Table 1.

Community engagement areas

Community engagement area	Description	N (%)	Examples of best practice
Community-centered	Addressing a priority health issue determined by the community, by working closely with the community	8 (20%)	• Sought consultation with the community to determine priority health issue (Fohner et al. 2013; Fohner et al. 2015; Scally et al. 2017) • Community-initiated projects whereby community members approached researchers with concern of disease (Arbour and Cook 2006; Asuri et al. 2018)
Partnership and governance	Conducting research within a mutually respectful partnership, with Indigenous community members in key leadership positions	14 (35%)	• Establishing an Indigenous advisory group comprising community members (Arbour and Cook 2006; Fohner et al. 2013; Gray et al. 2017; Binnington et al. 2012; McWhirter et al. 2014, 2014; Murdoch et al. 2012; Scally et al. 2017; Voruganti et al. 2010; Zhu et al. 2013) • Establishing a long-term relationship through creation of a long-term cohort using community-based participatory research (CBPR) methods (Asuri et al. 2018; Fohner et al. 2013; Larcombe et al. 2015; Larcombe et al. 2017; McWhirter et al. 2014) • Extensive community consultation and consent obtained from both local health board, community leaders, and community members to ensure comprehensive buy-in for the project (Arbour and Cook 2006; Asuri et al. 2018; Gray et al. 2017; McWhirter et al. 2014)
Capacity-building	Capacity building as a key focus of the research partnership	6 (15%)	• Employing local community members to assist in research for skill development and employment opportunities (Arbour and Cook 2006; Asuri et al. 2018; McWhirter et al. 2014; Voruganti et al. 2010) • Research collaboration facilitated improved diagnosis, treatment, or management of the disease studied including increased public health interventions, screening and treatment of carriers, accessibility of treatment measures (Arbour and Cook 2006; McWhirter et al. 2014) • Research collaboration created or supported existing community health programs including education with healthcare professionals, food-based programs, promoting health lifestyles and access to healthcare (Arbour and Cook 2006; McWhirter et al. 2014)
Flexibility and cultural considerations	Flexibility in study implementation to respect Indigenous culture	9 (22%)	• Adapted information materials by working with community representatives to create culturally acceptable and informative materials (Asuri et al. 2018, p. 201; McWhirter et al. 2014) • Consent process was performed with culturally appropriate materials and local interpreters to ensure understanding and that all questions were answered (Gray et al. 2017; McWhirter et al. 2014). Interpreter present for consent process (El-Gabalawy et al. 2011; Scally et al. 2017; Voruganti et al. 2010) • Adaptation of protocol to community ways of knowing and being e.g. story-telling (McWhirter et al. 2014), hunting season (Voruganti et al. 2010), and using whakapapa to construct heritage (Cameron-Christie et al. 2018)
Respect	Respecting communities’ past and present experience of research	12(35%)	• Agreement with community in the form of a research agreement or Memorandum of Understanding (Anderson et al. 2015; Murdoch et al. 2012; Scally et al. 2017) • Agreement with participants as part of consent process, sample use, and subsequent studies (Arbour and Cook 2006; Asuri et al. 2018; Cameron-Christie et al. 2018; McWhirter et al. 2014) • Result disseminated regularly to community members (Arbour and Cook 2006; Asuri et al. 2018; Scally et al. 2017), and/or prior to publication to seek approval from elders or community members (Anderson et al. 2015; Asuri et al. 2018; McWhirter et al. 2014; Voruganti et al. 2010) • In decisions related to previous negative Indigenous experiences with genetic research, advice was sought from the community on how to proceed (McWhirter et al. 2014, 2014) • Ensure that research protocols respect community wishes, e.g. not to collect origin or relatedness data (Fohner et al. 2013; Larcombe et al. 2015)