fletcher 2003

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Community-Based Participatory Research Relationships with Aboriginal Communities in Canada C. Fletcher

Pimatziwin: A Journal of Aboriginal and Indigenous Community Health 1(1)

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INTRODUCTION

In Canada, community-based participatory research (CBPR) has devel-oped as a responsive and responsible research method in tandem with the

growth of Aboriginal political autonomy at the community, national, andinternational levels (Brant Castellano 1993). As Aboriginal people have exer-cised increasing authority over events in their own communities the role of research and researchers in perpetuating historical injustices and in main-taining the inadequate statusquo has been questioned.In general these assess-ments point to the his-

torical role of researchin generating the difficult conditions within many

Aboriginal communitiesand in helping shapethe political structure of internal colonialism that characterizes the rela-tionship of Aboriginalpeople with the state. It also reflects the criticalreading that science andsocial science writing has been given by Aboriginalpeoples as they master the languages of these disciplines.

A characteristic of the so-called postmodern condition is a skepticismabout the encompassing discourses of the past; nationalism, race, politicalideologies, and techno-scientific progress among them. This is reflected in theshift in value accorded to non-scientific knowledge and is characterized bya renewed effort to catalogue, incorporate, and understand biological (andother) information that is presented in non-scientific jargon. In work with

Aboriginal communities in Canada this work has often focused on TraditionalEcological Knowledge or “TEK” research and involves collecting accounts from

people about the cultural body of knowledge of, and first hand experience with, the lived environment. Of course, it is not only ecological knowledge which is “traditional.” A great deal of culturally informed knowledge, includ-ing that of health, has been framed in this manner. People around the globeare faced with similar issues in the interpretation and use of local knowledge

ommunity Based ParticipatoryResearch (CBPR) is an important tool foresearchers working with Aboriginal and

indigenous communities. It acknowledg-es the different ways of knowing, givingequal weight to scientic expressionsof knowledge and traditional or culturalexpressions of knowledge. In the past,esearchers have often assumed thatraditional knowledge was less impor-ant than scientic knowledge. Theerm Traditional Ecological Knowledge

(TEK) refers to the cultural knowledgeof people living within a particular en-vironment. Thus, the TEK of the Inuitwill e different from that of the Plains

ree because their environments are



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Community-Based Participatory Research Relationships 29

by individuals who are not part of the local community. This process is in-evitably open to misunderstanding, co-optation and misrepresentation. Asa result, indigenous people are increasingly concerned about how the trans-mission of knowledge itself will come to influence the environments they live

in. Consequently, mechanisms need to be established to manage the perspec-tives of different people and orient their impact.

he collection and application of non-scientific information to con-emporary issues like envi-

ronmental concerns is not a transparent process. It requires new communi-

cation frameworks andawareness of social fac-tors that many scientistsare unfamiliar with intheir work. At the veryleast it requires meth-ods that allow informa-tion to flow between

the scientific and localcommunities in a mutu-ally intelligible manner.CBPR is one element of that process and is

critical to building produc-ive working relationships

between Aboriginal and scientific communities.

his paper presents a broad overview of the conditions in which CBPR methods have developed, a framework for implementing this approach andsome practical considerations for conducting research in Aboriginal com-munities. The information presented here is an attempt to transpose someof the current practice in social and human sciences to areas where CBPR

would seem to be less applicable and where researchers tend to have less, if any, training in community based research methods or theory. While this pa-per aims at a general description of CBPR it was written with an eye towardsmulti-disciplinary research involving Aboriginal communities in NorthernCanada. The presumed audience is people with little experience working closely with Aboriginal peoples but who have an open mind to other ways of seeing the world.

different. This knowledge is generallyexpressed and understood in non-scien-ic terms; that is, it has been acquiredhrough lived experience, rather than a

process of experimentation to verify anidea.

BPR provides a framework forlending TEK research with scienticodels to produce productive workingelationships between Aboriginal and

scientic communities. The purpose ofhis paper is to describe the principles

of CBPR and provide some guidelines forits use. In this way, scientic research-ers and Aboriginal communities mayachieve deeper and more appropriateunderstandings together.



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he material presented here is based in part on the available literature, andin part on my professional experience as an anthropologist who has workedclosely with Aboriginal communities and organizations in Northern Canadafor the past decade. I would like to acknowledge the influence of publications

by the Dene Cultural Institute on the material presented in this report. Myoverall objective, and that of researchers who have conducted participatoryresearch with Dene communities, is to argue that despite the tense relation-ship that can at times shroudrelations between researchersand Aboriginal communities,

when properly organized

and conducted researchhas the potential to ben-efit all people. In orderfor this to occur the so-cial and political contextsin which research takesplace must be recognizedand their influence in-

corporated into researchquestion development,project design and thedissemination of results.

While this may seem likeextraneous information tosome researchers, I believe, and it is my experience, that it has the potential tofoster productive working relationships and generate original research. Most

researchers are enthusiastic about what they do and share that enthusiasm with a relatively limited number of like-minded colleagues. CBPR methodshelp in part to transmit that enthusiasm to the non-specialist and produceresults that carry significance for all involved.

O VERVIEW OF COMMUNITY -B ASED P ARTICIPATORY

R ESEARCH

Community-based participatory research (CBPR) developed out of thehistoric confluence of changing political structures in newly independent countries in what was then referred to as the “third world,” and the experi-ences of development workers in those countries.

In writing this paper, I have usedpublications written by other people (thescientic approach) and my own profes-sional experience as an anthropologistworking with Aboriginal communities. Ihave particularly relied on publications y the Dene Cultural Institute, as notedin the references. See the section onAdditional Resources at the end of thispaper for an expanded list of referenc-es kindly provided by ananonymous reviewer.



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We can trace the origins of CBPR to a current of thought and praxis ineducation, development, social sciences, and health work that recognized thenecessity of incorporating local realities into program design in all aspects.

The philosophy behind CBPR has evolved significantly since the 1970s at the

insistence of indigenous peoples’ organizations. The scientific community isnow much more likely to talk about doing research for and with Aboriginalpeoples than on them as was the case in the past. At a minimum CBPR meth-

ods recognize the capacitiesof community experts toinform research design, de-

cision making processes

and effect meaning-ful change. The evolu-tion of CBPR is closelylinked with adult educa-tion movements whichequated literacy andskill development withpolitical empowerment

(Hall 1981, 1988). TheCBPR approach grew out of particular politicalfervor of post-colonialchange in the develop-

ing world. Its philosophy wasquickly incorporated in North American in situations where research wasconducted with marginalized groups, ethnic communities and Aboriginal

peoples. In developed countries, CBPR responded to a diverse series of criticalperspectives on science and research which portrayed them as cultural prac-tices embedded in a structural foundation of entrenched social and politicalinequity. These critiques are united in suggesting that knowledge creation isan ideological process that tends to reproduce the structural conditions in

which the knowledge originates — a direct challenge to the positivist anduniversalist views of science and scientific knowledge that prevail.

he CBPR model draws together the concept of sustainable development with grassroots political organization and local empowerment. One of themost important acknowledgments it makes is that “development” is not alinear process represented by the history of western industrialization, but rather that there are “developments”; kinds, shades and flavours of economic

ommunity-based participatory re-search began in the 1970s, as research-ers began to understand the importanceof including local conditions and commu-ity experts in designing their research.

In the decades since, awareness of thecultural implications and foundations ofall knowledge, has persuaded research-ers to conduct their studies in part-ership with communities. In this way,esearch designs are no longer based

solely on Western science, but incorpo-

ate Aboriginal and indigenous ways ofnowing. As a result, everyone benets.



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systems and change that can enhance — or undermine — the social, culturaland ecological contexts in which they are situated (Escobar 1995). In thisperspective, development oriented CBPR became concerned with identifying the kinds of change that are appropriate to local communities and helping to

provide tools for people to implement constructive change for themselves.CBPR is a philosophy and method that seeks to engage people and com-

munities in all phases of research from the conceptualization of the researchproblem to the dissemina-tion of the results. At its coreit is about relationshipbuilding between diverse

communities, contrib-uting to local self-suf-ficiency, and recognizing the inequities that ex-ist between people andplaces. It is oriented tothe application of practi-cal knowledge to locally

defined issues in a waythat provides long-termimprovement in thequality of life of a groupof people be that physi-cal, intellectual, interper-sonal, or political. The approach accepts first and foremost that all inquiry ispolitical by definition; information does not exist in a vacuum but is gener-

ated within a specific articulation of power and is interpreted within the con-fines of established intellectual structures. As a philosophy, CBPR is inclusiveof different ways of seeing the world. It incorporates multiple perspectives.It recognizes local knowledge systems as valid on their own epistemologicalfoundations and views them as contributing to a larger understanding of the world and the place of humans in it. It takes as an a priori assumptionthat research and science are not value free. They can be used to help peoplehelp themselves in their daily struggles or they can be used to subjugate localopinion and action.

Clearly science is a powerful tool in political action and we should not make the mistake of relativizing away the differences between knowledgesystems at that level. Aboriginal communities need and use science and re-

ommunity-based participatory re-search emphasizes the importance ofcontext to knowledge: money, politics,culture, and environment all inuenceour perceptions of the world arounds. Academic and health professionesearchers see the world in a very

different way than Aboriginal peoples.For a long time, researchers failed tonderstand the signicance of the con-

text of knowledge. Their way of know-ing was “obviously” the “right” way and

the only one they considered.BPR emphasizes the importance

and value of different ways of knowingaccording to context. CPBR researchersare careful to make the community con-



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search of many kinds and in a variety of contexts. The current challenge to Aboriginal peoples and the scientific community is to articulate the different ways of understanding in a mutually beneficial way.

T HE POLITICAL ECONOMY OF D ATA

In North America, community based participatory research (CBPR) in Aboriginal communities has developed in the context of land claims nego-

iations and impact assess-ment of large scale industrial

projects. These politicallycharged milieu have gen-

erated new meaningsand controversy aroundhe collection, analysis

and interpretation of a variety of kinds of data. Aboriginal people andtheir organizations haveargued that interpretive

frameworks are influ-enced by non-Aboriginal

world-views and that if their perspective wastaken into account

much would be different. InCanada, the Berger Inquiry of the Mackenzie Valley Pipeline project (Berger1977) represents a landmark in incorporating Aboriginal perspectives in a

political/developmental context. In effect it was the first time that the plan-ning for a major development project considered the impact on Aboriginallifestyles and heard first hand the opinions of Aboriginal people. The Inquiryreport made the connection between Aboriginal occupation of land, envi-ronmental integrity, and human well-being, closing the artificial distinctionbetween social and ecological frames of reference. The Berger Commission’smethods of direct consultation on social and scientific issues have been ad-

opted in many spheres of research, including health. The Berger Inquiry re-placed the popular conception of Canada’s north as an uninhabited resourcefrontier with the awareness of the north as homeland for Aboriginal people.

The appreciation of perspective has subsequently gained considerable cur-rency in efforts to understand the nature of the environment as it is experi-

ext an integral part of their researchdesign. Because each way of knowinghas value, each must be included.

North American Aboriginal com-munities have been focussed on thepolitical issues of land claims, and envi-onmental impact assessments for large

industrial projects. These communitieswere directly consulted for the rstime with The Berger Inquiry of the

Mackenzie Valley Pipeline Project in1977. The Report which resulted from

hese hearings made a clear connectionetween human occupation of land, or

social factors, and the environmentalintegrity of the land, or the ecologicalfactors.



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enced, the importance of this to individual well-being and community integ-rity, and the meanings attributed to development in the frontier/homeland(Hoare, Levy, and Robinson 1993).

PHILOSOPHIES OF SCIENCE:DISTINGUISHING M ETHOD AND CONTEXT

Community-based participatory research (CBPR) should not be viewedas a management tool for dealing with Aboriginal communities but anopportunity for Aboriginalpeoples to influence themechanisms that affect

life in their communitiesand on their lands.

One of the funda-mental beliefs that sci-ence generates about itself is that it producesobjective knowledge that is free from extraneousinfluence. For people in

Aboriginal communitiesin Canada science andresearch have been in-separable from politicalprocesses, resulting in theireconomic, political and phys-

ical marginalization since the earliest contacts with non-natives. The scien-tific method may promise verifiable observations of an objective reality but it does not operate in such an environment.

While training in scientific method stresses its objectivity — and theneutrality of the information thus produced — there is little examination of the contexts in which some kinds of information are generated and othersare not. Academic critics of science have described science as a social processand pointed to the ideological role that it plays in creating and maintaining

specific social and economic realities. Science is a highly authoritative formof discourse that demands an uncritical acceptance of the knowledge it pro-duces and promotes the value of that knowledge as superior to other ways of understanding. When we take into account the experiences and perspectives

nowledge produced by scienceand the scientic method of reproduc-

ible experiments is often thought of asvalue-free or objective and, therefore,etter than all other ways of knowing.

Only recently have researchers beguno consider that science is practised y people and people inevitably are in-uenced by their values. In fact, they

are often so inuenced by these valuesand beliefs that they ignore the resultsof their own research or misinterprethem. In the case of research affecting

Aboriginal people, scientists have madeassumptions based on their personalcontexts, rather than the context of



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of peoples who have different intellectual traditions, we see how socially im-bued scientific neutrality actually is. An uncritical acceptance of science hasobscured the political processes which result from the knowledge it produces.

At its simplest level the association of objective data, derived through scien-

tific method, transmits an air of rationality and naturalness to the actionbased on that data, shielding it from critical scrutiny.

cience has served us well helping, in part, to create a society of unparal-leled wealth. This has been achieved through the progressive conversion of elements of nature into resources with value attributed to them by culture.

However, for people whodo not share in a long

tradition of this world view, and who have not naturalized this perspec-tive through culturalmechanisms, science canbe seen as a tool of ma-nipulation and margin-alization. Despite this,

in the past couple of decades Aboriginal com-munities have come tosee the benefit of using scientific arguments to

advance their own social andpolitical objectives. Taking account of the Aboriginal

critique of science we gain the opportunity to redesign its practice in a way which contributes to social well-being in Aboriginal communities ratherthan undermining it.

A BORIGINAL POLITICAL A UTONOMY AND

SCIENTIFIC R ATIONALITY

An important factor in the development of an Aboriginal critique of sci-

ence has been the frequent direct contact Aboriginal peoples have had withresearchers of all sorts. Their experience with research often paints an unflat-tering portrait at a number of levels. Stories about individual experiences

with researchers circulate within and between communities exposing a nega-tive side of scientific practice. Other stories do not circulate widely because

the Aboriginal communities they wereresearching.

Science has given North Americansociety greater physical control overthe environment and this has madegreat wealth possible for those whohave been brought up to value it. Toshare the wealth, it is also necessaryto share the view of the world whichcreated it. Aboriginal societies havedeveloped from a very different view ofthe world. They come to the practice ofscience with the intent of using its lan-guage and methods to serve more tradi-tional purposes.



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they are too humiliating to recount, but remain in the collective experienceof Aboriginal communities with the mainstream Canadian population.

In many cases research methods were offensive at an individual level,unaware or uncaring of cultural norms of interpersonal behaviour and re-

spect. These individual experiences are today interpreted as evidence of thepowerlessness of Aboriginal peoples. They also support the perception that to non-natives Aboriginal culture is insignificant, a nuisance variable to becontrolled for. For some peo-ple, their experiences withresearchers are often part of a lifetime of humiliating

and alienating interac-tions resulting from in-stitutional, implied andovert racism. In manyplaces there is a legacy of ill feeling and profoundpain that has grown out of the historical process

of being the objects of re-search (Oakes and Riewe1996). A new relation-ship between researchersand community shouldat least be aware of this andtake active measures to address and rectify historic injustices.

At the federal level, the experience of Aboriginal people with economic

and territorial marginalization has been based on the collection of vital sta-tistics about them. The importance of number gathering is paramount toexerting state level control over people (O’Neil, et al. 1998). Without a nu-merical knowledge of people, wildlife, trees, minerals and so on there cannot be governance. This is not a theoretical abstraction for people in relativelyisolated communities, this is how colonization was experienced. The legacyof ethnic inclusion and exclusion based on the listing of people in different bureaucratic categories and the association of vital statistics with them stilldetermines the manner in which resources are allocated to communities andindividuals. This is clearly demonstrated on the front page of the March 1999issue (V.2, N.2) of Tipatshimun, “Voice of the Innu Nation,” which is entirelydevoted to discussion of acquiring status in the eyes of the federal govern-

In the past, researchers came toboriginal communities with assump-ions that biased their interpretation ofesults and inuenced their attitudes.

Unable to see the meaning in Aboriginalcustoms, they assumed there wasn’t any.

his created a legacy of humiliation andanger. Slowly, researchers are coming tosee that methods such as CBPR make itpossible to be respectful of Aboriginalustoms without losing the strengths

of the scientic method. Scientists are

learning to recognize the contributionsof traditional knowledge. As Aboriginalpeople learn the skills of scientic re-search, they are able to work with their



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ment. Status is, of course, a bureaucratic, not social, distinction that requiresenumeration.

o summarize, research in its current manifestations cannot be divorcedfrom the political context of research in the past or from the distribution of

power today (Flaherty 1995). To accumulate data about people and/or thelands they occupy is an exercise which attributes authority to those who holdand interpret the data. Interpretation imbued with the authority of scientific

discourse allows for the ratio-nalization of action that maynot serve the interests of the

people studied, at least

from their perspective.Consequently, Aboriginalcommunities and orga-nizations are exercising different levels of con-trol and ownership overresearch agendas, datacollection, interpreta-

tion and dissemination.Rather than viewing thisturn of events as coun-ter to scientific prin-ciples, some researchers

have incorporated the goals of Aboriginal communities with-

in their research agendas. Alternative approaches to research like CBPR have

developed that take into account the relations of power implicit between Aboriginal communities, researchers and the places they come from. Whenproperly conducted research can be conducted with methodological rigorand with contextual sensitivity.

A FRAMEWORK FOR COMMUNITY -B ASED

P ARTICIPATORY R ESEARCH

he basic principles of CBPR as they relate to working with Aboriginalcommunities include:1. Acknowledge and address the imbalance of power between Aboriginal

communities; the state and its institutions; universities and researchers;

communities in ways which maximize thestrengths of both viewpoints.



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2. Focus research onto issues of import to community members;

3. Accept the diversity of ways of seeing and understanding the world aspositive;

4. Foster the development of local autonomy within the community andbeyond;

5. Develop capacities within the community that contribute towards self-sufficiency and self-determination;

6. Engage community mem-bers as equal stakehold-ers in the researchprocess;

7. Encourage equitableand sustainable de-

velopment throughresearch;

8. Approach researchas an opportunity toprovide public educa-

ion about researchin general and theissue at hand;

9. Respect the ethicalguidelines establishedby organizations that rep-resent the interests of Aboriginal peoples.

here is no single method of conducting CBPR: the approach is character-ized by a flexibility of thought and action which was not present in classicalscientific research. Consequently, the framework for developing and main-taining a working relationship with a community presented here is an openended model to be reviewed and modified as each situation requires.

COMMUNITY GUIDELINES AND CONTROL OVER THE

R ESEARCH A GENDA

As Aboriginal communities have gained political autonomy they havebeen quick to assert their right to control the flow of research conductedin their communities. These efforts have in some cases led to a formaliza-

Some Canadian Aboriginal communi-ies, particularly in Nunavut, Northwest

erritories and the Yukon, have devel-oped a political process for research

which requires that community con-sent must be obtained in the form ofa license before any research can bendertaken. While this is a good begin-ing toward collaborative research, it

is important that the collaboration bemaintained throughout the processes ofdata collection, data analysis and the

reporting of results.



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tion of the research process in Aboriginal communities. For example, in theNorthwest Territories licensing guidelines have been established that requirecommunity consent before research can be undertaken. Similar arrange-ments exist in the Yukon and Nunavut. While formal licensing procedures

have not been developed in Northern Quebec or Labrador, research normallyundergoes a community vetting process and is overseen by political organiza-tions and institutions under Aboriginal control. In most cases a communityconsultation process and researcher conduct guidelines are agreed to beforethe research has begun. A dissemination strategy should also be included inthis process. While these measures assert a degree of control over what kindsof research go on in communities, care must be taken throughout the life of

the research project to build and maintain community participation, trust and interest. Licensing and formal approvals are the very beginning of thecommunity-based participatory research (CBPR) process.

everal Aboriginal political and cultural organizations have worked tochange the nature of community-based research beyond the licensing andcommunity approval guidelines. The Dene Cultural Institute has been at theforefront of this effort. In their work to document and protect TraditionalEcological Knowledge (Johnson 1992) they have generated a series of guide-

lines for conducting CBPR on TEK in Dene communities (Dene CulturalInstitute 1994, Masazumi and Quirk 1993). These provide an effective frame-

work for CBPR. In this section of the report the CBPR process will be describeddrawing extensively from this and related material (Association of CanadianUniversities for Northern Studies 1988; 1998, Inuit Tapirisat of Canada 1993).

1. ESTABLISH CONTACT , DEVELOP A WORKING RELATIONSHIP

he first and most critical phase of a community-based participatory re-

search (CBPR) project comes in the initial contacts. In many cases these first encounters establish the tenor and style of a working relationship that willpersist throughout. Establishing an open and trusting working environment from the initial contacts between researcher and community representativesis of utmost importance.

In some cases communities will identify an issue that needs investiga-tion and seek outside expertise for researching it. Research conducted underpolitically charged and restricted time frames is faced with severe difficulties

from the outset. In these instances the situational immediacy outweighs thelocal interests in effective control and conduct of research. While this is how agreat deal of research is undertaken on the environment of northern regions,and in some cases on health issues, when the opportunity is presented to



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conduct research outside of a “process” more work can be put into develop-ing genuine participatory relationship.

In other cases, a research issue or project which has community levelimplications will first be conceptualized outside of the community. The re-

searchers then must establish a relationship with the community or com-munities involved. Normally this involves contacting the political bodiesrepresenting the communities to start a process of consultation. In somecases, multiple organizations may have a stake in the project and should becontacted.

Institutional consulta-tions should take place

in which local researchneeds, questions andissues are informallyidentified. The goals of these early consultationsare threefold 1) developface to face contacts be-tween researchers, com-

munity members andtheir representatives; 2)begin to identify areasof research synergy and;3) explore ways in whichthe research questions canbe framed so that they correspond with local interests. It is also prudent toexplore local community dynamics with respect to research in the past, at-

titudes toward to outside agencies, current issues of public concern and soon. Background knowledge about local issues allows researchers to interact constructively with people in the community and develop fruitful working relationships.

In summary, the initial contact phase starts a dialogue between the re-searchers and the political bodies representing the communities. The effortsof this phase of research are oriented to answering the question; should thisproject be explored in greater depth with the community at large? If there is anexpression of interest in the project as it is conceived at this early stage thenmore elaborate discussions can begin.

Framework or Community-Baseesearch

1. stablish contact, develop a working

elationshipa. evelop face-to-face contacts

between researchers, communitymembers and their representa-tives.

. Identify research areas of mu-tual interest.

c. Explore ways to

frame researchquestions formutual benet.



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2. EXPLORE THE OPERATION OF A RESEARCH RELATIONSHIP

he formation of a working group comprised of researchers and commu-nity representatives is an effective way to sharpen the research project defini-

tion and community–researcher relationships. It is important to balance the working group with people who carry the diversity of opinions within thecommunity. It should also include the community members most imme-diately affected by the project and/or the issue under examination. At this

stage the working group objectives are still exploratory;

what are the issues as de-fined by the local context

and by the research com-munity? What form willthe community’s partici-pation take? What kindof training is requiredfor the project? What kinds of training wouldthe community benefit

from? How will infor-mation be circulatedbetween the communityand the researchers and

vice versa? It is commonfor people within Aboriginal

communities and for researchers to fall into negotiation mode in this pro-cess. While there may be elements of negotiation in the working group en-counter, it is important to maintain a focus on generating new ideas andsharing perspectives.

In some instances communities will not conceptualize the problem inthe same way, will not recognize a problem, or reject the interpretation of the problem by the researcher. It may also be the case that there is no lo-cal expertise on the problem. What constitutes an acceptable level of com-munity participation varies according to the local investment in the project

outcome, availability of people and resources, research fatigue and a host of other factors. At its most basic level, community-based participatory research(CBPR) is the right for communities to be aware of research which takes placeon their lands and with their people, and to have a say in its organization.Community level participation is variable, and may consist largely of admin-

2. xplore the operation of a researchelationship.

a. Include as many different opin-ions as possible.

. Include members of the commu-nity most directly affected.

c. Brainstorm as many questions tobe answered as possible.

d. The only outcome which will applyto all communities is the right tobe aware of research affectingthem and a say in its organiza-tion.



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istrative and logistical work, or it may take the form of popular mobilizationaround the issue. While it is incumbent on researchers to establish working relationships which do not alienate people from the research taking place, it is also important to respect the right of people not to be involved.

3. DEVELOP A WORKING PROPOSAL FOR COMMUNITY

PARTICIPATION AROUND THE RESEARCH ISSUE

Once the working group has established some operational principles,these should be put to paper.

The Dene Cultural Instituterecommends that aResearch Agreement Model be drawn up bythe researchers and thecommunities involved(Masazumi and Quirk1993). This describesthe understandings of the researchers and the

community about thepurpose, methods, scope,training, distribution andcommunications strategyof the research along withguidelines for informed con-sent, confidentiality, and ex-ternal media use. Issues around data ownership and publication should also be

worked out at this point. Specific mechanisms for dealing with conflicting in-terpretations or inappropriate use of data should also have been establishedat this phase of the relationship and included in the written agreement.

At this point the community at large should be informed about the re-lationship. The information can take a variety of forms and the most appro-priate choices will likely be determined by the Aboriginal members of the

working group. Possibilities include the use of local radio, public informationmeetings, posters, and printed flyers. The public should be given an oppor-tunity to comment on the proposed project if they want to. The local admin-istrative and government organizations should be informed if they are not already. The local political representatives should be given adequate informa-tion to inform their constituents about the project and to debate its merits.

. evelop a working model for commu-nity participation around the researchissue.

The Dene Cultural Institute has de-veloped one of the many useful modelsfor this agreement. Once the writtenagreement is in place, the communityshould be informed of the research andhe content of the agreement. Every av-

enue should be used to ensure that thelarger community is informed and has a

chance to respond.. o the research.a. reate a Local Advisory Committee

(LAC) to oversee elements of theesearch.



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4. DO THE RESEARCH

Once the research protocol, methods and objectives have been agreedto and the community members have been informed the project enters the

operational phase. The challenge at this point is to maintain the dialoguebetween the community and the researchers. One of the most effective waysto maintain a constructive research relationship is to have a local advisorycommittee (LAC) to work with. The LAC can oversee implementation of the

research protocol agreement,identify the people who will

work with the research-ers and manage the in-

formation flow betweenthe community and theresearchers, providedthey are kept adequatelyinformed. Throughout the research progressreports should be madeavailable to the LAC and

the community.LACs should have

clearly defined mandatesand members shouldrepresent the diversity

within the population. Theirrole should include critical

review of all phases of the project and the ability to voice concerns raised within the community. Additional roles would be established as each proj-ect and community warrant. Guidelines should be established on how thecommittee’s decisions will be taken up by researchers. In most cases the LACs

will keep the projects locally relevant and allow for more effective commu-nication with the community at large. However, if problems do arise withthe community’s perception of the project the committee must have enoughpower to implement appropriate action. If not then they may be seen by oth-

ers in the community as co-opted by the researchers.5. INTERPRET AND COMMUNICATE THE RESEARCH RESULTS

he interpretation of research results from many pure science disciplines would seem at first glance to be a highly technical task not prone to com-

. Give the LAC clear responsibili-ties.

c. Provide them with progress re-

ports to share with the commu-nity.

d. Give the LAC sufcient author-ity to inuence the research inresponse to community concerns.

5. Interpret and communicate the re-search results.Allow the members of the community

to contribute their own interpretationsof the research to the nal results.



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munity involvement. However, in community-based participatory research(CBPR) there is attention to the context of scientific work, as discussed inthe first section of this paper, and it is often the different perspectives onthe context brought forward by the community that can influence inter-

pretation. Researchers should present the findings and their perspective of what they mean to the local advisory committee (LAC) or the communityas a whole. Very often alternative views of the implications will be brought up. Taking into account theimplications from the localperspective — and commu-nicating these outside

— can help advance thespecific goals of the com-munity. There are thustwo levels of communi-cation to be considered:relating the findings

within the communityand disseminating those

findings externally. A good CBPR design will beable to accommodate theperspectives of the peopleinvolved in the researchin the latter.

. R EPORT THE FINDINGS, WRAP UP THE PROJECT

As a project draws to its conclusion there are two elements to considerin disseminating the research findings. The first is to make sure that the re-sults are made known within the community and the second is the manage-ment of publications derived from the research. Reporting to the communityshould include executive summaries of reports, if not the final reports inentirety, translated into the local language. The reports should highlight find-ings in a form that local organizations can use to pursue their own goals.

Additionally the end of the CBPR project should be publicly indicated so that people will know the process is complete. Too often people are not madeaware that a project is completed and are given the impression that thingsare left hanging. The LAC and the researchers should meet a final time to de-cide if the initial objectives match the final results of the project, and if the

6. Report the ndings and wrap uphe project.

a. Where appropriate, either the fullreport or a summary of it should beranslated into the local language

for the information of the commu-nity members.

. Provide the community with resultshey can use.

c. Ensure that community mem-bers know when the research

is nished.d. rrange a last meeting between the

local advisory committee LAC and theesearchers to assess the process

and the results.



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requirements of the research agreement model used were met by the com-munity and the researchers.

Researchers are normally obliged in CBPR to provide draft copies of pub-lications and reports to the community for their comment. Communities

may require a review role in publications and other forms of research result dissemination. They may require the right to edit or veto publications de-rived from research. Academic researchers should at least be open to provid-

ing publication opportunitieso alternative interpretations

and dissenting opinions. If themechanisms for support-

ing the dissemination of divergent interpretationsare established early inthe research process anoutright veto may beavoided. In well con-ducted CBPR the peoplein the community are in-

volved in generating theresults and assisting theresearchers with interpre-tation. This is more likelyto result in mutually

agreed research conclusionsand their publication.

his should not mark the end of the relationship between the researchers

and the community. Some questions may be answered but inevitably newones are formulated. At this final point the researchers and the LAC shouldidentify what those questions are, how and if they can be addressed. If theresearch relationship has functioned well, providing tangible benefits to theeveryone, this is the time to build on that relationship and move forwardinto new realms of knowledge and understanding.

SUGGESTIONS FOR IMPLEMENTING CBPR

R ELATIONSHIPS WITH A BORIGINAL COMMUNITIES

he remainder of this report presents some practical suggestions for es-tablishing and conducting a community-based participatory research (CBPR)relationship with Aboriginal communities.

e. Provide the community with draftcopies of all documents derivedfrom the research and its resultsfor their comments. While the re-searchers’ conclusions have theirown validity, community membersshould be given an opportunity topublicly express dissenting views.

f. Maintain a relationship with thecommunity after the research is n-ished, bearing in mind that results

may raise as many new questions asanswers.



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ake the community the meeting ground for discussing theresearch

his is both a demonstration of the researcher’s genuine interest in work-ing closely with the community and a way to address issues of power be- ween researchers and the community. Universities and government of-ices can be intimidating places; meeting in the community gives people

access to whatever resources they may need locally.

Treat each communityand project as unique

No two communitiesare the same just as

no two research proj-ects are. A respect forhe uniqueness of

each community andresearch situationavoids the cookiecutter approach tocommunity relations

which are ultimatelycounterproductive.

Respect local politi-cal structures andprocesses

It is important that CBPR relationships build on the framework for decision making that exists

within the community. Research relationships may undermine local au-hority structures through a lack of awareness about how decisions are

made locally. In some places, consensus management is the normal oper-ating procedure. The process of consensus happens in informal social in-eractions which are not obvious to outsiders. Once achieved, consensus

may be formalized through familiar bureaucratic practices of meetings,motions and minutes. If researchers anticipate bureaucratic action theymay interpret its absence as evidence of “nothing happening.” The temp-ation to make something happen by trying to impose a specific kind of

action can interrupt an ongoing process of decision making.

Recognize informal authority within the communityIn some cases, Aboriginal communities have different and co-existing

Suggestions or Researc ers1. Make the community the meet-

ing ground for discussing research.

Remember that ofces can be in-imidating.2. Treat each community and project

as unique. An agreement that is sat-isfactory to one community may notsuit another.

3. Respect local political structures andprocesses. Many Aboriginal communi-ies achieve action through consen-

sus, which is not as visible to outsid-ers as the decisions of bureaucracy.

. Recognize informal authority withinhe community. It is as important to

have the support of Elders as the



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authority structures. Some are formal and bureaucratically organized,like band councils; others are informal and draw from local principlesof social organization for legitimacy. For example, respected Elders maybe consulted by the official leadership before decisions are finalized.

Researchers who are unaware of the informal authority structures maynot recognize their importance. In developing a research relationship it isoften productive to learn about the informal leadership, inviting these in-

dividuals into the communityoverview process. They can be

valuable contributors tothe research process and

help build relationships within the community.

Transparency of re-search objectives

It is critical to be com-pletely open about themotives for the research,the funding sources sup-

porting it, the people involved and so on. The ap-pearance of ulterior mo-tives in research can havea very damaging impact

on the relationship with thecommunity. Be prepared to

provide copies of grant proposals, correspondence with the granting agen-cies and letters of support to people who are involved in the project.

Work out a reasonable and locally relevant timetableIt is important to allow sufficient time for the community to digest theinformation flowing from the research throughout the duration of theproject. Time frames should allow for cultural and linguistic differenceshat may make communication slower than researchers would like or an-icipate. Academic and fiscal calendars are largely irrelevant in Aboriginal

communities: important seasonal and local events must be taken intoaccount, even when they are unexpected. If people feel coerced into at-ending meetings relations with the community will be strained. Allowhe community to establish the sequence and timing of events. Build in

enough flexibility to accommodate unexpected events.

support of ofcial community lead-ers.

5. Make your research objectivesclear. Even the appearance of ulte-rior motives can be damaging to theresearch relationship.

6. Work out a reasonable and locallyrelevant timetable. The timeframesof deadlines and schedules thatmany researchers are constrainedby have no relevance in Aboriginalcommunities. Attempts to force the

timing of meetings or interviewsmay be perceived as coercion.

7. Listen closely. If an idiomatic ex-pression is confusing, ask a memberof the community for clarication.



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Listen closelyPeople in Aboriginal communities keenly feel that their opinions havenot been sought, or have had little impact, in the decisions that haveaffected them in the past. In a community-based participatory research

CBPR) relationship it is very important to listen attentively to what is being said and how the information is communicated. Idiomatic expressions maybe clear to other people in the community but confusing to the research-ers. Most southern basedresearchers anticipatedirect expressionsof first person opin-

ions. If those are not orthcoming, or if hey are given nar-

ratives about thingsand times seeminglyunconnected to theissue at hand, it canbe difficult to inter-

pret what is going on.It is often fruitful toask for a cultural in-erpretation of these

kinds of discoursesso that their meaningsand implications for theresearch can be worked out.

Articulate research with local priorities and goals A common critique of research in the past was that it met the interestsof a select group of people and had little or no local relevance. CBPR isdesigned to provide materials and tools for people to address their owninformation needs as well as those of the researcher. Consultations withcommunity members should include an overview of issues that par-icular researchers may be able to address with the skills they possess.

Approaching community based research with flexibility in the researchdesign is helpful in articulating research interests.

Use culturally appropriate research toolsCommunities perceive researchers treating people as objects to bescrutinized rather than as human beings with feelings. Culturally

If responses seem unconnected tohe questions, ask if there is a cul-ural signicance you are missing.

8. ake research relevant to local pri-orities and goals. Flexibility in re-search design is helpful in clarifyingcommunity research interests.

9. Use culturally appropriate researchethods. People in communities

should not be treated as objects toe studied closely but as human be-

ing with feelings. Take the time to

gain an awareness of the culturalorms in communication. Discover,efore research begins, what top-

ics are considered sensitive and howpeople are accustomed to communi-



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inappropriate measures can also cause emotional harm to people.Researchers must develop methods that do not provoke new resent-ment or pain from earlier events. A sensitivity to local issues and cul-ural norms is critical. These issues should be explored early in the pro-

cess of building a research relationship with Aboriginal communities.In the case of questionnaires, it is important to recognize that in many

Aboriginal communities anonymity and the generalization of informationare foreign concepts. Peopledo not, for the most part,

live in isolation from thepeople around them, as

people in cities do, but indense multi-generational webs of interpersonalknowledge and signifi-cance. Questionnairesthat investigate sensitivetopics — and what con-stitutes a sensitive topic

can vary considerablybetween communitiesand peoples — may pro-

voke reactions despiteassurances of anonymity.

Communicative norms mayprohibit direct questions, cer-

ain topics may be considered offensive, or questions can access informa-

ion that doesn’t make sense in the milieu of a particular community.ake enough time to frame questions in an appropriate way and makehe need for the information clear to avoid problems.

Confidentialityhe ethical requirements surrounding confidentiality of data gatheredrom human subjects are critical in CBPR relationships. The small num-

bers of people living in many Aboriginal communities make it easier to

identify individuals than in larger populations. Masking identities inpublished material and reports should extend to photographs and otherrepresentations of life in the community. Many Aboriginal people andcommunities have found themselves, or people they know, in the pagesof magazines, text books and other materials without their knowledge.

cate and process information.10. Maintain condentiality. Many

Aboriginal communities have smallpopulations, making it more dif-

cult to hide the identity of re-spondents. Photographs should notbe published in any form withoutsigned permission from the appro-priate people.

11. esign a strategy for fully report-ing research results. A communityshould receive a report which re-

lates to their research needs, iswritten in the local language, reliesas little as possible on technicalterms, and is readily available tothe greatest number of people.



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50 imatziwin

Published photographs of artifacts, people and sacred places should allbe accompanied with signed permission to use forms. The local advisorycommittee will be able to indicate which photos require permissions and

who to get them from.

Design a comprehensive dissemination strategy A clearly defined and manageable strategy for reporting results shouldaccompany any community-based participatory research (CBPR) proj-ect. The minimum requirements are: the community’s research needs,he level of technical

competence people hold,returning the most

information to thelargest number of people, and avail-ability in the locallanguage. This is anintegral part of theresearch process andshould be funded ac-

cordingly. In additiono executive sum-

maries and reportsresearchers shouldconsider innovativeapproaches based on thekind of research and thecommunity’s interests. In some cases posters in public areas may be ap-propriate and community radio phone in shows are often productive.

Be realistic about the significance and impact of researchIt is important to keep the implications of the research in a realistic per-spective. Too often people’s hopes have been raised only to be dashedby reality. Communities have been the recipients of unwanted changebrought about by experts who have the power to act in the interests of outsiders.

Establish mechanisms to deal with misunderstandingsEven the best laid out CBPR project can produce misunderstandings orotherwise create difficulties within a community. Working with the localadvisory committee to establish a protocol for handling objections to theresearch is the most effective way to manage this issue.

12. Be realistic about the signicanceand the impact of the research.

Creating false or unrealistic hopesdestroys the trust of a community.13. Establish mechanisms to deal with

misunderstandings. This is one ofthe areas where the local advisorycommittee can be very helpful.

14. Provide opportunities for peopleto voice their concerns throughoutthe research process. If peopleare reluctant to approach the re-searcher directly, members of thelocal advisory committee can act asintermediaries.

15. Approach the relationship withcommunity participation as a com-



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Give people an avenue to voice concerns throughout theresearch process

Communication should always be two-way in CBPR. A good approach iso make use of the communication systems already in place. Asking the

local advisory board to be a conduit for people in the research process isa good approach.

Approach the relationship with the community participationas a commitment

A CBPR relationship makesparticipation the focal point,

rather than a minor ele-

ment, of the research pro-cess. Appropriate resourc-es need to be allocatedin the project design tomaintain a CBPR rela-tionship and hire people

who have the skills toimplement it.

ork at communi-cating informationin locally relevant terms

Look for local idi-oms and metaphors that pro-

vide grounded examples of

he information collected through the research. Approach the commu-nication of research at all phases as an opportunity to do public educa-ion. Take advantage of local information sources; go on the community

radio, write information pieces for the local newsletter, paper or otherpublications. Always have a translator available to help with these efforts.Research results which come in a cultural and linguistic form familiar tohe communities will be appreciated and useful to them.

Don’t folklorize local understanding and discourses

he way people live in Aboriginal communities does not form a packageof readily consumable beliefs and traditions. The way that all people liveand make sense of the world is deeply ingrained and highly personal.reat those ways with respect and develop a genuine interest in people’s

lives.

mitment. There is a difference be-ween “taking local concerns into

consideration” and ensuring thatlocal concerns are woven into thefabric of the research.

16. ork at communicating informa-ion in locally relevant terms. At

each stage of the research pro-cess, it is important to share theinformation being collected in cul-urally and linguistically appropri-

ate ways.17. on’t make folklore out of lo-

cal understandings and ideas. Agenuine interest in the lives of thecommunity will help create properespect for their culture.



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Leave something behind in the communityHistorically, Aboriginal communities have provided a great deal of infor-mation to researchers and received very little in return. The researcher, onhe other hand, benefits from the research through career advancement,

salary and so on. Research projects should contain elements of benefit tohe community or the individuals involved. Training research assistants or

other community members in specific skills can provide a lasting benefit of the project. Similarly,researchers can offerheir skills as consultantso the community in

gratitude for theirparticipation.

Document theresearch process

Building a researchrelationship and un-dertaking a project is a learning experi-

ence for everyoneinvolved. While eachproject is unique, thelessons learned in theprocess are valuableo the community ando other researchers. A

report or other documentation of the life of the CBPR relationship can beuseful to everyone concerned and for others down the line.

Recognize local contributionsResearchers get recognition in print for their work but the people inhe Aboriginal communities who provide the information, and allowhe work to take place, do not. This is another concern that should be

addressed in the early phases of a research relationship. Balancing con-identiality with acknowledgment can be complex. If confidentiality

granted to participants precludes naming the main contributors, blanket acknowledgment of the role of participants should be made clear. In situ-ations where specific individuals have acted as co-investigators withinhe community they should be included as named authors in reports and

publications if they are interested in this kind of recognition.

18. Leave something behind in thecommunity. Offer your services asa consultant, create training pro-grams as part of your research,ensure that the community benetsfrom the process and results of theresearch as much as you will.

19. Document the research process.eeping a record of decisions made

and challenges met will help thenext research project the commu-nity undertakes, as well as your next

project.20. Recognize local contributions. Any

publications which results from theresearch should, in whatever way isappropriate to the circumstances,



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Report regularly to the communityhe typical research cycle has a large time gap between data collection

and the dissemination of results. If little feedback is made to the commu-nity during the analysis period people wonder what has happened to the

researchers and what is going on with the project. It is as important tomaintain regular contact with the community once data have been col-lected as it is in the intensity of interaction with the community during

he collection phase.

upport local controlover the research

Be prepared to have

he local band council,hamlet office, communi- y council or nation officehandle the local part of he budget. The extensionof control over researchby Aboriginal communi-ties covers activities with-

in the communities andtheir lands. Communitycontrol over the bud-get also demonstratesto participants that the

research is supported by thelocal political structure.

Provide appropriate compensation to participants andcollaboratorspecialized information held by a group of people is accumulatedhrough generations of observation. Consequently, Elders and other

local experts should be treated as consultants and rewarded appropri-ately. These costs should be built into the project design. Normally thelocal organizations supporting the research project will help identifyparticipants and set fee scales. They will also often be responsible for

reimbursement for participants from the project funds. A word of cau-ion: payment for information can introduce an element of coercion

into people’s decisions to participate in a research project. An analogoussituation in the past saw the sale of sacred objects to museum collectorsby people on the brink of survival. In normal times those items would

acknowledge the contributions madeby the community.

21. Report regularly to the community.Once the data are being analyzed,eep the community informed ofhe possible results and implica-ions.

22. Support local control over theresearch. It may be appropriateo make the local community of-

cials responsible for dispersal andaccounting of the local portion of

he research budget. Local controlover some part of the researchprocess shows local political sup-port of the project. This is reas-suring to community members.



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never have been given up and their absence caused harm to the groupsin question.

Observe intellectual property rightsResearch projects that deal with a cultural body of knowledge shouldrecognize that knowledge is not evenly distributed within a community.hey should also establish mechanisms to maintain the privileged nature

of the knowledge where appropriate. Internationally, the knowledge is-sue has provoked con-siderable debate about intellectual propertyrights and the abil-

ity of Indigenouspeoples to maintaincontrol over infor-mation, samples, andother data once theyhave been collected.

Establish how data will be controlled

and managedhere are increasing

efforts in Aboriginalcommunities to ex-ert control and owner-ship over data collectedon their lands and with

heir people. The issue of data ownership is a very complex issue for re-searchers who are often bound by academic conventions to make datapublicly available. It is in everyone’s interest to establish a clear protocolor data management before research has begun. Storage, distribution

and confidentiality protocols should all be established before data collec-ion begins.

Respect the social dynamics of the communityCommunities may have internal divisions that make it difficult for some

people to work together. Specific kin relations may prohibit some formsof interaction. These issues should be worked out before the research be-gins.

23. Provide appropriate compensationo participants and collaborators.

Elders and local experts shouldbe compensated as consultants. Beaware of the danger of paymentfor information becoming a form ofcoercion.

24. Observe intellectual propertyrights. Not everyone within a com-munity shares the same knowledge.

25. Establish in advance how datawill be controlled and managed.



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CONCLUSION

Research in Aboriginal communities in a community-based participa-tory research (CBPR) framework requires that specific attention be paid to

the historical developments that led to the situation people in those com-munities find themselves in today. People who conduct research in areasthat touch on the lands and lives of Aboriginal peoples should be prepared

o approach their work as asmall piece of a much largereffort at community develop-

ment and renewal. CBPR is one tool that can aid in

hat effort. By engaging people in the communi-ies as participants in theresearch who have rightsand obligations the dif-ficulties of the past rela-tionship with researcherscan be largely avoided.CBPR is not a system

which, if properly imple-mented, produces thedesired results. It is an

applied philosophy that re-quires judicious use of com-

mon sense and situational flexibility on the part of everyone concerned. This

paper provided an overview of the context of the development of CBPR, anoutline of a framework for establishing a CBPR relationship with Aboriginalcommunities, and a series of practical suggestions for researchers who areinterested in working on a CBPR project.

R EFERENCES

No Author1999 Tipatshimun. March 1999, 2(2). Innu Nation.

Association of Canadian Universities for Northern Studies.1988 Ethical Principles for the Conduct of Research in the North. Ottawa: Association

of Canadian Universities for Northern Studies.

Published research results shoulde approved by the communityefore publication.

26. Respect the social dynamics ofhe community. It may be neces-

sary to hold more group sessionshan planned, or impossible to

hold any, depending on the cul-ural norms of the community.



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56 imatziwin

Berger, T.R.1977 Northern Frontier, Northern Homeland: Report of the Mackenzie Valley Pipeline

Inquiry. Ottawa: Minister of Supply and Services Canada.

Brant Castellano, Marlene1993 “Aboriginal Organizations in Canada: Integrating Participatory Research.” In

Peter Park, Mary Brydon-Miller, Budd Hall and Ted Jackson, eds., Voices of Change pp. 145-55. Toronto: OISE Press.

Dene Cultural Institute1991 “Guidelines for the Conduct of Participatory Community Research to

Document Traditional Ecological Knowledge (TEK) for the purpose of Environmental Assessment and Environmental Management,” Paper submit-

ted to the Canadian Environmental Assessment Research Council1994 “Guidelines for the Conduct of Participatory Community Research.” InBarry Sadler and Peter Boothroyd, eds., Traditional Ecological Knowledge andEnvironmental Assessment pp. 69-74. Manuscript.

Escobar, Arturo1995. Encountering Development: The Making and Unmaking of the Third World.

Princeton, N.J.: Princeton University Press.

Flaherty, Martha. President Inuit Women’s Association

1995 Address to the International Workshop on Ethical Issues in Health Research Among Circumpolar Indigenous Populations Inuvik, NWT.

Gamble, Don J.1978 “The Berger Inquiry: An impact assessment process.” cience 199(3): 946-952.

Hall, Bud L.1981 “Participatory Research, Popular Knowledge and power: A Personal Reflection.”

Convergence XIV (3): 6-19. .

Hoare, Tony, Chris Levy and Michael P. Robinson1993 “Participatory Action Research in Native Communities: Cultural Opportunities

nd Legal Implications.” The Canadian Journal of Native Studies XIII (1): 43-68.

Inuit Tapirisat of Canada1994 “Negotiating Research Relationships in the North.” Background Paper for a

Workshop on Guidelines for Responsible Research.” Yellowknife, NWT.

ohnson, Martha

1992. Lore: Capturing Traditional Environmental Knowledge. Ottawa: Dene CulturalInstitute and IDRC.

Masazumi, Barney and Susan Quirk1993 A Participatory Research Process for Dene/Métis Communities. Dene Tracking,

manuscript.



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Oakes, Jill and Rick Riewe1996 “Communicating Inuit Perspectives on Research.” In Jill Oakes and Rick

Riewe, eds., Issues in the North, pp. 71-79. Edmonton: Canadian CircumpolarInstitute.

O’Neil, John D., Jeffrey R. Reading and Audrey Leader1998 “Changing the Relations of Surveillance: The Development of a Discourse of

Resistance in Aboriginal Epidemiology.” uman Organization 57(2): 230-7.

Ryan, Joan and Michael P. Robinson1990 “Implementing Participatory Action Research in the Canadian North: A Case

Study of the Gwich’in Language and Cultural Project.” Culture X (2): 57-71.

1992 “Participatory Action Research: An Examination of Two Northern Case

Studies.” Arctic Institute of North America.

A DDITIONAL R ESOURCES

Community-based participatory research with balanced community–re-searcher partnerships should benefit Aboriginal communities. The policy im-plications which need to be pursued include lobbying for research funding to support this way of research, i.e., a longer time period for call for propos-

als because establishing the partnership and refining the research questionrequires more time; a longer period of funding to allow for undertaking theresearch project. Journals should consider accepting joint reporting of resultsand ways of including different interpretations of results, including possibledissension at the time of publication. Universities should appreciate that thisresearch may take longer due to the partnership negotiations, that a largerteam will lead to multi-authored papers and slower rates of publication,

which in turn may impact on junior faculty having difficulties in academic

advancement.he following are some references that indicate recent developments in

CBPR. Please note these are references predominantly for Canada. There isalso very significant movement in Australia and New Zealand with detailedguidelines for CBPR which are all web-based.

GUIDELINES FROM ORGANIZATIONS AVAILABLE ON THE INTERNET

Association of Canadian Universities for Northern Studies

1998 Ethical Principles for the Conduct of Research in the North. Ottawa: Associationof Canadian Universities for Northern Studies. [This is an updated version of the reference quoted by the author]http://www.cyberus.ca/~acuns/EN/n_res_02.html#dd



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58 imatziwin

Tri-Council1998 “Research involving Aboriginal Peoples.” Section 6 in Tri-Council Policy

Statement. Ethical Conduct for Research Involving Humans. Ottawa: MedicalResearch Council of Canada, Natural Sciences and Engineering Council of

Canada, Social Sciences and Humans Research Council of Canada.http://www.nserc.ca/programs/ethics/english/sec06.htm

Royal Commission on Aboriginal Peoples1993 “Ethical Guidelines for Research.” Appendix B in Integrated Research Plan.

Ottawa: Queen’s Printer.http://www.ainc-inac.gc.ca/ch/rcap/index_e.html

Burgess, Michael, Fern Brunger, with Asch and Macdonald

2001 “Section D-1. Negotiating Collective Acceptability of Health Research.” Ottawa:Law Commission of Canada.http://www.lcc.gc.ca/en/themes/gr/hrish/macdonald/sectiond.asp

Macaulay AC, L.E. Commanda, W.I. Freeman, N. Gibson, M.I. McCabe, C.M. Robbins,P.I. Twohig.

1998 “Responsible Research with Communities: Participatory Research in PrimaryCare.” For the North American Primary Care Research Group — includes threeIndigenous authors Communities.

http://www.napcrg.org National Aboriginal Health Organisation (NAHO) promotes Ownership, Control,

Access and Possession (OCAP)http://www.naho.ca

Council for International Organizations of Medical Sciences1991 International Guidelines for Ethical Review of Epidemiological Studies. Geneva,

Switzerland.http://www.cdc.gov/od/ads/intlgui3.htm

American Indian Law Center1994 Model Tribal Research Code with materials for Tribal regulation for research

nd checklist for Indian Health Boards. Albuquerque, USA.http://www.ihs.gov/nonmedicalprograms/research/pdf_files/mdl-code.pdf

INDIGENOUS ORGANIZATIONS

Nunavut Research Institute and Inuit Tapirisat of Canada

1998 Negotiating Research Relationships: A Guide for Communities. Ottawa: Inuit Tapirisat of Canada, (Written in Inuktitut and English; see page 1 of this vol-ume for the English version.)



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O THER GUIDELINES

Green LW, M.A. George, M. Daniel, C.J. Frankish, C.J. Herbert, W.R. Bowie, et al.

1994 Study of Participatory Research in Health Promotion. Ottawa: Royal Society of

Canada, (Includes very useful evaluation tool to document level of communityparticipation). This document is also available in community friendly format,nd includes same evaluation tool.

R ECENT BOOKS

Winkler, Meredith and Nina Wallerstein, eds.2002 Community Based Participatory Research for Health. New York: Wiley.

O THER R EFERENCES

Battiste, Marie and James [Sa’ke’j] Youngblood Henderson2000 Protecting Indigenous Knowledge and Heritage. A Global Challenge. Purich’s

Aboriginal Issues Series. Saskatoon: Purich Publishing,

Gibson N, G. Gibson, A.C. Macaulay2001 “Community-based research: Negotiating agendas and evaluating outcomes.”

In Morse J, J. Swanson and A.J. Kuzel, eds. The Nature of Qualitative Evidence. Thousand Oaks: Sage.

Herbert CP. Community-based research as a tool for empowerment: the Haida Gwaiidiabetes project example. Can J Pub Health 1996; 87: 109-112.

Kateri Memorial Hospital Center1997 Code of Research Ethics. Kahnawake Territory: Kahnawake Schools Diabetes

Prevention Project. (write to Kahnawake Schools Diabetes Prevention Project,Box 989, Kahnawake, PQ J0L 1B0).

Kaufert, Joseph, Laura Commanda, Brenda Elias, Rhoda Grey, T. Kue Young, andBarney Masuzumi1999 “Evolving Participation of Aboriginal Communities in Health Research

Ethics Review: The Impact of the Inuvik Workshop.” International Journal of Circumpolar Health 8(2): 134-245.

Macaulay AC, N. Gibson, W. Freeman, L. Commanda, M. McCabe, C. Robbins, P. Twohig

1999 “For the North American Primary Care Research Group. Participatory Research

Maximises Community and Lay Involvement.” British Medical Journal 319: 774-8 (includes three Indigenous authors).



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Macaulay AC, T. Delormier, A.M. McComber, E.J. Cross, L.P. Potvin, G. Paradis, R.I.Kirby, C. Saad-Haddad, and S. Desrosiers

1998 “Participatory Research with Native Community of Kahnawake Creates

Innovative Code of Research Ethics.” anadian Journal of Public Health 89(2):105-108.

O’Neil, John, Joseph M. Kaufert, Leyland Kaufert, Patricia and William W. Koolage“Political Considerations in Health-Related Participatory Research in NorthernCanada.” In Noel Dyck and James B. Waldram, eds., Anthropology, Public Policy,and Native Peoples in Canada, pp. 215-232. Montreal and Kingston: McGill-Queen’s University Press.

O’Neill, Patrick1998 “Communities, Collectivities, and the Ethics of Research.” anadian Journal of

Community Mental Health 17(2): 67-78.

Scott, Kim and Olivier Receveur1995 “Ethics for working with communities of Indigenous Peoples.” anadian

Journal of Physiology and Pharmacology 73: 751-753

Smith LT.1999 Decolonizing Methodologies: Research and Indigenous Peoples London: Zed Books

Ltd.

Wax ML.“The ethics of research in American Indian communities.” American IndianQuarterly XV: 431-455.

Weijer Charles, Goldsand Gary, Ezekiel J. Emanuel1999 “Protecting communities in research: current guidelines and limits of extrapo-

lation.” Nature Genetics 23: 275-280.

Weijer C.1999 “Protecting communities in research: Philosophical and pragmatic challenges..”

Cambridge Quarterly of Healthcare Ethics 8: 501-513.



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A COMMUNITY COMMENT

What I liked about this was all the writing in the inserts. Then you know

what is being said instead of the words in the main part. I think the insertsgive the framework of what these people were doing. When I am saying thisI want you to think about that man who was picked up on 163 street andhe was Native. They thought he was drunk and they put him in detox for 10hours and instead he had had a stroke. What I got out of this article is the

way that white people are willing to change for Natives, Eskimos, Métis, tomake things better for them. We forget that people are all human.

I read the main text as well as the inserts. The inserts helped with under-

standing the main text. I felt the inserts showed that researchers are on theright road for a change, the road to better understanding. Wording wasn’t a problem. When people are coming to interview Native people, the thing of the thinking is that we’re so stupid that we don’t know anything because

we’re not talking, it’s not our way to talk.he basic framework set-up was a good idea and helpful. It helps com-

munities to understand what they can do to be more effective in cooperating with research. A Local Advisory Committee is a great idea to start the processof trust. We’re all learning and to make it better we have to create new waysof doing things. The emphasis on community was wonderful. This is an ar-ticle that takes an important first step toward better understanding. I read it right through and wanted more. People need to understand each other.

I thought about some of the books I had to read about breast cancer andNative writers who wrote and tried to understand how cancer was affect-ing their family. We have to start with the family. The Native writers made

it easier for me to understand. I tried to put myself in their shoes. I felt they were understanding. They weren’t talking too much about things that wedon’t talk about, like community secrets. They talked about ways of coping that I know and could understand.



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