Co-design Pacific-style

Abstract

In 2016, General Practitioner Dr Tana Fishman and her Samoan patient Rose Lamont attended a Patient and Clinician Engagement Program workshop in North America. Inspired, they formed the Pacific People’s Health Advisory Group (PPHAG) and a Pacific Practice-Based Research Network (PPBRN) in South Auckland, Aotearoa (New Zealand). Many Pacific nation migrants in this region live in relative deprivation, suffering poorer health outcomes than the general population. University researchers ran workshops in research methodologies, and the combined groups formed the Pacific Research Collective. The Collective generated research questions aimed at reducing Pacific health inequities in South Auckland. The Collective are now answering the top two questions on interventions for gout and rheumatic fever, both very prevalent in Pacific people. The community and practice groups are equal partners with researchers in the design, implementation, and evaluation of interventions. Several key governmental organizations and experts provide advice and support.

Introduction

Professor Felicity Goodyear-Smith is a senior General Practitioner academic who invited Tana Fishman and Rose Lamont to attend the North American Primary Care Research Group in 2016. Following the workshop, the community Pacific People’s Health Advisory Group (PPHAG) and the Pacific Practice-Based Research Network (PPBRN) were established. Felicity brought in senior Pacific researcher Malakai ‘Ofanoa and together they ran workshops, practice groups for the community, and assembled a Pacific research team. Felicity mentors researchers in research and writing skills, her mentees including Tongan research fellows Samuela ‘Ofanoa and Siobhan Tu’akoi and Samoan research GPs Maryann Heather and Hinamaha Lutui. Felicity helps operationalize the two parallel research projects, using her extensive networks and professional connections for engagement and talanga (interactive talks) with key leaders in Pacific health, experts in gout and rheumatic fever, and government agencies such as Pharmac – a Pharmaceutical Management Agency that decides which medicines are subsidized for use in New Zealand. These connections are used to partner with and support the PPHAG’s proposed interventions.

Who should benefit?

Pasifika are Pacific people living in Aotearoa/New Zealand (NZ) and are mostly immigrants from the island nations of Samoa, Cook Islands, Tonga, Niue, and Fiji. With a national population of 382,000, Pasifika comprise over 8% of the NZ population. A disproportionate number of Pasifika live in relative deprivation with socio-economic and health disparities. The majority (over 300,000, >79%) live in South Auckland.

The Pacific Research Collective conducts research to help reduce Pasifika health inequities. Both gout and rheumatic fever are serious health issues for this population. Pasifika have a genetic predisposition for gout, with over three times the prevalence of the non-Pasifika population. 22% of Pasifika men over 20 years old suffer from the condition. By age 65, 47% of Pasifika men have gout, compared with 17% of the non-Pasifika population. Acute gout flares can be prevented through continuous long-term urate-lowering therapy such as allopurinol, which confers considerable health and social benefits. However, only 35% of Pasifika receive this preventative medication, compared to 44% of the non-Pasifika population. Pasifika also have earlier onset, higher flare frequency, more joint inflammation, 9 times as many hospitalizations, and due to gout have a lower health-related quality of life than the general population. 

Similarly, Pasifika have the highest prevalence of rheumatic fever in NZ, and one of the highest in the world. Over 60% develop rheumatic heart disease. Again, there is a strong genetic pre-disposition. Pasifika children aged 5-14 are 80 times more likely to develop acute rheumatic fever compared to non-Pasifika children. Pasifika in Auckland are 240 times more likely to be hospitalized from rheumatic fever compared with the general population, and Pasifika boys in South Auckland aged 5-14 have a rate of rheumatic fever of 112.8 per 100,000. 

While systematic reviews and NZ intervention stock takes describe several initiatives, these have not been effective in reducing the burden of gout and rheumatic fever for the Pasifika population. The PPHAG and PPBRN co-design interventions tailored to the need of Pasifika, leading to greater health equity. While Pasifika should be the main beneficiaries of this project, it is likely  interventions will also be relevant for Indigenous Māori.

Engagement 

Patients and the community have been engaged in this project from the onset and have ownership of the project. Members belong to several Pacific ethnicities including Samoan, Tongan, and Nuiean. Mmebers come from a variety of backgrounds, ranging in age from young to retired. In 2018, Dr Tana Fishman formed the Pacific Practice-Based Research Network (PPBRN) of South Auckland practices. Each practice provides a ‘research officer’ (GP, nurse, or receptionist) as a research champion for the practice. Tongan University of Auckland researcher Malakai ‘Ofanoa and GP academic Prof Felicity Goodyear-Smith ran workshops for the combined groups on research question formation, basic methodology, and Pacific research frameworks. In subsequent workshops, members brainstormed, refined, and prioritized research questions aimed at improving the health and well-being of their community. Top questions on the list included ‘How can we improve uptake of urate-lowering therapy by Pasifika with gout in South Auckland?’ and ‘How can we prevent or reduce rheumatic fever for Pasifika in South Auckland?’. The PPBRN set about answering these two questions. 

Initially, the PPBRN used honours and masters students before securing research grants to develop and evaluate interventions to address the issues. They now have two Pacific postdocs, Samuela ‘Ofanoa and Siobhan Tu’akoi, leading the gout and rheumatic fever projects respectively and working in tandem on each other’s projects. Although all community group members are actively engaged, the core team consists of Malakai, Samuela, Siobhan, Rose (PPHAG’s leader), two Samoan GP members of the PPBRN, Maryann Heather, and Hinamaha Lutui. Following systematic reviews and NZ stock takes of what has worked, the PPBRN are using co-design to develop, implement, and evaluate novel innovations. Collectively, PPHAG, PPBRN and researchers are using talanga (interactive conversations) in a series of workshops, working in parallel for the two conditions. Following presentation of summaries of what has already been tried, the group brainstorm interventions. Ideas are collated, synthesized, fed back, and interventions further refined. Finalized interventions, process and outcome evaluations will be implemented in 2023-2024. The collective group will be involved at every step.

Research

The shape and delivery of this research is the direct result of engagement with the community and practice groups. Pacific research frameworks guide the research methodology. This includes the fa’afaletui model, emphasizing a collective approach and requiring different perspectives to solve a problem - ‘views from the top of the mountain, top of the tree, and the man in the canoe fishing’. Fa’afaletui fits well with co-design and mixed methodology. 

Fonofale is another framework used, incorporating the meeting (fono) house (fale) metaphor for holistic health and well-being. Family is seen as the foundation, with four house-posts (spiritual, physical, mental, and social) supporting a roof of cultural values, set in the wider context of time and place. Workshops are based on the principle of talanga (interactive talking with a purpose). 

Evidence indicates interventions promoting use of urate-lowering therapy for gout and preventing rheumatic fever are largely failing Pasifika. This is the gap the research aims to fill, addressing barriers to health interventions uptake. Both projects are conducted in tandem, the same groups attending workshops for each. Although initially workshops were face-to-face, following COVID-19 the group adapted rapidly to remote meetings, with consistently high attendance and engagement. 

The project is divided into 3 phases respectively for gout and rheumatic fever. For gout, Phase 1 constitutes an observational time series of the prevalence of patients with gout, examining the proportion with urate blood-level monitoring and the use of urate-lowering medication over the past 5 years. For rheumatic fever, Phase 1 comprises a quantitative analysis of the rheumatic fever burden within Auckland and across New Zealand over the last 5 years, including sub-analyses by ethnicity. In Phase 2 for both studies, the Collective workshops have brainstormed possible interventions to address previous uptake barriers, using culturally appropriate talanga communications. Results have been synthesized  and advisory boards have been consulted regarding feasibility and effectiveness, further refining interventions. In Phase 3, the designed interventions will be implemented in South Auckland with process and outcome evaluations conducted by the continued engagement from the Collective. An implementation framework will be produced to facilitate further roll-out. While the Collective evaluates the intervention, implementation must be independent of the research team to ensure it continues after research is complete.