Many bacteria that are a concern for public health vary in their symptoms and clinical presentations (the associated symptoms of disease). Genomics Aotearoa research is trying to pinpoint likely candidates in the bacterial genomes that are responsible for these different clinical outcomes, looking at Streptococcus pyogenes - a pathogen of major health concern.
What we are doing
Collaboration with the National Hauora Coalition is essential to the success of Genomics Aotearoa’s Streptococcus pyogenes project. The NHC combines Indigenous knowledge with evidence-based approaches to improve outcomes in wellbeing, prosperity, and equity in health. The partnership with NHC is important to ensure Māori and Pasifika-informed culturally responsive processes and data sovereignty are embedded in the project. Ultimately, NHC will be part of an initiative for improving health outcomes for Māori and all populations in Aotearoa.
Tira Phillipson-Puna, a research assistant with the NHC, has been leading the community consultation process, seeking insights from Māori, Cook Island Māori, Tongan and Samoan communities. Avoiding a one-size-fits-all approach is important. Considering different ethnic, iwi and regional perspectives ensures genuine rather than tokenistic inclusion in research.
“These communities provided the original samples, so we wanted to engage fully with them to get their feedback on using the samples for this project. It’s important to know how they feel about the researchers using existing collections for research, what that means for data governance, and how to share information and results from the project back to those involved,” Tira said.
Tira has made significant progress in the engagement process, using recruitment advertisements to attract both healthcare worker and patient participants through the NHC networks. The advertisements were followed by two pilot workshops and two focus groups, with additional workshops planned for patient participants.
The workshops focused on awareness, information sharing, and involving participants in the process. The primary question posed by the consultation was: “How should a laboratory care for your Streptococcus sample throughout its research journey?”
Information resources used described what Streptococcus is, the disease it can cause, the process for taking samples, how the samples would be used, and the journey of the samples through the laboratory process.
The initial workshops helped discover the level of information needed by the participants. As a result, future workshops will simplify some of the more specialised terminology and tailor the language used to suit both healthcare workers and patients.
Ultimately, the outcomes of this engagement will form the basis of guidelines for researchers who regularly collect samples or already have collections of samples from Māori or Pasifika communities.
Read about Identifying genetic drivers of stretococus pryogenes here