Strategies,Reflections,and Recommendations for Community Engagement While Conducting Research With a Haudenosaunee First Nations Community: The Six Nations COVID CommUNITY Study

Author Positionality

We, the primary authors, M.Y. Powless-Lynes and T. Bomberry, are both Six Nations community members and youth, whose identities, experiences, and relationship to the community were the foundation of our decision-making, our engagement approaches, and our reflections, as presented in this article. Our positionalities are described below.

Maggie Yakorennio Powless-Lynes: “Yakorennio” wa’onkhsén:non’ ne akhsothkénha, Wilma Bomberry. Kanyen’kehá:ka niwakonhwentsyò:ten táhnon wakathahyón:ni, Ohswé:ken nitewaké:non. Ohswé:ken wa’ontehyá:ron’ ne ake’nihsténha, Jacqui Powless. Yah tehronkwehón:we ne rake’níha, Ron Lynes. Ákta Ohswé:ken wa’akwatehyá:ron’ ne tehniyáhsen akhtsì:son. É:so tsi wakatera’swí:yo tsi tahontkahwányon’ ne akhwá:tsire akwé:kon tsi nahò:ten tewakatonhwentsyoníhne akonnhiyó:hake shiwakatehyaróntye. Yonkya’takénhen ne akenakeráhsera shikateweyénhstha Bachelor’s nok Master’s programs. “Yerihwí:saks” niwakyo’tenhserò:ten nón:wa táhnon 2021 takatáhsawen’ aonkyó’ten’ ne ki’ Six Nations COVID CommUNITY Study. Onkwawenna Kentyohkwa wa’katyà:taren’ ne Sehske’kó:wa, 2024. Tho’ wakahronkha’onhátye ne Kanyen’kéha, akewén:na ki’ ná:’a. Thonatewennatyerénhton ne ake’nihsténha shakotiyen’kénha, é:so niháti yonkhró:ri to niyorihowá:nen aonsayakwà:ronke’ ne Onkwehonwe’néha ne káti entsyonkwata’karí:teke táhnon entsyakwatatyenteríhake á:re ne yakyonkwehón:we. Eh’ nontyé:ren wa’kate’nikonhrí:sa’ Kanyen’kéha akateweyenhstà:na’. Kahská:neks sénha akà:ronke’ ne káti sewenhní:serat tá:we enkkwé:ni’ áohskon Kanyen’kéha akatá:ti’, akanonhtónnyon’, nok aonkyó’ten’, tsi nikarì:wes enkónnheke. “Yakorennio” is the name given to me by my grandma, Wilma Bomberry. I am Kanyen’kehá:ka (the word for the Mohawk Nation, in the Mohawk language), wolf clan from Six Nations of the Grand River. My mom, Jacqui Powless, grew up on Six Nations and my dad, Ron Lynes, is white. I was raised with my parents and two older brothers on Grand River territory, off-reserve. I grew up close with the land and my family. I have experienced a lot of privileges in my life, always having secure housing, access to food, health care, and education. I was trained in scientific methods through my Bachelor of Science in biochemistry at McMaster University and in research and health equity through my Master of Public Health in Indigenous Health at the University of Toronto, both of which I was able to complete due to community support. I came to this study in August 2021 because of my relevant training and a motivation to support my community as we went through the COVID-19 pandemic. I aim to do work that is empowering for the community, uplifts Haudenosaunee (a confederacy of six Indigenous nations: the Seneca, Cayuga, Onondaga, Oneida, Mohawk, and Tuscarora) knowledge and culture, and advances our sovereignty. In September of 2024, I began a full-time language immersion program on Six Nations, called Onkwawenna Kentyohkwa, to learn my language, Kanyen’kéha (the Mohawk word for the Mohawk language). My grandparents were first language Kanyen’kéha speakers, and so many people have told me how important it is for us as Onkwehón:we to relearn and speak our languages so that we will be healthy again and we will know who we are again. I intend to advance my proficiency as a Kanyen’kéha speaker so that one day I can live my whole life in the language, including the work I do in research.

Tristan Bomberry: I am a Cayuga man from the Six Nations, born and raised in Hamilton. Although I grew up off-reserve, I stayed connected to the Six Nations community through extracurricular activities and local events. For the past 4 years, I’ve worked on Six Nations in various research-focused roles. My academic background, completed at McMaster University, includes a Bachelor of Health Sciences (2022) and a Master of Science in Health Research Methodology (2025). In addition, I’m currently pursuing a Doctor of Medicine (MD) degree at McMaster’s Michael G. DeGroote School of Medicine. In my work, I draw from my experiences as a community member, an urban Indigenous man, and a student. My academic journey at McMaster University was shaped largely by Western education, and while I aim to balance this perspective with my community background, I acknowledge that biases may still be present. Collaborating closely with participants has deepened my appreciation for the critical importance of community involvement at every stage of the research process.

The Community: Six Nations of the Grand River

Six Nations of the Grand River is a Haudenosaunee community in Southwestern Ontario, established by the Haldimand Proclamation of 1784, which compensated Haudenosaunee for homelands lost due to their allyship to the British Crown during the American Revolution. This includes lands six miles deep on each side of the Grand River from its mouth to its source (Six Nations Lands & Resources, 2019).

The 1779 Sullivan-Clinton Campaign is considered the first genocidal campaign in the history of the United States, whereby George Washington aimed to exterminate the Haudenosaunee by displacing them from their homelands across upper New York State and destroying homes, lands and food sources, which led to the death of approximately 44% of the Haudenosaunee population (Koehler, 2018). Since 1784, Haudenosaunee have been dispossessed of over 95% of the Haldimand Tract and continue to fight to restore land sovereignty (Six Nations Lands & Resources, 2019; Six Nations of the Grand River, 2024).

Six Nations is the largest First Nation in Canada by population, with over 29,000 registered members, and the second largest by landmass, spanning over 46,000 acres, located near urban centers in Southwestern Ontario (Six Nations Land & Resources, 2019; Six Nations of the Grand River, 2024). Six Nations has its own wellbeing department as part of SNGREC, community research ethics committee, post-secondary institution, and many academics from the community working for community organizations.

The Six Nations COVID CommUNITY Study

To address the need for Six Nations-specific data during the COVID-19 pandemic, the Department of Well-Being at SNGREC partnered with the Population Health Research Institute (PHRI), a non-Indigenous research institute housed at McMaster University and Hamilton Health Sciences, to conduct the SNCCS. This study aimed to understand vaccine confidence and hesitancy, investigate the immunity of community members in response to COVID-19 vaccination and infection, and explore the community-specific, socioeconomic, and health factors that intersected with the COVID-19 pandemic.

Initially, the Six Nations cohort sought to recruit 1,000 participants, 500 of whom were vaccinated against COVID-19 and 500 who were unvaccinated. The final recruitment number was 746 participants, of whom 664 were vaccinated and 82 were unvaccinated. Recruitment criteria included self-identified Six Nations community members who were at least 18 years old. Between July 2021 and August 2022, our team engaged with the community to enroll participants through diverse strategies.

At enrollment, participants completed a consent form, began a series of surveys, and provided the first of two dried blood spot (DBS) samples which were used to assess antibodies against COVID-19. Following enrollment, participants were asked to complete nine survey sections, either with the study team or on their own. Participants were asked to provide a follow-up DBS sample several months after their initial visit.

Indigenous People and Research

Colonization drives health disparities for Indigenous people in Canada, due to systemic racism, threats to sovereignty over land, and disruption of traditional economies, structures, and health systems (Burnett et al., 2020; Chrisjohn & McKay, 2017; Geary, 2017; Lowrie & Malone, 2020). Western research can act as an extension of colonization through the assertion of Western knowledge as the intellectual standard that other knowledge systems must meet to be deemed valid (Smith, 2021). Over-pathologization and dehumanization of Indigenous people occur through research and health care, when biologic and genetic factors are designated as the source of health disparity, rather than racism and colonization, which are the true culprits (Burstow, 2019). In addition, First Nations people continue to be taken advantage of as subjects in research projects that are led by non-Indigenous people and institutions (MacDonald, 2024; Moore, 2021). While racism and white supremacy impact Indigenous peoples’ relationship to research, Indigenous people continue to assert sovereignty over how research with their communities is conducted (Griffiths et al., 2021). This article is part of our team’s assertion of sovereignty over how research should be done with our community.

When our team began implementing the SNCCS at Six Nations, there was little literature available to advise us on how to engage the community in research, as a unique First Nation within the context of the COVID-19 pandemic. Narratives in academic literature about community engagement are commonly led by non-Indigenous researchers writing about the Indigenous communities they have worked with (Brockie et al., 2017). While existing literature discusses similar themes and recommendations as we discuss in this article, few frame their writing in the context of engagement practices with a Haudenosaunee community, and few have primary authors who are from the Indigenous communities they are discussing. This article supplements existing literature by Six Nations academics Hill and Coleman (2019) and Thomas (2022), who utilize wampum belts (belts made by the Haudenosaunee to act as a visual memory of agreements and responsibilities) as metaphors for research frameworks (Nahwegahbow, 2014).

Administration and Data Collection Tools

Community-based study staff jobs were posted and hired through McMaster University. These staff were supervised by S. Smith. The non-Indigenous research team at PHRI provided support to the community-based staff through weekly Zoom meetings, addressing any technical questions or concerns, and coordinating the transport of DBS samples to the PHRI lab for analysis. The PHRI team traveled to Six Nations for a couple of in-person events throughout the span of the study.

SNGREC did not have access to or control over study funds and was not given any funds such as petty cash or a corporate credit card. Any expenses incurred had to be held on the personal credit cards of the community-based staff and reimbursed through PHRI. In the first 6 months of the study, the community-based staff were not given a consistent supply of gift cards from PHRI. Several staff members had to purchase gift cards out of pocket in amounts up to CAD $2,000.00 to ensure that they would have them available to give to participants during the recruitment days.

The survey tool was based on a tool used with a different cohort of the COVID CommUNITY Study, with modifications to adjust it to a First Nations population. Many additional adjustments to question wording and answer options had to occur throughout the study to make them more relevant for Six Nations. Partway through the study, the team added “prefer not to answer” options to many of the survey questions to reduce the risk of participants feeling coerced into providing information they were not comfortable sharing, for the sake of receiving a gift card. In December 2021, to try to boost survey completion rates, a subset of questions that captured the most important variables was included in the initial survey and was completed upon enrollment with participants.

Hiring and Training Staff

S. Smith prioritized hiring Six Nations community members to join the team. Except for the volunteers and the research partners at PHRI, all the study staff were Six Nations community members. In Spring of 2022, a community outreach research assistant from Six Nations was hired specifically because of their extensive background working with community organizations, their interpersonal skills, and their ability to form strong connections with community on behalf of the SNCCS. They worked to identify and coordinate recruitment opportunities with community organizations and provided community members with a sense of familiarity and trust.

In late 2021, our team required additional staff support to complete surveys and coordinate follow-up appointments with participants. Without the budget to hire additional full-time employees, student volunteers were recruited from McMaster University. These student volunteers were non-Indigenous, as we did not receive any Indigenous applicants.

Our team received training from PHRI on research processes such as how to ensure informed consent is obtained, how to collect DBS samples, and how to navigate a survey database. We received training from S. Smith on how to analyze the study data and create knowledge translation products.

We ensured that the non-Indigenous volunteers who joined the study team completed an online training program developed by M.Y. Powless-Lynes and T. Bomberry. This training outlined elements of cultural safety, information about the community, and how to address questions or concerns from community members. Volunteers were responsible for engaging with participants remotely via phone, text, and email to complete surveys or schedule appointments. Our team ensured volunteers were compensated for their time through gift cards for completion of surveys. As well, several volunteers transitioned into paid research assistant positions.

Engaging Community

We used various avenues to increase awareness of our study and advertise events, including social media, posters, brochures, published calendars, and radio segments which each catered toward a different demographic. Advertisements were created in compliance with the Accessibility for Ontarians with Disabilities Act (AODA), using clear language and being mindful of color patterns and fonts that were accessible for vision-impaired individuals. The media we developed communicated the study’s processes to community members and all study staff were informed about how participant data would be stored, accessed, analyzed, and shared.

During the first several months of the study, COVID-19 restrictions limited our team’s ability to engage in-person with community members, and vaccine clinics were the only community setting where many community members could gather at one time. When COVID-19 restrictions lifted, our team set up pop-up booths and hosted drop-in sessions in locations that were accessible, familiar, and convenient, where community members would naturally visit. Recruitment was supported by many community organizations, who allowed us to recruit and advertise on-site. We worked with Indigenous health centers in urban areas to reach off-reserve community members. In addition, we ensured our presence at large community events such as the annual powwow, Six Nations Solidarity Day, Community Awareness Week, and Bread and Cheese Day.

Since the SNCCS coincided with the COVID-19 pandemic and the public health restrictions that accompanied it, our team had to develop ways to engage with participants in a safe and accessible manner. We offered home visits to engage participants with mobility or transportation concerns, and to those who did not feel comfortable entering public spaces due to the risk of infection. With participant consent, we sent staff with personal protective equipment to their place of residence, completed surveys with them, and dropped off DBS kits for self-completion and picked them up later as a no-contact option.

It was important to maintain participant engagement beyond recruitment. We maintained contact with participants so that they would return for their follow-up visit and complete their surveys. Participants were emailed, phoned, texted, and eventually sent a postal letter requesting completion of the study activities. Some participants were lost to follow-up and a protocol had to be developed to prevent participants from feeling harassed by too many contact attempts.

Incentives

Participants received a CAD $25.00 gift card upon enrollment into the study, completion of the primary survey, and first DBS, and received a second CAD $25.00 gift card after completion of their follow-up visit. These gift cards were physical cards from a variety of sources such as Walmart, Shoppers Drug Mart, President’s Choice, and Tim Horton’s, which were chosen based on our team’s knowledge of where community members commonly shop.

We recognized a pattern of recruitment where community members enrolled in the study after having heard about it from a friend or family member who was already enrolled. From here, we developed a referral program. The program’s purpose was to further incentivize word of mouth and draw on the strength of the community’s kinship networks, providing participants with a CAD $10.00 gift card for each person they brought into the study. Participants could refer up to three people, meaning that throughout the full timeline of the study they could be compensated up to CAD $80.00 in gift cards.

Our team provided food and beverages at many of our recruitment events, in the form of catered meals or to-go snacks. We made it clear that community members could attend and enjoy the food provided with no pressure or requirement to participate in the study. We made a point of talking with each person who attended, encouraged them to grab food, and told them they could ask us if they wanted to hear more about the study. Our goal with these events was to build relationships and establish the SNCCS staff as individuals who were eager to build meaningful connections.

Knowledge Translation

We held three community-wide knowledge translation events to share the data that was collected: a final recruitment event in 2022, a presentation of study results in early 2024, and an artistic reflection of community members’ pandemic experiences in late 2024. In addition to these events, our team created an infographic report of study results. We distributed this report physically and digitally at events, emailed it to participants, and mailed it to interested community members who preferred a physical copy over a digital copy. We distributed evaluation forms to attendees at one of our knowledge translation events and were able to gather demographic information and feedback about our knowledge translation methods.

Relationship With Community

The SNCCS was established through a research relationship between SNGREC and McMaster University that has spanned over 20 years. Partners at Six Nations were present from the onset of the Six Nations arm of the study and remained to carry out advertisement, recruitment, data collection, analysis, and knowledge translation. To identify priority variables, the PHRI team worked with the community to determine necessities for analysis and priorities for community.

Administration and Data Collection Tools

Throughout the study, we encountered several administrative challenges that could have been addressed more effectively. Many grant requirements mandate institutional affiliations, which meant authority over fund distribution and decision-making was held by PHRI, rather than by SNGREC. There were many instances where a transfer of agency and authority to SNGREC would have enhanced the quality of the study and the experience of participants. PHRI retained authority over hiring staff and followed institutional bureaucratic processes, which contributed to delays in onboarding and financial processes. There were delays in receiving study supplies because autonomy over study-related spending was not transferred to SNGREC or any on-the-ground research staff. There were times when our team did not have timely access to gift cards and thus could not provide participants with immediate compensation, which resulted in some participants expressing concern about their time not being valued. Our team had to wait upwards of 3 weeks to receive reimbursement for study-related expenses which could have been avoided if a corporate card or petty cash were given to the staff who were working in community.

In reflecting on transparency of communication between our team and our research partners, there were many times when referring to a research agreement would have helped our team navigate issues. What is usually laid out in a research agreement was established verbally, but with changeover of staff throughout the study, it was easy for verbal understandings to get lost. A more formal, written agreement would have helped ensure these understandings were maintained and would have given our team more confidence to advocate for ourselves.

Many survey tools and standardized scales have not been validated in Indigenous contexts (Lowell et al., 2023). This contributed to some discomfort when asking community members certain questions, as well as instances where participants had difficulty deciding on a response when the questions or response options didn’t make sense for them. Our team reflected that it would have been ideal to have been given agency over our research tools, with support from our partners for the skills or experiences we lacked, as no one on our team was an expert in survey design. With this structure in place, it’s possible we could have created research tools that were catered to our community, collected more accurate data, and avoided putting participants through unnecessary discomfort (Peters et al., 2019).

Our team learned it was useful to identify and gather priority variables upon the first visit with participants. This strategy worked well because even if a participant did not complete the surveys on their own or did not return for their follow-up visit, they would have provided answers to the priority data areas upon enrollment.

After we implemented “prefer not to answer” options, the research team reported increased confidence and comfort facilitating surveys with participants. If we noticed participant discomfort with certain questions, we were able to intervene by reminding them they could skip a question by saying “prefer not to answer.” This helped preserve the integrity of the data because participants weren’t forced to select an answer they weren’t comfortable with or that was inaccurate to complete the survey.

Hiring and Training Staff

Staff from Six Nations were essential in establishing the credibility of the SNCCS and ensuring accountability between research activities and the community. With personal relationships to the community, we felt a responsibility to ensure our research was safe, ethical, and valuable. We also saw that community members were more comfortable enrolling in the study when a fellow community member was involved in recruiting them. Some participants reported that they would not have participated in the study if they did not personally know the researcher who recruited them.

The addition of volunteers increased our team’s capacity and allowed senior research staff to spend more time working directly in community rather than doing tasks that could be done over the phone, such as booking appointments. We suspected that we did not receive interest from Indigenous students for these positions for a variety of reasons, including the relatively low number of Indigenous students at McMaster University compared to students of other backgrounds, that the posting for volunteers came through McMaster rather than SNGREC, and that volunteering tends to appeal to those from privileged backgrounds, who can afford to take on responsibilities without compensation (Overgaard, 2018).

Our team wanted to challenge institutional concepts of volunteering. Since several of our team members were recent university graduates, they knew from experience that students in research are sometimes taken advantage of and expected to do high-quality work without compensation (Naufel & Beike, 2013). This is why gift cards were provided to volunteers. The volunteers who did transition into employment provided valuable support to the study as they already had training and experience with the project.

With a diverse research team, this study allowed for a shared capacity-building partnership. This relationship was mutually beneficial as all staff received research experience, and our non-Indigenous students and staff underwent training on cultural awareness and gained exposure on how to safely engage with the Six Nations community. This partnership helped build research capacity within Six Nations community members while educating non-Indigenous researchers on the importance of cultural safety and how to conduct research with First Nations people.

The experience gained by several staff throughout the study helped them pursue further employment from SNGREC. M.Y. Powless-Lynes and T. Bomberry reported the value of having been involved from the onset of the project until the end, which allowed them to learn from the entire research process. The experience they gained on the SNCCS helped them pursue graduate degrees and transition into longer-term contracts at SNGREC following the conclusion of the SNCCS.

Engaging Community

Our team was able to build a strong physical presence in the community. After COVID-19 restrictions lifted and the team had spent several months setting up booths at community events, the non-community member staff on our team began to be recognized by community members. We received comments from community members referencing that they saw us at previous events, that someone they knew took part in the study, or that they themselves had already taken part in it.

Once we were able to offer home visits, complete surveys over the phone, and drop off DBS kits, participation and completion improved, and participants seemed more eager to enroll knowing that we could accommodate their needs and schedules. This also seemed to help engage those who were avoiding public spaces due to fear of COVID-19 exposure.

Another success of our community engagement was in our transparency regarding how the study operated and what participants’ roles would be. Because our staff from the community understood the tensions that can surround data and research within the community, they ensured that all staff were equipped to answer concerns about how data would be handled, stored, and used. When these concerns arose, the team reported that they felt prepared to respond confidently and were able to put participants at ease.

Despite the desire for data completion, our team recognized that we needed to respect when participants were not responsive to communication attempts. We should have established a communication protocol at the onset of the study, rather than in the middle of the study, to ensure participants felt respected and not pressured by different forms of contact while continuing to receive important information regarding their participation.

Participants suggested that we should have hosted a large-scale information session in the community prior to the study launch. This would have created an environment where community members could meet the staff, become familiar with the study’s purpose and tasks, and share questions or concerns they had. Hosting a large event was not possible at the beginning of the SNCCS due to COVID-19 restrictions but it is a practice we intend to implement for future projects.

Incentives

Some participants were content with the gift card amounts, while others reported that the amount of CAD $25.00 per visit was not worth their time to return for their follow-up visit or to recommend the SNCCS to a friend or family member. We believe the gift card amounts should have been higher, considering that participation demanded several hours of time, the cost of travel to research sites, as well as mental, emotional, and physical energy, in addition to the DBS sample which many participants told us was invasive or painful.

Our team recognized the power of Six Nations’ strong and intricate social networks, where word-of-mouth is a primary form of knowledge sharing. The referral program was popular. We saw participants excited and empowered about the idea of drawing on their networks to grow the study, while receiving a small incentive. The implementation of the referral program was approved by the Six Nations Research Ethics Committee. Its success helped inform the decision made in the Onkwehón:we Health Check-In, a community health survey led by SNGREC, to utilize a similar referral program to encourage participation and reach demographics within the community who may not normally participate in research.

As community members ourselves, we knew that in Six Nations, food is central to community gatherings and increases engagement. It’s a community practice to cook for one another in times of need or celebration, for hunters to share portions of their catch with their relatives, and to feed visitors. Food helped bring community members to our study events. Because we emphasized that anyone who attended could stay and enjoy food or take it to go without any requirement to chat with us or participate in the study, we were able to create a welcoming environment where community members could feel free to ask about the study without feeling pressure to take part.

The larger events appeared effective at providing attendees with a sense of closure to the study, as well as acknowledgement for what they helped us achieve through their participation. Through our feedback forms, attendees reported they appreciated having full meals provided at these events, compared to only snacks, and that the raffles and entertainment were big draws for them to attend. We saw the highest attendance at events where funds were invested into providing a variety of different activities for attendees to engage in.

Knowledge Translation

Through the evaluation forms we distributed at one of our knowledge translation events, we heard that many community members appreciated the infographic reports that were distributed and shared their excitement about seeing fellow community members running research activities. Some participants stated that they wanted to learn more about how the study results would be used to inform change within the community. Many also said they would have preferred to have more physical resources rather than QR codes or digital access to knowledge translation materials.

Discussions have been ongoing among our team and those at PHRI to determine the most valuable next steps for creation and publication of articles to further disseminate study results. While publications always support the careers of the authors creating them, they do not always support the communities that they are about (Sabin, 2024). Our team invested our time and effort into this article because we identified a need to have a published resource by Six Nations authors that we and other Haudenosaunee researchers could reference to help justify decision-making to institutions and funding agencies.

Relationship With Community

It was valuable that this study was built on existing relationships between SNGREC and McMaster University as PHRI and McMaster staff already had experience working with the community. In addition, some community members had already participated in past studies with McMaster, making them familiar with the process and more comfortable enrolling in the SNCCS.

Our team established a collaborative environment where we could problem-solve together and innovate strategies to overcome a variety of challenges we faced throughout the SNCCS. As community members and researchers, we were able to observe what participants were responding well to and what they were having trouble connecting with. From here, we identified gaps in our research methodology and innovated adaptations. While our partners at PHRI were often receptive to our recommendations, there were many times where we had to advocate strongly to gain their support when our suggestions were not standard practice in the research world.

Administration and Data Collection Tools

Each project with a First Nations community should be customized and co-developed with that specific community. This means that every research process will likely look different (Thomas, 2022). This may require principal investigators to ensure they have flexibility within grants to accommodate novel strategies and community-specific activities, which can alter timelines and budgets laid out by Western research projects (Gittelsohn et al., 2018). Research timelines and funding should accommodate this, and if they do not due to funding agency constraints, researchers should be advocating to those agencies to adjust their policies.

When partnering with a First Nation, institutions should transfer project funding to the community itself. This ensures that community-based researchers have access to funds without having to navigate through the partner institution’s bureaucratic processes, which can delay study activities unnecessarily. In the case where there is no partner organization within the community that can physically hold the funds, institutions should ensure that they provide transparency over financial matters such as budgets and reporting requirements and that funds remain accessible to community-level staff. When partnering with Six Nations, a delegation of authority surrounding daily operations such as the hiring process and finances to the community would promote community trust and sovereignty, while streamlining research operations.

Research agreements should be central to any research project with a First Nations community. Research agreements help facilitate respectful relationships with community by describing how the researchers and community will work together, what terms each party will follow, and what accountability measures exist should the researcher fail to uphold their responsibilities to the community (Panel on Research Ethics, 2023a). These research agreements can begin with Ownership Control Access Possession (OCAP^®) principles and include terms regarding how data is used and retained, as well as publication and knowledge translation activities (First Nations Information Governance Centre, 2024; Panel on Research Ethics, 2023a). Regardless of funders’ expectations of publication and data-sharing, First Nations must be able to exercise sovereignty over their own data and opt out of publication or sharing of results at any point in the research project, as they see fit. If a First Nations community as an entity is viewed with the same respect as an individual participant in research, their autonomy over their own data should be consistent with processes of informed consent (Panel on Research Ethics, 2023b).

Community and cultural considerations should extend to all aspects of research work with Six Nations, including the data collection tools. Research projects should utilize data collection tools that have been validated in a First Nations context. If no such tools exist, researchers should support community to create their own tools that are customized to their community. This process may include an analysis of the tools used to determine their validity, and using this analysis to adapt or create new tools to capture more accurate data for future projects (Peters et al., 2019).

Researchers should preserve participant autonomy and cultural safety within data collection. One way to do this is to allow “prefer not to answer” options for questions, to ensure participants can opt out of responding to questions that make them uncomfortable. This will also help preserve the overall integrity of the data (Van Quaquebeke et al., 2022).

Hiring and Training Staff

Future research with Haudenosaunee communities should be conducted by Haudenosaunee people. This does not mean that non-Indigenous researchers do not hold value or cannot offer support, but that the research should be led and carried out by community members. Researchers who are from community should be seen as holding expertise in their community experience and the research world and should be trusted and empowered to make decisions and inform institutional practices and research activities (Absolon & Dion, 2018). These researchers have a personal investment in the quality of the research and the experience of participants, which pushes them to uphold and demand a high ethical standard that non-Indigenous researchers may lack (Brockie et al., 2017).

Non-Indigenous researchers based at institutions should take on the responsibility of wielding their privileges to advocate for the Indigenous community and people they are working with. Acknowledging that academic institutions are often culturally unsafe places for Indigenous people to exist in, non-Indigenous partners need to step into the role of allyship and utilize their powers and privileges to uplift the voices of Indigenous partners who historically and contemporarily continue to be silenced (Griffiths et al., 2021).

All staff who support a research project should be provided the financial security of employment, ideally through well-compensated long-term contracts that lead to permanent positions. If a project utilizes volunteers, they should be compensated appropriately through financial means such as gift cards, as well as professional development and experiential learning that would support them to secure future employment and educational opportunities.

Research projects should support the professional development of community researchers and build research capacity within community. If there is a lack of community members with research experience, time and resources should be invested to provide them with training and opportunities so that they may lead future research projects. Indigenous researchers from community hold skills, experiences, and knowledge that make them invaluable to community-based research and may not be captured in a job description, resumé, or reflected on a paycheque. This community knowledge reduces the amount of training required for research assistants as they already know how to engage with community and, even without formal training, understand cultural safety and protocols. They also understand the interpersonal and political dynamics within the community. It is not difficult for Indigenous community members to learn how to do research. It is much more difficult for non-community members to understand and learn how to be part of a community.

Every staff member working on a research project with a First Nations community should have training on cultural safety (Griffiths et al., 2021). Even personnel who are operating at arm’s length, such as administrators or data analysts, impact the operations and outcomes of the research project, and interact with Indigenous staff. Personnel who are not required to have an understanding of First Nations communities bring a higher risk of harming Indigenous staff and participants involved in the project, as well as misunderstanding requests for support, or misinterpreting data.

All staff members should be trained in the principles of OCAP^®, the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2): Chapter 9, and have at least basic familiarity and relationships with the community they are working with. OCAP^® asserts that First Nations should have autonomy over data collection processes, and that they should own and control how their information can be used (First Nations Information Governance Centre, 2024). TCPS2 Chapter 9 outlines key principles of doing research with First Nations, Inuit, and Métis communities (Panel on Research Ethics, 2023a). This training will help staff gain an understanding of Indigenous peoples in Canada, culture, and colonial histories. Since there is diversity among Indigenous peoples in Canada, research budgets should include funding community-specific cultural safety training, so that research staff can gain insights one would be unable to find outside of the community.

Engaging Community

As is consistent with existing literature, we recommend that anyone involved in research with Six Nations be present in the community and partake in community activities as appropriate, to make themselves known to the community, rather than operating from a distance (Oster & Lightning, 2022; Thomas, 2022). As our team saw, this can lead to non-Indigenous staff learning how the community works, and being recognized by community members, which builds trust and familiarity.

Researchers should innovate strategies for engaging with community members in ways that are accessible. Acknowledging that research is often led by those in academia, advertising and study information should be catered to community members of all education levels (Kripalani et al., 2021). In addition, people with disabilities are consistently underrepresented in research projects (Brooker et al., 2015; Camanni et al., 2023). Researchers should consider how they can conduct home visits, conduct research activities online or over phone calls, texts, or emails, and otherwise adapt research tasks to reduce burdens on participants. Researchers should prioritize reducing barriers in connecting with participants by ensuring all materials adhere to AODA guidelines and any organization-specific accessibility policies.

We recommend that all study staff in future research projects be informed on how data will be collected, stored, transported, accessed, analyzed, and destroyed. Staff should understand the complex relationship many Indigenous people have toward their data and biological samples being collected, as well as concerns regarding anonymity and confidentiality. This will ensure that staff can respond to concerns from community members with empathy, understanding, and accurate information.

We recommend that researchers establish protocols that outline how they will respect participant autonomy and confidentiality. Regardless of the efforts of the research team, participants are often lost to follow-up, or decide they no longer want to participate in a project. This decision should be respected, and after unsuccessful attempts at communication, researchers should define when the participant is considered lost to follow-up and cease contacting them, asking them to complete research tasks.

Incentives

Researchers should ensure reciprocity to First Nations communities and participants through financial means. It’s important to acknowledge that if the academics, institutions, and research staff are benefiting financially from researching a community, the communities participating should also be benefiting from those finances (Hudson et al., 2023; Sabin, 2024). Type and amount of compensation for study activities should be determined by community members who better know what would be relevant and appropriate for community members to receive, as well as what amounts would be respectful without being potentially coercive (Division of the Vice-President, Research & Innovation, 2019; Sabin, 2024).

Another way to build momentum for research within Six Nations is to draw on participants’ social networks and incentivize them to bring in their friends and family to the project. This is an established methodology used with Indigenous populations who are often not reached through Western research methods (Smylie et al., 2018). A way to avoid fears of coercion is to emphasize that participants can skip questions that they do not want to answer and that this will not impact their eligibility for compensation, nor will it impact the eligibility of the person who referred them. The goals of a research project should be in alignment with community goals, which means the risks of coercion are more likely to be balanced with the benefits of the project to the community (Millum & Garnett, 2019).

Non-monetary incentives and compensation should be prioritized when implementing research projects with First Nations communities. While many community members may participate in research for the benefit of the whole community, often these benefits are indirect or take time to come to fruition through practice change, policy implementation, funding opportunities, or development of programming (Kothari, 1997). Researchers should allocate funding to hosting events to connect with community and build reciprocal relationships, covering costs of food, promotional items, gifts, spaces, and honoraria for local speakers, workshop-leaders, and entertainers.

Food and entertainment should be provided at research events. Food can act as a vehicle for relationship-building and reciprocity, and provide a space for community connection (Dunbar, 2017). It is recommended that events provide full meals to attendees rather than snacks. There are many talented artists and entertainers from Six Nations. Supporting artists in the community can incentivize community members to engage in events. This also extends reciprocity to artists by giving them funds and professional opportunities. Additional activities like raffles, giveaways, and games add an element of fun to a research event. Given the complex perceptions many community members have towards research, investing in things that bring joy to research is important for successful engagement with Six Nations.

Knowledge Translation

Knowledge translation is an essential component of any research project. Indigenous people should be included in, empowered by, and have agency over the stories told about them (Estey et al., 2009). Knowledge translation activities should occur that are relevant, effective, and suited to community desires, and should have ample funding set aside to accommodate new approaches. Researchers should ensure that methods for gathering feedback on knowledge translation are built into activities so that these methods can be evaluated and improved upon for future activities.

Publications should be actionable and empower communities (Gittelsohn et al., 2018). Community should be in control of the narrative regarding themselves and their knowledge, acknowledging that harmful discourses controlled by outsiders are prevalent in academia and continue to perpetuate racism and the fallacy of white supremacy. Researchers should also acknowledge that publication may not be appropriate or beneficial to the community and should defer to community ideas about how to present or report their own knowledge.

Relationship With Community

Every First Nations community is different: different cultures, histories, strengths, barriers, needs, desires, and relationships to research (Hill & Coleman, 2019). The first step for any researcher wanting to work with Six Nations should be to spend time getting to know community members, organizations, and leaders. This will help clarify what the community’s research needs are, what approaches and methodologies have been effective and culturally appropriate before, and how the researcher or institute can work to empower the community and support capacity-building for future research projects.

Researchers should employ a strength-based approach in research projects with Six Nations. This means challenging the deficit-based thinking that guides many health equity projects and is prevalent in the narratives surrounding Indigenous communities. Six Nations and other Haudenosaunee communities hold sophisticated networks and knowledge about themselves that should be valued and acknowledged as such (Hill & Coleman, 2019; Thomas, 2022). By investing time to learn about and understand community strengths, researchers can work to empower community ways and ensure their approach is cohesive and relevant to the community.

To advance Indigenous sovereignty in health research, the voices and perspectives of Indigenous peoples need to be included throughout all stages of the research process (Roach & McMillan, 2022). Community experts should be involved in all parts of the research approach, from the initial proposal, to consent form development, survey development, data collection, analysis, and knowledge translation.