“Nothing About Us, without Us.” How Community-Based Participatory Research Methods Were Adapted in an Indigenous End-of-Life Study Using Previously Collected Data

Abstract

Indigenous health research in Canada has a chequered past and has been identified as problematic and lacking in appropriate collaboration with Indigenous people. The Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans, Chapter 9 describes ethical conduct of research regarding First Nations, Inuit, and Métis Peoples. First Nations Ownership, Control, Access, and Possession (OCAP®) Principles highlight the necessity of Indigenous engagement and governance. To ensure that the aims and activities of the research being developed are in full and meaningful partnership with Indigenous peoples and communities, community-based participatory research (CBPR) methods provide a process in which full engagement is possible. Research utilizing secondary data sets, such as routinely collected health administrative data, should no longer be excluded from this approach. Our aim was to describe how our research team of academic researchers and a national Indigenous health organization adapted CBPR methods in a research project using previously collected data to examine end-of-life health care service delivery gaps for Indigenous people in Ontario. We describe the process of how we developed our research partnership and how grounding principles and Indigenous ways of knowing guided our work together. Through the adaptation of CBPR methods, our research partnership illustrates a process of engagement that can guide others hoping to conduct Indigenous health research using previously collected data. We also present a transparent research agreement negotiated equally by a national Indigenous health organization and research scientists, which can also be used as a framework for others wishing to establish similar research partnerships. Ensuring that Indigenous perspectives are central to and reflected in the research process is essential when using health administrative data.

Résumé

La recherche en santé autochtone au Canada a été négligée dans le passé et qualifiée de problématique, notamment en raison du manque de collaboration avec les peuples autochtones. L’Énoncé de politique des trois Conseils sur l’éthique de la recherche avec des êtres humains décrit au chapitre 9 la conduite éthique de la recherche axée sur les Premières nations, les Inuits et les Métis. Les principes PCAP® des Premières nations (propriété, contrôle, accès et possession) soulignent l’importance majeure de l’engagement et de la gouvernance autochtones. En vue d’assurer que les buts et les activités de la recherche développée soient réalisés en partenariat complet et significatif avec les peuples et les communautés autochtones, il est possible de faire appel à des méthodes de recherche participative communautaire (RPC) intégrant leur plein engagement. Les recherches utilisant des ensembles de données secondaires, telles que les données administratives sur la santé recueillies en routine, ne devraient plus être exclues de cette approche. Notre objectif était de décrire comment notre équipe de chercheurs universitaires, alliée à un organisme national de santé autochtone, a adapté les méthodes de RPC dans le cadre d’un projet de recherche utilisant des données recueillies antérieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous décrivons le processus d’élaboration de ce partenariat de recherche et expliquons comment l’intégration des principes de base et des processus de formation du savoir autochtones ont guidé cette collaboration. Notre partenariat de recherche, qui implique l’adaptation de méthodes de RPC, illustre un processus d’engagement qui pourrait guider d’autres chercheurs désirant mener des recherches en santé autochtone à l’aide de données déjà recueillies. Nous faisons aussi état d’une entente de recherche transparente, négociée équitablement entre un organisme national de santé autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s’assurer que les perspectives autochtones soient au cœur des processus de recherche et qu’elles soient reflétées dans ceux-ci lorsque des données administratives sur la santé sont utilisées.

We call upon the federal government, in consultation with Aboriginal peoples, to establish measurable goals to identify and close the gaps in health outcomes between Aboriginal and non-Aboriginal communities…

Truth and Reconciliation Commission (2015)

Background

Among the 94 calls to action in the 2015 Truth and Reconciliation Commission Report (TRC), published reports on health indicators are identified as a necessity to measure and achieve equity in Indigenous¹ health (Truth and Reconciliation Commission of Canada, 2015). Recent adoption of the United Declaration on the Rights of Indigenous Peoples (UNDRIP) by the Canadian government also highlights the rights of autonomy and ownership over the design, delivery, and evaluation of health services by which policies are developed (United Nations, 2007). However, the legacy of research being completed without respectful engagement with Indigenous communities is a growing concern (Tobias, Richmond, & Luginaah, 2013), and has been identified as problematic and lacking in appropriate collaboration with Indigenous groups (Erasmus & Dussault, 1996; MacDonald, Stanwick, & Lynk, 2014; Mosby, 2016; Schnarch, 2004). For Indigenous health statistics to be meaningful, the collection and analysis of data must be performed in partnership with Indigenous peoples, organizations, and government agencies (Smylie & Firestone 2015).

One example of harmful research with Indigenous peoples is the nutritional experiments conducted in residential schools during the 1940s and 1950s, in which Indigenous children were malnourished for the “sake of scientific inquiry” (Mosby, 2016). The Royal Commission Report on Aboriginal People (1996) recognized the problematic use of Indigenous data without the consent of Indigenous people. First Nations communities, in particular, have felt that they have been “researched to death” and have gained very little benefit as a result (Schnarch, 2004). It is no surprise that a lack of trust in research is common among Indigenous people. For this reason alone, it is essential to establish trusting relationships when conducting Indigenous research projects.. To ensure that the aims and activities of the research being developed are in full and meaningful partnership with Indigenous peoples and communities, community-based participatory research (CBPR) methods provide a process in which full engagement is possible. CBPR advocates for the community of study to be a full partner in the research (Israel, Shultz, Parker, & Becker, 1998). Research utilizing secondary data sets, such as routinely collected health administrative data, should no longer be excluded from this approach, as it is essential to engage Indigenous communities and organizations as full participants in the research process.

The Tri-Council Policy Statement on the Ethical Conduct of Research Involving Humans (TCPS-2), Chapter 9 describes ethical research behaviour when conducting research with First Nations, Inuit, and Métis peoples (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada Government of Canada, 2014). These research ethical guidelines align with CBPR in that they highlight the importance of reciprocity when conducting research involving First Nations, Inuit, and Métis people. Historically, research involving First Nations, Inuit, and Métis communities has been primarily conducted by non-Indigenous scholars. As such, concern for empowering the community to attain research skills may not have been an objective of the research process in the past. TCPS-2 states that there is an obligation by researchers to give something back to the community during the research process. In honouring the principle of reciprocity, non-Indigenous researchers would ideally conduct research alongside of Indigenous researchers. In an even more ideal world, Indigenous research would be led by Indigenous community needs. Respectful engagement with Indigenous communities from the outset of the research project is stated as an essential requirement, and a collaborative and participatory research process is encouraged. Participatory action research is defined by TCPS-2 as a process of collaboration from the design of the research project, to the collection and analysis the data, to the production of a final product to an action based on the results. TCPS-2 describes this research process as being “based on respect, relevance, reciprocity and mutual responsibility.”

First Nations’ principles of data governance are specified by the First Nations Information Governance Centre (FNIGC) in Ownership, Control, Access, and Possession (OCAP^®) Principles. These research ethical principles assert that First Nations data must be owned, controlled, accessed, and possessed by First Nations. The first principle refers to a First Nations community’s right to own their own information, whether that be cultural knowledge or data. The second principle attests that First Nations control the research process from its inception to the finalization. The third principle indicates how and when First Nations people can access their own information and data. The fourth and final principle of possession refers to data stewardship and refers to “the physical control of the data” (First Nations Information Governance Centre, 2014). It is important to note that OCAP principles may not necessarily apply when the study population represents either Métis, Inuit, or a mix of all the Indigenous groups.

Engagement of First Nations, Inuit, and/or Métis communities in the ways described can mitigate the harms of research involving Indigenous peoples that have been noted in the past, such as disregard for Indigenous ways of knowing, misinterpretation of the truth, further stigmatization, and marginalization (Schnarch, 2004). The risk of such harms can be even greater when conducting research involving secondary analysis of routinely collected health administrative data, which in most cases were collected in the absence of collaboration or consultation with Indigenous people. In the case of conducting research using routinely collected health administrative data, in which individual identity is erased and data are anonymized using encrypted health card numbers, it is not possible to identify a community with which to engage in the way that is intended using community-participatory research methods. For these reasons, it may be challenging to apply CBPR methods as described in TCPS-2, Chapter 9 in these situations in which research is conducted using previously collected data. OCAP principles may be relevant for conducting primary research with First Nations communities and organizations, but require adaptation when using previously collected data.

Formal agreements between Indigenous communities/organizations and non-Indigenous institutions have been developed to describe the oversight, decision making, legislation, policies, procedures, protocols, and practices that define the management of data. The formal agreements in the form of data governance agreements may also be intended to ensure that, “regardless of where data is stored…it is protected and provides meaning and value” to First Nations groups (Mustimuhw Information Solutions Inc., 2015). Data governance agreements have gained acceptance in recent years (Bruhn, 2014), particularly between government agencies and Indigenous communities and organizations (Dudgeon & Kristjanson, 1995; Government of Newfoundland and Labrador, 2007; Tripartite Project Coordination Team, 2016). Despite the recognition that applying the research ethics principles in TCPS-2, along with the First Nations OCAP Principles, is essential when conducing Indigenous health research (Campbell, 2014), how to operationalize the concept of data governance and research ethical principles when data were previously collected may pose a challenge to researchers.

Objectives

Our research partnership formed to identify gaps in end-of-life health care service delivery to Indigenous people who received provincially funded home care services in Ontario, Canada. It is well known that most people prefer to die at home or in their communities (Dudgeon & Kristjanson, 1995; Fraser, 2016; Habjan, Prince, & Kelley, 2012), but the extent to which these end-of-life preferences are actually experienced by Indigenous peoples in Ontario on a population level is not known. The objectives of our research study were to describe end-of-life places of care and places of death for Indigenous people in Ontario who received provincially funded home care services, through the analysis of routinely collected health administrative data held at The Institute for Clinical Evaluative Sciences (ICES). This article will illustrate how our research team adapted community-based participatory research methods to conduct research using routinely collected data from health administrative databases in a population-level research project examining end-of-life care for Indigenous peoples in Ontario, Canada.

We will detail our steps of engagement, including the involvement of a national Indigenous health organization. Through this process, our research team adapted some the well-known guidance documents and principles to guide our partnership agreement, which could support the goals of the research while protecting the rights and knowledge of Indigenous communities. By setting us on a good path, this partnership agreement provided a frame for working together to answer our research questions.

Creating a Collaborative Framework and Research Agreement

Dilemma Using Previously Collected Data: Who is the “Community” with Which to Collaborate?

Our research partnership was initiated by an academic research team, including two First Nations researchers who reflected on the need to involve an Indigenous organization that had a mandate for First Nations, Inuit, and Métis collective priorities in relation to palliative care and home care. As a result, a relationship with the Canadian Indigenous Nurses Association (CINA) emerged based on our mutual interests in the area of palliative care. A formal partnership was then established to meaningfully reflect both academic and Indigenous-led research priorities, values, and ways of knowing. CINA identified a need for this research to support their work in addressing frontline and health policy issues related to providing quality end-of-life care for Indigenous peoples in Canada.

Our partnership was formalized via a research partnership agreement. The first process of creating the research partnership agreement took eight months, from initial draft in September 2016 to signing the final version (see Figure 1). In February of 2017, following a tobacco offering (a traditional gesture when making a request from a respected Knowledge Holder) to the CINA Research Committee chair by one of the academic First Nations researchers, the research agreement was signed at a face-to-face meeting at the Wabano Centre of Aboriginal Health in Ottawa, Ontario. The research team then applied for ethics clearance, which was received in May of 2017.

Figure 1: Timeline of engagement, first introduction to ethics approval

Establishing Guiding Principles

Prior to conducting the research, we spent a great deal of time establishing the guiding principles that would underpin our research and the ways in which the research partners would work together. As research partners, we determined that our relationship and project should be grounded in UNDRIP (United Nations, 2007). UNDRIP describes the rights of Indigenous people in 41 articles, several of which apply to health, which are to be recognized by states of the world. UNDRIP recognizes the rights of Indigenous people to establish their own priorities and improve their own health. For us, this meant that our research objectives and questions would reflect the priorities of Indigenous people as represented by CINA as full and equal partners in the research process.

The principle of two-eyed seeing was another important principle that guided how we would work together. This principle recognizes the importance of respecting both Indigenous and Western ways of knowing (Bartlett, Marshall, & Marshall, 2012). For us as research partners, this meant that all researchers in the partnership had something important to contribute and that Western approaches were not viewed as superior to Indigenous ways. All members of the research team were considered equal, and decisions were made based on consensus. Both of these guiding principles were explicitly stated in our research partnership agreement.

Adaptions of CBPR, TCPS-2, and OCAP

Our research process was guided by CBPR and TCPS-2, which require researchers to collaborate with “the community under study” from the inception of the research project. According to the TCPS-2, community is described as a collective group of individuals or organizations with mutual interests, which is what our partnership was based on. Prior to conducting the research, the research partnership agreed on objectives and research questions, which were then formalized in the research agreement. As this study was a population-level study using routinely collected health administrative data housed at ICES, the academic researchers arranged for the epidemiological analysis of the data. Once the analysis was complete, the research partnership met to review the results. Long discussions were had about how to interpret the data. Ways to mitigate any stigmatization of Indigenous people were agreed upon. The importance of understanding the limitations of the data was raised and discussions were had on how to best present these limitations. Final products of the project were collaboratively created (i.e., conference poster presentations, oral presentations, and journal manuscripts). No materials were disseminated outside the research partnership without the awareness and agreement of all parties. There has yet to be a situation in which consensus by verbal agreement could not be achieved.

OCAP principles informed our research partnership, however, as we were not doing primary data collection, we only specified ownership in our research partnership agreement. We interpreted ownership as referring to the results and products of the research project. Within our agreement, we formalized what we meant by ownership. As a partnership, we agreed that we would co-own all products of the research.

Details of the Research Partnership Agreement

We based our research partnership agreement on the now-archived Canadian Institute of Health Research (CIHR) Guidelines for Health Research Involving Aboriginal People (Canadian Institutes of Health Research, 2007), which contained a research agreement template that provided the structure that our research partnership used. This structure contains sections regarding the parties to the agreement between the researchers and the community involved in the research; the purpose, scope and methods of the research project; a description of how researchers will interact with the community during the research process; specifics about data collection, sharing, distribution, ownership and storage; and funding, benefits, and commitments.

Initially, we needed to adapt the template provided by CIHR, as it was created for projects that involved primary data collection between a First Nations, Inuit, or Métis community and an outside organization, and did not reflect the nuances when using previously collected data. Sections of our research agreement were adapted to allow for appropriate wording changes when referencing academic researchers (“research scientists”) and research partners within CINA (“leadership, research chair/knowledge holder/knowledge user”). The following sections were included in our research agreement: intent of the document (details of the project and the terms of collaboration); parties to the document (details about what the research agreement pertains to); ownership; ethics approval process; and funding, benefits, and commitments (See Appendix).

Intent of the Document

This is an opening section that described who the research partners are and the intent of the agreement, which lay the foundation of how the research team would conduct the study (i.e., incorporate principles of two-eyed seeing, TCPS-2, and OCAP).

Parties to the Document

This section describes the members of the research partnership. It also declared that the parties agreed to conduct the research in a collaborative partnership and through processes of consensus. This section also included how the research team agreed to conduct the research project, and listed what the understandings of this conduct would be. For example, this section described the project, its methods, anticipated outcomes, and approvals. This section also described the participation of research team members. For example, partners agreed to ensure that Indigenous perspectives would be considered in all aspects of the research, from the cultural appropriateness of data gathering to the interpretation of results to identifying potential harms and the co-development of mitigation strategies. The research team also worked together to approve the research protocol, identify additional research questions, and embed wherever possible and plausible the practices and protocols of Indigenous peoples. Additional important details of the research agreement included a disclaimer indicating that each step of the research would ensure that the concerns raised by Indigenous partners were addressed, and that recommendations were incorporated. Rules for information sharing and knowledge translation of the research and research outcomes, such as how the research team would communicate with media and how publications would be managed, were also outlined.

Ownership

This section specifies the co-ownership of the research and research results by all members of the partnership. Ownership, in these contexts referred to the translation of knowledge and information, including conference presentations and manuscripts.

Ethics Approval Processes

The processes to obtain ethics approval through the academic and health care institutions were described in this section.

Funding, Benefits, and Commitments

This section describes issues commonly associated with academic research, including the naming of the Ministry of Health and Long-Term Care (Ontario) and CIHR as funders of the project, and the statement that no financial contributions were required by the Indigenous organization.

Benefits

Benefits specific to academic team members and the Indigenous organization were described in this section. Benefits to the research team included peer-reviewed publications and conference presentations. Benefits to the Indigenous organization included those related to the work and outcomes of the study: using results as a basis for development of health education resources, authorship in associated reports and manuscripts, and collaboration with scientists using large databases, as well as possibilities for future research collaborations.

Commitments

Commitments by both the research team and the Indigenous organization were also described in this section. Indigenous organization commitments included support for community engagement, culturally relevant and appropriate interpretation of data (as appropriate), co-authorship of publications and oral presentations, the inclusion of Indigenous perspectives and interpretation of findings, and expertise in relation to culturally specific knowledge and information regarding study outcomes.

Research team commitments included informing CINA about the progress of the study; ensuring First Nation, Inuit, and Métis Elder/Knowledge Holders were acknowledged as was determined appropriate through the CINA Research Committee; and sharing opportunities for CINA to contribute to the knowledge translation and exchange of research outcomes.

Being that our study analysed health administrative data housed at ICES, the technical aspects of the study, such as epidemiological data analysis, were done by data analysts employed at ICES. Data analysts then supplied researchers with tables of results. Because the connection to ICES was primarily via the academic researchers, it was their commitment to the research partnership to keep CINA apprised of the progress of the analysis. When results were made available, the entire partnership met to review and interpret the results and CINA offered valuable insight into how to best interpret and document the findings.

This section also declared under what circumstances the research team might agree to interruption of the research, such as a decision by team members to withdraw their support or a conflict whereby culturally appropriate processes of consensus building could not be reached.

Discussion

In order to operationalize research ethical principles in the TCPS-2 and OCAP, we opted to adapt CBPR processes. We did so because CBPR is a well-established research method that recognizes the community as an equal partner in the research process. It is simple to conceptualize the CBPR process when thinking of studies involving specific Indigenous communities, in which the research in question is addressing a community concern, particularly in qualitative research. For example, over the last few years, Six Nations of the Grand River has completed some community projects with the Centre for Community Based Research (CCBR) designed to improve health services in their First Nation community (Botschner & Lomotey, 2002; Fruch, Monture, Prince, & Kelley, 2016). These studies describe how the First Nations community was a full partner in the project from inception to finalization. One study (Fruch et al., 2016) examined how to improve palliative care services in the community. The study describes how the need for this study was community driven and how academic researchers supported the community to conduct the research. The study was led by a community advisory committee, and the research was facilitated by a community member and resulted in a successful palliative care program in the community. This study illustrates the importance of reciprocity in the research process, through which researchers are giving something back to the community and not simply conducting research to advance their own academic futures.

In our project using previously collected data, we had to creatively adapt CBPR methods. We built our partnership around the principles of “respect, relevance, reciprocity and mutual responsibility” (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada, 2014). In terms of respect, our research partnership recognized the unique skills each of us had to bring to the project. It should be noted that there is a risk when not partnering with Indigenous organizations (or communities) when conducting research using previously collected data, as it is unlikely that the research, discussion, or conclusion would reflect Indigenous perspectives. Non-Indigenous partners in these endeavours must understand the subject matter in order to ensure that research results have meaning for the needs and concerns of Indigenous peoples. For others thinking of conducting this type of research, when pursuing a research partner, it would be ideal that the partner represents the voice of the Indigenous groups identified in the study and understands the subject matter, that the area of research is meaningful to the partner, and that the partner can help disseminate the findings through its communication channels.

As an example, in our study, an “aboriginal” flag in the home care base was used, and for this reason a partnership with CINA, an Indigenous health organization, was sought to provide First Nations, Inuit, and Métis perspectives about data analysis in the end-of-life care study for Indigenous peoples. Possessing an understanding of Indigenous statistics and end-of-life and home care-related issues for Indigenous peoples, CINA was able to pose important research questions for the study that could then uncover how home care services and places of death for Indigenous peoples differ from the services provided for non-Indigenous peoples. Recognizing that the results of this study may support further work leading to changes in health policy, CINA, as the national representative body for Indigenous nurses across Canada, may best inform the changes needed to improve end-of-life care for Indigenous communities.

In terms of relevance, CINA was the community with which academic researchers partnered. CINA became involved early on in the process, which enabled them to shape the research objectives and questions. As our research project focused on end-of-life health care use and places of death, inclusion of CINA in the research partnership allowed for the community perspective of providing end-of-life care to Indigenous people, particularly as it related to home care nursing and allied health services. CINA partners also contributed to analysis and interpretation of the results, advising us how best to reduce any potential stigmatization of Indigenous peoples.

In terms of reciprocity, all members of the research partnership gained knowledge regarding gaps in end-of-life care for Indigenous people in Ontario who received provincially funded home care services. One limitation of our study in not embracing all principles of CBPR was the result of the technical requirement of having the epidemiological data analysis performed by data analysts employed at ICES. Future studies using previously collected Indigenous health data could consider a mechanism whereby Indigenous research partners gain skills in such data analysis. Organizations engaged in such types of data analysis may even consider training and employing Indigenous people. Such efforts would work to address additional TRC calls to action.

Whether one is conducting community-based research or using Indigenous identifiers in health administrative databases, it is essential that the research and outcomes are reflective of Indigenous needs and challenges. One way to identify these needs and challenges is through equitable and meaningful partnerships with Indigenous organizations. By enabling Indigenous organizations to inform the processes for respectful engagement in research, all parties can benefit from the work. Research agreements, developed in partnership with Indigenous organizations/communities may then outline research processes that respect the principle of self-determination by Indigenous peoples through meaningful involvement in all stages of the work, and that avoid further potential stigmatization and harm of Indigenous peoples via the research, its processes, or its outcomes. By adhering to these principles, research partnerships can ensure mutual responsibility to each other and to the results of the research.

The use of routinely and/or previously collected data (e.g., survey data from the Canadian Community Health Survey, First Nations Information Governance Centre Regional Health Survey, health administrative data linked to Indigenous registries) can be used to identify health care gaps in elder care and end-of-life care for Indigenous people. Never before has there been a time where this has been more important, as the Indigenous population in Canada is estimated to age at a faster rate than the general population. It is estimated that by 2031, the proportion of Indigenous seniors will triple (Caron Malenfant & Morency, 2011). In using these previously collected data sets in this way, the research world can contribute to the TRC calls to action and identify health care gaps. However, this research world must no longer consist of non-Indigenous researchers conducting research on Indigenous people. Instead, researchers must recognize that harm and further stigma can unintentionally occur if Indigenous perspectives are not included in the research, and that the best way to avoid harm is to involve Indigenous organizations/communities as equal partners as early in the research project as possible. Through collaborative processes, research questions can be designed that are both culturally sensitive and that do not further stigmatize Indigenous peoples. Also, early collaboration also means that Indigenous groups can shape the research to best address their community and/or health policy concerns.

Conclusions

Engaging Indigenous communities and organizations is essential to research studies focusing on Indigenous health that utilize previously collected data, such as those routinely collected in health administrative databases, as this ensures that Indigenous cultural perspectives are central to and reflected in the research process.