Interviews with Indigenous Māori with type 1 diabetes using open-source automated insulin delivery in the CREATE randomised trial

Mercedes Burnside; Tracy Haitana; Hamish Crocket; Dana Lewis; Renee Meier; Olivia Sanders; Craig Jefferies; Ann Faherty; Ryan Paul; Claire Lever; Sarah Price; Carla Frewen; Shirley Jones; Tim Gunn; Benjamin J Wheeler; Suzanne Pitama; Martin de Bock; Cameron Lacey

doi:10.1007/s40200-023-01215-3

Interviews with Indigenous Māori with type 1 diabetes using open-source automated insulin delivery in the CREATE randomised trial

J Diabetes Metab Disord. 2023 Mar 23;22(1):861-871. doi: 10.1007/s40200-023-01215-3. eCollection 2023 Jun.

Authors

Mercedes Burnside¹, Tracy Haitana², Hamish Crocket³, Dana Lewis⁴, Renee Meier¹, Olivia Sanders¹, Craig Jefferies^{5

6}, Ann Faherty⁵, Ryan Paul^{3

7}, Claire Lever⁷, Sarah Price⁷, Carla Frewen⁸, Shirley Jones⁸, Tim Gunn⁹, Benjamin J Wheeler⁸, Suzanne Pitama², Martin de Bock¹, Cameron Lacey²

Affiliations

¹ Christchurch, New Zealand Department of Paediatrics, University of Otago.
² Christchurch, New Zealand Department of Māori Indigenous Health Innovation (MIHI), University of Otago.
³ Hamilton, New Zealand Te Huataki Waiora School of Health, University of Waikato.
⁴ OpenAPS, Seattle, WA USA.
⁵ Auckland, New Zealand Department of Paediatric Endocrinology, Starship Children's Health, Te Whatu Ora Te Toka Tumai.
⁶ Auckland, New Zealand Liggins Institute and Department of Paediatrics, University of Auckland.
⁷ Waikato Regional Diabetes Service, Te Whatu Ora Health New Zealand Waikato, Hamilton, New Zealand.
⁸ Dunedin, New Zealand Department of Women's and Children's Health, Dunedin School of Medicine, University of Otago.
⁹ Nightscout New Zealand, Hamilton, New Zealand.

Abstract

Purpose: Open-source automated insulin delivery (AID) is used by thousands of people with type 1 diabetes (T1D), but has unknown generalisability to marginalised ethnic groups. This study explored experiences of Indigenous Māori participants in the CREATE trial with use of an open-source AID system to identify enablers/barriers to health equity.

Methods: The CREATE randomised trial compared open-source AID (OpenAPS algorithm on an Android phone with a Bluetooth-connected pump) to sensor-augmented pump therapy. Kaupapa Māori Research methodology was used in this sub-study. Ten semi-structured interviews with Māori participants (5 children, 5 adults) and whānau (extended family) were completed. Interviews were recorded and transcribed, and data were analysed thematically. NVivo was used for descriptive and pattern coding.

Results: Enablers/barriers to equity aligned with four themes: access (to diabetes technologies), training/support, operation (of open-source AID), and outcomes. Participants described a sense of empowerment, and improved quality of life, wellbeing, and glycaemia. Parents felt reassured by the system's ability to control glucose, and children were granted greater independence. Participants were able to use the open-source AID system with ease to suit whānau needs, and technical problems were manageable with healthcare professional support. All participants identified structures in the health system precluding equitable utilisation of diabetes technologies for Māori.

Conclusion: Māori experienced open-source AID positively, and aspired to use this therapy; however, structural and socio-economic barriers to equity were identified. This research proposes strength-based solutions which should be considered in the redesign of diabetes services to improve health outcomes for Māori with T1D.Trial Registration: The CREATE trial, encompassing this qualitative sub-study, was registered with the Australian New Zealand Clinical Trials Registry (ACTRN12620000034932p) on the 20^th January 2020.

Supplementary information: The online version contains supplementary material available at 10.1007/s40200-023-01215-3.

Keywords: Automated Insulin Delivery; Diabetes Mellitus Type 1; Health Equity; Indigenous Māori; Open-Source; Qualitative Research.