one team representing each of the three priority communities of Māori, Samoan and Tongan. These highly talented and visionary teams consisted of people with diverse skills, knowledge and experiences, equipping the teams with the cultural knowledge and relationship capital to engage effectively with communities. The three teams took responsibility for ensuring the work was done in ways that were consistent with cultural values and community aspirations, and from this platform, they identified new approaches.

Some of the solutions included a peer-to-peer network for Tongan families that enabled healing, culturally responsive tools and training for clinicians to deliver clinical services to Samoan families, and a series of awareness-raising videos for Tamariki Māori that drew on Māori mythology and stories.

The Co-Design Initiative, has inspired hope in a system that has been weighed down by the heaviness of rheumatic fever. It has demonstrated the value of slowing down and creating the conditions for communities to guide the direction of our efforts, and the importance of everyone in the system working in partnership.

“This was the best kaupapa I’ve worked on because of the focus on contributing to the moemoeā, or dreams, of our whānau living with rheumatic fever. Our team composition enabled us to access important parts of Te Ao Māori, allowing us to lead with Māori values while ensuring we held the mana of our whānau at the forefront of our minds at all times.”

Kataraina Davis (Ngāti Whātua Ōrākei, Ngāti Kahu, and Ngāti Hine)
Māori Team Lead