First Nations Cancer Control inCanada Baseline Report

This document has been made possible with a financialcontribution from Health Canada, through the CanadianPartnership Against Cancer. The views expressed hereinrepresent the views of the Canadian Partnership AgainstCancer.

The majority of the information within our series ofbaseline reports for First Nations, Inuit and MétisCancer Control, respectively, are sourced from theenvironmental scans completed in 2012. Theenvironmental scans can be found on cancerview.ca.The environmental scans provided a rich source ofinformation, including detailed descriptions of cancercare pathways experienced by First Nations, Inuit andMétis peoples in Canada and examples of leadingpractices to advance cancer control for and with FirstNations, Inuit and Métis peoples. The purpose of thisbaseline report is to provide an overview of the state ofcancer control for First Nations, as of June 2012.

The Partnership gratefully acknowledges the NationalAboriginal Organizations Caucus with the CanadianPartnership Against Cancer and the First Nations, Inuitand Métis Advisory Committee on Cancer Control fortheir guidance.

The contents of this publication may be reproduced inwhole or in part, provided the intended use is for non-commercial purposes and full acknowledgement isgiven to the Canadian Partnership Against Cancer.

Suggested Citation: Canadian Partnership AgainstCancer (2013). First Nations Cancer Control in CanadaBaseline Report. Toronto: Canadian Partnership AgainstCancer.

Photo Credits: Ben Powless

Acknowledgements

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Acknowledgements.............................................................................................2

1. Introduction – Cancer and First Peoples...........................................................51.1 Information Sources for this Report...........................................................................................61.2 Data Considerations ..................................................................................................................6

2. Cancer Control and First Nations – a National Picture ......................................72.1 Who Are First Nations?..............................................................................................................7

How Many First Nations Persons Are There in Canada?Where Do First Nations Live?How Are First Nations Represented?

2.2 First Nations Health Care ...........................................................................................................82.3 Chronic Disease and Cancer.......................................................................................................9

Chronic Disease Risk Factors for First NationsCurrent Cancer Patterns

2.4 First Nations Cancer Care.........................................................................................................10Cancer Pathways

3. Barriers to Health Service Delivery.................................................................123.1 Access to Care in Rural and Remote Communities ...................................................................12

Geographic DistanceHealth Human Resources

3.2 Coordination of Care ...............................................................................................................16Provincial Cancer AgenciesHospitalsLevels of Government

3.3 Patient Identification...............................................................................................................21Ownership, Control, Access and PossessionNeed for InformationData SourcesHealth Care Providers

3.4 Community Awareness and Cancer Education .........................................................................25Views of CancerPrevention through EducationAcross the Continuum of Care

Table of Contents

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4 Patient Experience..........................................................................................304.1 Beginning the Cancer Journey: Screening and Diagnosis ..........................................................30

Early DetectionScreening ChallengesDiagnosing Cancer

4.2 Living with Cancer: Treatment .................................................................................................39Treatment InformationTraditional Healing and Culturally Appropriate CareNavigating the System

4.3 Home and Community Care.....................................................................................................44Leaving the Care FacilityPalliative Care

4.4 Surviving Cancer......................................................................................................................48Supporting SurvivorsCase ManagementLife After Cancer

5.0 Conclusion ...................................................................................................525.1 Epilogue ..................................................................................................................................52

Saint Elizabeth @Yourside Colleague® Cancer Care CourseAboriginal Nurses Association of CanadaHealth Empowerment for You! (HEY!)Cancer Care Ontario’s Aboriginal Cancer Strategy IIManitoba’s Cancer Strategy 2012-2017Alberta’s Cancer Plan To 2030

Table of Contents

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1. Introduction – Cancer andFirst PeoplesWhile cancer affects everyone, its distribution, impact andoutcomes are not shared equally. Rates of common cancershave increased among First Nations, Inuit and Métis peoplein the past few decades and in some populations, are nowat or above the incidence rates in the general Canadianpopulation. Broader determinants of health, includingfactors such as culture, geography and access to basichealth services, contribute to the unique cancer burdenfaced by First Peoples1. A few generations ago, cancer wasrelatively unknown (in part because life spans wereshortened by infectious diseases and injuries), but now it isamong the top three causes of death2.

Advancing cancer control with and for First Peoples is apriority of the Canadian Partnership Against Cancer (thePartnership). In 2011, the First Nations, Inuit and Métis

Action Plan on Cancer Control was released, representing acollaborative effort by many organizations and individuals.Cancer control stakeholders including First Peoples haveworked to identify the issues and barriers impacting cancercare delivery to each of the three First Peoples and thefindings indicate that many communities are ready, willingand able to undertake the collaborative work required toaddress and improve the cancer pathways. A number ofinnovative programs across Canada are already beginning toaddress these and other issues, and many have hadsignificant regional success. However with limitedcommunication and sharing of expertise across differentjurisdictions, many regional success stories go unheard.

The purpose of this baseline report is to provide anoverview of the state of cancer control for First Nations, asof June 2012. As such, it provides a baseline against whichprogress can be measured over the coming years.Information and developments that emerged after June2012 are included in the Epilogue of this report. This is one

Cancer and First Peoples

of three specific reports that will address the distinct cancerpathways specific to First Nations, Inuit and Métispopulations. This report will provide a descriptive context ofthe cancer pathway for First Nations and identify existingchallenges, as well as successful leading promisingpractices, across the cancer control continuum.

1.1 Information Sources for this Report

Effective cancer control in any population requires anunderstanding of the current cancer burden within theircommunities.3 There is a need for further information tobetter understand the unique cancer journey faced by eachof the First Peoples and to identify the gaps and barriers incancer care as a priority for addressing cancer and itsrelated health challenges. To address the need forinformation, the Partnership issued requests for proposalsto conduct environmental scans to help gather thisinformation. Contractors were engaged to identify leadingand promising practices and models across the cancercontrol continuum, as well as attitudes, values andbehaviours regarding cancer and chronic disease. Finally, anenvironmental scan was conducted on existing systems ofpatient ethnocultural identification which offers examplesof leading practices for gathering health information inculturally appropriate ways.

The information collected from these scans has contributedto the assessment of the current state of cancer control andthe identification of leading cancer control practices andmodels of care in First Nations populations. This report willdraw on the data and analyses from these scans, as well asother resources including, but not limited to, publicationsfrom the Assembly of First Nations, the Health Council ofCanada, provincial cancer agencies, the First Nations andInuit Health Branch of Health Canada, the First NationsRegional Health Surveys, and independent publishedresearch. Compiled, this report showcases leading cancercontrol practices and models of care in First Nationscommunities.

1.2 Data Considerations

Every effort has been made to make this baseline report ascomprehensive as possible. There has been considerableprogress on health data specific to First Nations, Inuit andMétis peoples. However, data remains far short of thestandard of data available for other Canadians. There are anumber of gaps and challenges that limit the findingspresented in this baseline report including:

The majority of the existing sources for cancer•information contain gaps. In many cases, ethnicityis not recorded in data sources, which means thatinformation specific to First Peoples is lacking. First Nations, Inuit and or Métis identification is•also a challenge, as different jurisdictions usedifferent definitions and criteria. National surveys which do not target Aboriginal•people specifically do not have a sufficient samplesize to be able to determine health trends,including cancer patterns. National surveys such as the Canadian Community•Health Survey exclude segments of the population,including First Nations living on reserves, or do notcontain mechanisms to distinguish between FirstPeoples.Regional surveys such as the First Nations Regional•Health Survey and data initiatives have attemptedto fill in these gaps, however the collectedinformation is not always comparable across thecountry.

Due to these data limitations, understanding the burdenand impact of cancer for First Nations is a complicated task.Without information on First Nations cancer statistics, itbecomes difficult to determine patterns of cancer, monitortrends over time, and effectively develop initiatives toimprove cancer outcomes. It is important to recognize thatin many cases, due to these existing information gaps, thisreport must draw on older data that may not be national inscope. In some situations, available data is more than adecade-old, which makes it difficult to understand andanalyse current cancer realities for First Nations.

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2. Cancer Control and FirstNations – a National Picture

2.1 Who Are First Nations?

First Nations are one of the three constitutionallyrecognized Aboriginal groups in Canada. They represent 52nations and more than 60 languages. First Nations culturesvary from east to west and from north to south and eachregion has its own distinct practices, identity, and culturalprotocols. The majority of First Nations adults highly valueparticipation in traditional cultural activities and considertraditional spirituality an important aspect of their life.4

More than one in five First Nations adults (18 years and up)speak or understand at least one First Nations language andapproximately 18 per cent use a First Nations languagemost often in daily life.5

How Many First Nations Persons Are There inCanada?

In 2011, 851,560 people identified as a First Nations person,representing 60.8 per cent of the total Aboriginalpopulation and 2.6 per cent of the total Canadianpopulation.6 Of this number, 53 percent of whom wereregistered - that is, registered as Indian under The IndianAct.7

Where Do First Nations Live?

Although the absolute number of First Nations living on oroff reserve is not clear, the Indian Registry of Status Indiansreports that 56 per cent of status First Nations people liveon reserve and 44 per cent live elsewhere.8 As of 2011, theAssembly of First Nations recognized 633 First Nationsreserve communities in regions across Canada; however

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A National Picture

this number is constantly changing, as new communitiesare established. First Nations that live off reserve havemigrated to towns and cities across Canada, with just over24 percent living in rural areas.9

Variations in the geographical distribution and size of FirstNations communities have a direct influence on the healthcare delivery systems for First Nations that have developedin each province and territory.

Figure 1: Map of First Nations in Canada

Source: Aboriginal Affairs and Northern Development Canada

The unique diversity of First Nations in Canada must beborne in mind when considering health challenges.

How Are First Nations Represented?

At the national level, the Assembly of First Nationsrepresents the interests of 633 First Nations (and also FirstNations persons living off reserve). The Congress ofAboriginal Peoples also represents First Nations living offreserve.

Regionally, First Nations are represented by their respectivePolitical Territorial Organization (PTO). At the community(reserve) level, the Band is represented by an elected Chiefand Council.

2.2 First Nations Health Care

Primary care and public health programs for on-reserveFirst Nations receive funding from Health Canada’s FirstNations and Inuit Health Branch (FNIHB). FNIHB operates223 health centres in semi-isolated First Nations

communities and nursingstations in 74 remote andsemi-remote sites.Secondary and tertiarylevels of care come fromprovincial or territorialfacilities that are typicallylocated outside FirstNations communities. ForFirst Nations living off-reserve, provincial orterritorial health caresystems are usuallyresponsible for providingboth primary andspecialized care.

Increasingly, First Nationsare taking greater controlover health care servicesin their communities. Inmany cases, First Nationsgovernments and

organizations play a direct role in the delivery of localizedprimary care. Various types of agreements have beennegotiated among federal, provincial/territorial and FirstNations governments and organizations, enabling FirstNations communities to assume responsibility in healthservice delivery.

The federal government’s Non-Insured Health Benefitsprogram (NIHB) covers certain medical costs, includingprescription drugs and medical supplies, and also assistswith the payment of transportation to the nearestappropriate health professional or facility for all status FirstNations to access certain medically necessary health

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services that cannot be obtained on the reserve or in thecommunity of residence. The NIHB program is definedregionally and is meant to fill gaps in services not insured bythe province or territory.10 For First Nations living off-reserve, NIHB does not assist with travel costs if the serviceis available locally, and if travel benefits are theresponsibility of another party.11 Non-status First Nationsare not covered by the NIHB program and must seekprovincial/territorial insurance or private insurance.

Qualitative feedback suggests that, despite its ability toease the financial burden of medical transportation, accessto NIHB can be difficult. Attaining coverage through theNIHB program has been described as a complicated processand some have said that this administrative burdenbecomes a deterrent for pursuing coverage. In remoteareas, where travel is most likely required for First Nationsindividuals in need of health care services, more adultsreported difficulties in accessing NIHB to cover theirtransportation services or costs.12

2.3 Chronic Disease and Cancer

In recent years, First Nations adults on average were lesslikely to report their health as thriving than were adults inthe general Canadian population.13 This emerging patternreflects the unique health challenges faced by many FirstNations. Over the past several decades many factors,including income, employment, culture, and access tohealth care, have contributed to the emergence of certainchronic diseases as threats to the well-being of FirstNations.14

Although national data are not available, regional studiesshow that cancer incidence has risen dramatically in FirstNations populations over the past few decades, and thatcancer rates among First Nations are increasing faster thanoverall Canadian cancer rates.15 Evidence of disparities incancer experiences and outcomes for First Nations indicatesthat this diverse population is faced with a unique cancerburden.

Addressing the current state of cancer, as well as otherhealth concerns, requires an understanding of the uniquecontext of health for First Nations individuals and thefactors that influence their well-being.

Chronic Disease Risk Factors for First Nations

Chronic diseases, including cancer, result from bothmodifiable and non-modifiable risk factors. The majorforces driving the prevalence of risk factors for First Nationsinclude social, economic, political and environmentalfactors known as determinants of health.16 Thesedeterminants combine and work in complicated ways anddo not affect every person in the same way.

In many cases, negative determinants of health are moreprevalent for First Nations people across Canada.17 Income,education, living conditions, and First Nations specificdeterminants such as colonization, dispossession of land,and loss of traditional practices contribute to a poorerhealth status18 and earlier mortality.19 For example,unemployment rates for First Nations living off reservewere reported by the 2006 census to be twice as high as forthe general population, and nearly four times higher forFirst Nations living on reserve.20

In turn, these determinants influence most modifiable riskfactors for chronic disease, including diet, physical activityand tobacco use.21 At the individual level, there exists ahigher prevalence of most major lifestyle risk factors forchronic disease amongst First Nations.22 For example,studies indicate that the rate of smoking among FirstNations is two to three times higher than that for thegeneral Canadian population and that First Nations aremore likely to be overweight or obese than members of thegeneral population.23, 24 High rates of other risk factors,including physical inactivity, unbalanced diets, and alcoholconsumption, are a health concern for most First Nations.These and other modifiable risk factors are now recognizedas causing half of all cancers.25

The risks associated with chronic disease developmentincrease with age, due to the accumulation of risks acrossthe life stages,26 as shown in the figure below. Recentstudies indicate that First Nations are living longer, as thegap in life expectancy between First Nations and thegeneral Canadian population has been almost halved overthe past 20 years.27 In 2011, almost half (48.8 per cent) ofFirst Nations were less than 25 years of age.28In the comingyears, health risks associated with increased age willbecome increasingly relevant for this expanding group of

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people. Cancer is of particular concern because age is oneof the largest contributors to cancer risk.29 The relative riskfor a cancer diagnosis rises sharply for a person over 50years old.

Figure 2: Contributors to Chronic Diseases Among FirstNations, Inuit and Métis

In response to evidence from health surveys from FirstNations, many of these factors are now being addressedthrough initiatives to reduce the use of commercial tobaccoand to encourage healthy eating and active living. FirstNations healthy living strategies assist individuals inadopting and maintaining healthy lifestyles that reflect thelocal realities of their communities.

Current Cancer Patterns

Among registered First Nations, cancer is the third mostcommon cause of death in men (18 per cent of deaths) andthe second most common cause in women (25 per cent ofdeaths).30 First Nations women, but not First Nations men,have been shown to die from cancer at a higher rate thando non-Aboriginal Canadians of the same age. Theincreased rate of cancer mortality among First Nationswomen is due to higher mortality rates from cancers of thecolorectum, uterus/ovaries and other sites.31

Cancer patterns have shifted over the past decades towardsincreasing rates of new cancers related to Westernlifestyles, such as cancers of the lung, breast, colorectumand prostate. Data from Ontario show that the incidence of

cancer among First Nations people is growing faster thanthat of the general Canadian population.32 Common cancerssuch as cervical, breast, prostate, lung and colorectal haveincreased remarkably in recent years in many First Nationscommunities. Lung cancer is the most common type ofcancer for all Aboriginal peoples, followed by prostate andcolorectal cancer for men and breast and colorectal cancerfor women.33 In many regions, colorectal cancer is ofparticular concern since its incidence in First Nations hasreached levels similar to the non-First Nations population.34

Early detection of cancer greatly increases the chances forsuccessful treatment, yet First Nations tend to present withlater-stage cancers and have higher mortality rates frompreventable cancers.35,36 In Ontario, for example, a recentstudy found that 66 percent of First Nations women whowere diagnosed with breast cancer were diagnosed at alater stage than non-Aboriginal Ontarians.37 These findingssuggest problems of access to cancer programs andservices, and a general lack of awareness about cancer andits causative factors.

Limited data exist on national cancer incidence andmortality rates for First Nations due to the lack of researchon cancer amongst First Nations people. Information onethnicity is not captured by most health informationdatabases, which makes it difficult to understand theimpact of cancer on different populations. Regional studieshave captured some information on cancer in First Nations,however data are often not comparable and data collectionis usually for a limited time, and therefore unable to recordand monitor ongoing trends.38

2.4 First Nations Cancer Care

Cancer care is usually provided to First Nations by aprovincial cancer agency, hospital or cancer centre. Someprovincial cancer agencies are responsible for serviceprovision, while others manage provincial cancer services,but are not direct service providers. Cancer centres areable to provide a wide range of specialized cancer careservices that may be critical for the health of many FirstNations, including screening, diagnostic tests, andtreatments such as radiation and chemotherapy. Howeverdisparities are often present throughout the continuum ofcare due to challenges in coordination and follow-up

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between provincial cancer centres and community-basedprimary care providers.

For many First Nations, health care is tied to the concept ofwellness, which states that balance and harmony must bemaintained among all elements of personal and collectivelife.39 Therefore, it is not uncommon for cancer patients toparticipate in both conventional treatment and traditionaltreatment at the same time;40 in fact, 40 percent of FirstNations adults living in First Nations communities reportedrecent use of traditional medicine.41

With cancer control emerging as an important priority,many First Nations communities have become moreinvolved in the provision of specialized care. Localcommunity-based organizations are taking the initiative toeducate community members about cancer, coordinatetrips to screening facilities, or provide support for a cancerpatient’s family. Qualitative feedback from First Nationscancer patients and their families suggests that theircommunity often has an important role to play in

supporting them through the cancer journey andmaintaining the holistic well-being of their spiritual,emotional, mental and physical needs.

Cancer Pathways

The cancer journey of each First Nations person is unique;every community, family, and individual experiences cancerin a way that reflects their distinct local realities, pastexperiences, and personal beliefs. However collaborationwith First Nations across the country has revealed thatchallenges and barriers to cancer control are more similarthan different for this diverse population. A higherprevalence of risk factors, rising cancer incidences, and gapsand barriers to health services delivery are issues commonto most First Nations.

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Elizabeth’s StoryElizabeth was diagnosed with throat cancer. When shewas diagnosed, she told her family doctor that sheneeded a week to consult a traditional medicine manbefore she began recommended treatment. During hertreatment, her husband brought her traditionalmedicines in the form of a tea she drank three times aday that was made for her by a local medicine man.

(Source: AFN Interviews conducted in 2007)

Jacqueline’s StoryJacqueline lost her son to cancer. The communitysupported her and her family throughout her son’sillness. The community held a telethon to raise moneyto help pay for the family’s living expenses inWinnipeg, where her son had to go for treatment for 6months. The Chief in Council paid for two van loads offamily to visit her son in the Thompson hospital.

(Source: AFN interviews conducted in 2007)

3. Barriers to Health ServiceDeliveryIn this section, many of the challenges that First Nationsexperience throughout their cancer journey are presented.At each stage along the cancer control continuum, leadingand promising practices provide examples of success andhope for the future of improved cancer control for FirstNations.

3.1 Access to Care in Rural and RemoteCommunities

Barriers to access to health services for First Nations livingin rural, remote and isolated communities and regions aresignificant, as many individuals have to leave theircommunities to receive basic health care.42 The multi-jurisdictional nature of First Nation health services delivery

also presents a distinct set of challenges for First Nationscancer control.

Almost 40 percent of First Nations adults feel that they haveless access to health services than do adults in the generalCanadian population.43

Figure 3: First Nations Adults’ Perceived Access to HealthServices, Compared to General Canadian Population

Source: RHS 2008/10

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Barriers to HealthService Delivery

Geographic Distance

First Nations reserve communities are often located in rural,remote or isolated areas, as defined by Health Canada inthe table below. Also, 24 per cent of First Nations living offreserve reside outside urban centres.

Table 1: Definitions of Rural, Remote and IsolatedCommunities

Source: Health Canada

More than 60 percent of First Nations communities areremote or are fly-in with no road access. The Assembly ofFirst Nations has identified that 60 percent of First Nationscommunities have less than 500 inhabitants, while onlyseven percent have more than 2,000 residents.44 Thismeans that physical and human resources are often scarcedue to geographical dispersion. For First Nations living inthese rural, remote, and isolated communities, accessinghealth services, including cancer care, is a challenge due tothe burden of travel and its associated costs.

Over 30 percent of First Nations communities are locatedmore than 90 kilometres from physician services, whichmeans that accessing primary care usually requirestransportation by road, water, air, or a combination ofthese; however, this travel may be complicated by severeweather.

The provision of cancer services to First Nations living inrural, remote and isolated communities is complicated bythe irregular availability of basic health services in theseareas. Limited options in accessible primary and specializedcare often necessitates travel to access some screening andadvanced diagnostic tests, as well as any complex

treatments. Distances from facilities dissuade many FirstNations people from accessing these services, regardless ofthe type of community in which they live. This is due to anumber of factors, including the time-consuming nature oftravel, the priority of day-to-day responsibilities in thecommunity, and significant travel-related costs.Unemployment and insufficient incomes contribute to thefact that just over one-third (34.8 per cent) of First Nationsadults struggle with meeting basic living requirements fortransportation, which limits their ability to travel to accesshealth services.45

Making services available closer to home throughcommunity-based programming, and making transportationmore affordable can help to improve health care access forFirst Nations people living in rural and remote communities.As illustrated in this report, many provinces and

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Community Definition

Rural Road access to medical services within 20-90 km

Remote Road access to medical services greaterthan 90 km

IsolatedNo year-round road access; can be reachedby scheduled or non-scheduled flights orwinter roads and has telephone and/orradio services

Saskatchewan Transportation Company Medical Pass

The Saskatchewan Transportation Company (STC)operates 29 bus routes, travelling 5.1 millionkilometers per year to serve 290 communities acrossSaskatchewan. In 2010, over 250,000 passengersutilized STC’s bus transportation services. Since 2008,STC has been committed to improving transportationopportunities for Saskatchewan’s First Nations andother northern residents by building connections withrelatively isolated northern communities, including LaLoche, Buffalo Narrows and Beauval. For personstravelling on STC routes for medical treatments, aMedical Pass is available for purchase for $53.95. Asecond pass may also be purchased for escortsaccompanying patients. The pass provides unlimitedtravel between two pre-determined locations for aperiod of 30 days. A letter of authorization from aphysician confirming that travel is for medical purposesis required. Thirteen percent of all STC passengers relyon transportation services for medical purposes.Although this practice is not culturally responsive, itpresents opportunities for the facilitation of medicaltransportation for First Nations living in rural, remoteor isolated communities.

jurisdictions have developed or are in the process ofdeveloping initiatives to improve health care access forgeographically dispersed populations, including FirstNations. For example in Saskatchewan, a medical bus passis available for individuals travelling between two locationsto access health care. The Saskatchewan TransportationCompany Medical Pass has the potential to improve theability of rural and remote First Nations to access healthservices.

Promising Practice Profile: Telehealth

Telehealth is the use of communications and informationtechnology to deliver health care services and informationover large and small distances; this may include the use ofinteractive video-conferencing for patient examinations andthe use of telephones for patient consultations. Telehealthreduces the need for travel by patients, families, and healthcare providers, which can help to improve carecoordination, timeliness of care, and equitable access tospecialized services.46

Multiple jurisdictions are currently facilitating efforts ontelehealth to improve healthcare access to remote and ruralFirst Nations communities. Health Canada’s First Nationsand Inuit Health Branch,working together with FirstNations communities, hasmade substantial efforts duringthe past five years toimplement telehealthservices.47 Canada HealthInfoway has helped to bringtelehealth solutions to over 200remote and rural First Nationsand Inuit Communities throughits telehealth investmentprojects.48

Most provinces and territoriesacross Canada are also workingto develop telehealth initiativesto improve First Nations accessto health care. Manitoba inparticular has had success incollaborating with First Nationsto provide telehealth services.

MBTelehealth, a promising practice that has emerged inManitoba, has enabled residents of the province andsurrounding areas to receive comprehensive health careservices while overcoming barriers of distance and timethrough the use of technology; it also supports healtheducation delivery and administrative support to ruralhealth authorities.49 In partnership with Health Canada,nearly 25 percent of all MBTelehealth sites are spread over26 First Nations communities.50,51 MBTelehealth uses liveinteractive videoconferencing to enable the delivery ofhealth care services, continuing education, andadministrative connections between sites across Manitoba.

In 2011, more than 1500 clinical telehealth sessions wereconducted, giving remote populations access to patienteducation, primary health care and specialities, includingoncology.52 In addition, telehealth sessions supportedcontact between patients in hospital in the three majorcities in Manitoba (Winnipeg, Brandon and Thompson) andfamily members back home.

Figure 4: Number of Telehealth Site and Sessions in FirstNations Communities

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Source: MBTelehealth

MBTelehealth has been largely successful due to strongpartnerships among First Nations communities andleadership, health care facilities and providers, theprovincial government, Health Canada, Canada HealthInfoway, and Broadband Communications North. Themultijurisdictional nature of this telehealth initiative helpsto bridge both geographic and jurisdictional divides, bymaintaining a shared vision and common goals. Telehealthis a promising practice with the potential to improve the

coordination of carethroughout the cancerjourney. By providingopportunities toovercome barriers toaccess andjurisdictionalcollaboration, and byworking to improveeducation andprofessionaldevelopment,

telehealth initiatives cut across the cancer care continuumand offer solutions to a number of health challenges facedby First Nations.

Health Human Resources

Health care professionals play a critical role in the deliveryof cancer services and are able to contribute to morepositive experiences along the cancer care continuum.Patient-centred care, combined with an understanding ofcultural needs and local realities, can help to improve apatient’s cancer journey. However access to physicians is anissue across Canada,53 and is especially acute for FirstNations, and particularly on reserves.54 Studies estimatethat one in five First Nations adults do not have access to adoctor or nurse and about one quarter of First Nations donot have a regular family doctor.55 In addition, less than halfof First Nations people perceive that they have easy accessto specialized care.

From a provider perspective, health care delivery ischallenging given the geographic dispersion of First Nationsand the large percentage living in rural, remote, andisolated communities. In a recent e-survey of health careproviders working in First Nations communities, less than50 percent of respondents indicated that they have accessto doctors in their community. It was noted that even thisaccess tends not to be consistent, as it is often provided byrotating doctors on a part-time basis, for example one dayper week. First Nations have identified that the severe

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“Our communities canonly stretch so much,something is bound toburst. Some serviceswill have to remainundone.”

The @YourSide Colleague®

In 2000 Saint Elizabeth, a not-for-profit, charitable health organization, launched @YourSide Colleague, an e-resource that offersinteractive learning opportunities and access to a network of experts and peers. Self-directed, evidence based courses weredeveloped with and for health care providers working in First Nations communities in areas such as palliative care, diabetes andclinical skills. A total of ten courses are currently available to front line health care workers, service delivery centres and staff.@YourSide Colleague provides culturally sensitive educational opportunities for health care providers, especially in rural, remoteand isolated communities, in a cost effective manner. It works to build skills and confidence among health providers at thecommunity level, enhance local capacities and improve communication in order to support better health care and outcomes.Saint Elizabeth, in partnership with Canadian Partnership Against Cancer, launched the @YourSide Colleague First Nation CancerCare Course in 2009, which includes information on prevention, detection and diagnosis, treatment, and psychological impacts.Initially introduced to more than 200 First Nations communities in Manitoba, Saskatchewan and British Columbia, the courseprovides an array of online resources and connects providers with each other and with clinical specialists in oncology andpalliative care. Formal evaluation of the Cancer Care Course concluded that it applies to the work of health care providers in FirstNations communities, can be used immediately to support practice decisions, improves cancer knowledge, and positivelyimpacts patient experiences. There has been strong uptake of this program, which indicates that many community healthworkers value the ability to have access to relevant cancer-related cultural training.

shortage of health care professionals in most communitiesis a high priority for addressing issues of health care access.

Due to the limited access to physicians, community healthnurses are the primary health care providers and the mainpoint of contact with the health care system in most FirstNations communities. For example, in the NorthwestTerritories it was found that Aboriginal people had contactwith a general practitioner at a rate almost half that of non-Aboriginal people, but rates of nurse consultations wereconsiderably higher.56 Nurses are responsible for a widerrange of tasks than in larger communities and must oftendeal with a lack of resources and funding, and heavyworkloads. In most First Nations communities, nurses takeon multiple roles and duties and as primary care providersare often the first to deal with urgent health concerns. Thisresults in a lower priority on delivering education andscreening services for cancer.

For on-reserve First Nations, retaining permanent healthcare providers is a difficult task. Few providers want to liveand work in rural and remote communities, especially in thenorth. The average community stay of a nurse is about twoyears, and in some cases can be as short as six months.57

First Nations across Canada experience difficulty inmaintaining consistent access to nursing staff, which hasserious implications in a system where nurses are theprincipal primary care providers.

In addition, many provinces have identified the need tocreate supportive environments for health humanresources working with First Nations by providingopportunities to enhance the cultural competency of frontline health workers. The @YourSide Colleague, highlighted,has helped to provide professional development for nursesand health care professionals working in or with FirstNations communities and organizations.

3.2 Coordinationof Care

The cancer pathwayfor First Nationsinvolves interactionswith multiple healthorganizations andjurisdictions; howeverensuring thatappropriate care iscoordinated between these different service providers isoften a challenge. It has been well documented that thelack of two-way communication between health careproviders in primary (community) and tertiary(hospital/cancer centre) care systems complicates thecontinuity of care for First Nations. Many existinginformation systems do not support adequatedocumentation or case management to enable thecommunication of patient information between serviceproviders.58 Communities that have been able to developpartnerships with hospitals, cancer agencies or governmentjurisdictions have been better able to maximize health careresources and improve care coordination.59

Without communication between health service providers,First Nations cancer patients are able to fall through cracksin the health care system and health services may not beproperly aligned with their distinct needs. Working togetherto overcome these challenges and improve First Nationsaccess to cancer care requires inter-jurisdictionalcollaboration. Partnerships involving federal, provincial andFirst Nations governments, as well as provincial canceragencies, hospitals, and primary care providers have thepotential to contribute to better experiences for FirstNations across the cancer care continuum.

Provincial Cancer Agencies

Cancer care in most provinces involves programs andinitiatives from provincial cancer agencies. Cancer agenciessupport the reduction of the burden of cancer on Canadiansby facilitating effective leadership, collaboration,communication and advocacy for cancer care and control.60

Some provincial cancer agencies are responsible for serviceprovision, while others manage provincial cancer services,but are not direct service providers. Most cancer agencies

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“A lot of us wear manyhats in smallcommunities, so wehave to find thesolutions ourselves.”

“There is a lack ofcoordination of servicesand communicationbetween multipledoctors. People arepassing away waitingfor treatment.”

work across the cancer service spectrum, with efforts inprevention, early detection, diagnosis, treatment and careand palliation or end of physical life care. As a result, theytouch the lives of individuals on many different levels, andat different stages of their cancer journeys.

First Nations are able to benefit from the various programsand services offered by provincial cancer agencies. ManyFirst Nations communities have developed relationshipswith cancer agencies through contact with cancerawareness, education and screening programs. Initiatives ofcancer agencies to provide services closer to home, throughmobile screening and telehealth, have the potential to easethe burden of accessibility of health services for FirstNations. In addition, some cancer agencies, includingCancer Care Ontario,61 CancerCare Manitoba,62 and theBritish Columbia Cancer Agency,63 have developedpopulation specific programs and strategies for Aboriginalcitizens in their respective provinces.

Despite evidence of some positive connections betweenprovincial cancer agencies and First Nations, First Nationshave identified the need for improved strategic alliances inorder to facilitate better communication and collaborationwith provincial cancer agencies. Some First Nations haveexpressed that existing links with external agencies,including cancer agencies, have not been developed to apoint to support extensive resource or programdevelopment that is culturally appropriate. In some regions,First Nations have identified that the role of cancer agenciesin the provision of health services is unclear.

Cancer agencies areaccountable for, orplay a significant rolein, province-widecancer planning andpolicy development.Partnerships betweencancer agencies andFirst Nations couldhelp to address someof the challengescurrently experiencedby First Nations incoordinating careacross the cancercontrol continuum, byensuring that specificstrategies designedwith and for First Nations are included in provincial cancercontrol programs. These strategies could help to developculturally appropriate resources, expand the outreach ofscreening programs, ensure timely referrals for diagnosisand treatment, and provide cancer and palliative careeducation to community members and health care workers.In Ontario, the sharing of information between First Nationsand cancer agencies has led to the development of anAboriginal Cancer Strategy and has improved the ability ofCancer Care Ontario to meet the distinct needs of FirstNations patients.

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Aboriginal Cancer Strategy, Cancer Care Ontario

In 2001, the Aboriginal Cancer Care Unit at Cancer Care Ontario (CCO) received funding from the Ministry of Health and Long-Term Care, the Ontario Tobacco Strategy, and CCO to conduct a province-wide needs assessment of cancer issues in FirstNations, Métis and Inuit populations across Ontario. The purpose of this needs assessment was to establish an evidence-basedapproach to the development of an Aboriginal Cancer Strategy for Ontario. A Five Year Strategy Plan was developed for 2004-2009 that outlined four strategic objectives - cancer surveillance and research, health promotion and disease prevention,community liaison/external relations, and supporting regional cancer programs and Aboriginal communities. The AboriginalCancer Strategy works to honour the Aboriginal path of well-being, by promoting a holistic approach to cancer education,prevention, screening and research. In its Five Year Plan, the Aboriginal Cancer Care Unit was able to successfully develop andimplement multiple initiatives, including an Aboriginal Data Indicators Pilot Project, an Aboriginal Tobacco Program, mass mediacampaigns and an Aboriginal Cancer Care Video Project. Achievements between 2004 and 2009 were important steps towardsimproving the journey of First Nations, Inuit and Métis peoples through the cancer system.

“Most of the time,western health servicesoffer their knowledgeand resources to FirstNations. This is good,however, it’s like aone-way street...thereshould be sharedknowledge which couldenhance overall careand prevention ofcancer.”

Current gaps in communication result in inconsistent carefor many First Nations, especially for patients that requireprolonged or complex treatment. For patients travellingbetween cancer centres, hospitals in urban areas, andhealth centres in First Nations communities, the lack ofcollaboration between these jurisdictions makes it difficultto ensure that First Nations are supported throughout theircancer journey. Establishing partnerships to improvecommunication between First Nations communities andcancer agencies could give First Nations health centres theability to access relevant patient information and provideappropriate follow-up care.

Creating partnerships is a process that takes time;establishing trust through compliance with the principles ofOwnership, Control, Access and Possession (see section 3.3)requires the cooperative engagement of both canceragencies and First Nations. The Aboriginal Communities andSaskatchewan Cancer Agency Network is a promisingpractice that presents opportunities for facilitatingconnections between First Nations communities and canceragencies.

Hospitals

The reliance of First Nations on hospital health servicesvaries between and within provinces, according toaccessibility, availability of services and the roles of otherhealth service providers. In many areas, the network

linking service providing agencies to First Nationscommunities is weak, which results in a lack of informationabout how the cancer care system works and the variousoptions and locations for care that are available.64

Significant overlap between provincial cancer agencies andhospitals often causes confusion and delays, as First Nationsare unsure of where to turn to access the information andservices they need.

First Nations’ utilization of hospital cancer services dependson many factors, including their geographic location,cultural preferences and the state of primary care in theirhome community. As a result, First Nations individuals mayaccess hospital services at different stages throughout theircancer journey.Hospitals acrossCanada also havevarying capabilitieswhen it comes toaccommodating andsupporting the uniqueneeds of First Nationspatients, which mayinfluence a First Nationperson’s decision to goto a hospital. SomeCanadian hospitals,including theWhitehorse GeneralHospital in the Yukon,

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The Aboriginal Communities and Saskatchewan Cancer Agency Network

Established in 2008, this virtual network provides opportunities for knowledge sharing between First Nations organizations andElders, and community health care providers, health care workers, and various chronic disease agencies, including theSaskatchewan Cancer Agency (SCA). In 2007, the SCA and First Nations communities identified existing communication gapsbetween their jurisdictions; the Network arose as a way to share contact information and take the first steps in bridging thesegaps. The Network meets quarterly via teleconference to facilitate communication between First Nations communities and thecancer system. Currently the Network builds capacity through knowledge exchange in areas of cancer control includingprevention, early detection, treatment, and supportive care. The goal is to identify and solve problems and challenges in FirstNations cancer control by collaborating in areas of mutual interest. The Network attempts to coordinate services acrossjurisdictions by building community partnerships that link services together to improve the experiences of cancer patients andtheir families. Currently the Network has approximately 30-40 members who have expressed that the Network has helped tobuild relationships and trust between First Nations and health service agencies, and is flexible and able to respond to changingneeds. Combining effective leadership, flexibility, and openness, the Network is a low cost method to connect First Nationscommunities to provincial cancer agencies.

“After a patient isdiagnosed with cancerthey go to the hospitalbut there is no link incommunicationbetween both facilities,therefore nocollaboration amongthe staff and lesssupport for thepatient.”

display positive examples of First Nations specific programsthat act as supplements to services offered by canceragencies.

A common challenge that has been identified for FirstNations cancer care is the lack of information exchangebetween hospitals and First Nations health centres. Inmany cases, data relating to the access of cancer services by

First Nations are notrecorded.65 FirstNations are notconsistently identifiedin hospital records,which createsdisconnect betweenthe First Nationspatient and the cancercare system. They maynot receive culturallyappropriate care or beable to accessculturally relevantmaterials to supportthem along their

cancer journey. This lack of identification also means thatno links are established between hospitals, provincialcancer agencies, and the home communities of FirstNations patients. This creates gaps in the coordination ofservices, as various health care providers are not given theproper information to support a patient through theirfollow-up care.

Facilitating knowledge exchange is especially important inareas where high turnover rates of health care professionalsimpede the continuity of care. Establishing informationsharing systems can help to ensure that incoming staff areup-to-date on the latest patient information as soon as theyarrive in a First Nation or a hospital. Compliance with OCAP

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Whitehorse General Hospital First Nations Health Programs

At Whitehorse General Hospital (WGH), innovativeprogramming has been changing how care is deliveredfor First Nations patients since 1993. The First NationsHealth Programs at WGH work to promote the provisionof quality, culturally-sensitive holistic health care toAboriginal people. Program services include Health andSocial Liaison Workers, access to traditional medicinesand healing practices, a traditional diet program, andCommunity Liaison Discharge Planners. WGH works toimprove the recruitment, training and retention ofqualified First Nations staff to operate these programsand provides cross-cultural training to all hospitalemployees. These highly trained hospital staff advocatefor and guide First Nations patients through the acutecare health system. The First Nations Health Programs atWGH have been identified as a leading practice inCanadian health care delivery.

“Jurisdictional issuesbetween provincial andfederal health caresystems are also anissue to ease thecontinuum of care,particularly if clientsare sent back home toremote and isolatedcommunities.”

Mustimuhw Community Electronic Medical Record

This community Electronic Medical Record (cEMR), a not-for-profit product owned by Cowichan Tribes, is currentlydeployed in over 50 First Nations in three provinces: BritishColumbia, Manitoba and Saskatchewan. Mustimuhw is acomputer software program that collects personal healthinformation and is designed to meet the uniquerequirements of First Nations community-based HealthCentres, by recognizing and honoring the OCAP principles.This cEMR aims to meet the specific health care needs ofFirst Nations by integrating community members, healthcare providers and technology in delivering care.Mustimuhw provides health professionals with quickaccess to secure patient information and allows for thecollection of First Nations identifiers. Education andeffective relationships have proven to be essential to thesuccess of the program. This cEMR has helped to supportcommunity information management needs; there is asense of pride and ownership at the community level ofthis grassroots movement. Mustimuhw also providescontinuity for First Nations patients and decreases thechance of someone getting lost or forgotten in the system.First Nations who have adopted Mustimuhw are able toconnect ethnocultural identifiers to a range of healthassessments and outcomes. Partnerships established inthis project have helped to improve access to informationacross jurisdictions, without compromising individualcommunities’ ownership, control, access and possession oftheir data.

(Ownership, Control, Access and Possession) protocols isvital to the success of any agreement that involves FirstNations information. Respect of the First Nations right to govern their own datamust exist at the core of all collaboration efforts betweenFirst Nations health centres and hospitals.

The development of information sharing policies dependson the unique capacities of individual hospitals and FirstNations communities. Leading e-technology practices, suchas the Mustimuhw Community Electronic Medical Record,provide examples of First Nations specific electronic healthrecord systems with great potential to positively impact thecurrent state of cancer control for First Nations.

Levels of Government

Jurisdictional boundaries contribute to the complexity ofcoordinating First Nations cancer care. Federal,provincial/territorial, and First Nations governments eachhave a role to play in the delivery of health services to FirstNations. Partnerships that work collaboratively acrossjurisdictions are therefore necessary to improve cancerpathways for First Nations.

Gaps that exist in First Nations cancer care can be partiallyattributed to jurisdictional ambiguity. Providing seamlesscare is a significant challenge, given the diversity ofpriorities and interests amongst the multiple levels ofgovernment involved in the delivery of health services toFirst Nations. In practice, coordination of programs andservices is often a result of informal collaboration at theregional and community level.66 Certain regions stand outfor their high levels of cooperation, and the potential existsto adapt elements of these successful relationships forapplication on a broader scale. Strengthening inter-jurisdictional relationships can cut across the cancer controlcontinuum by providing clarity on the roles andresponsibilities of each jurisdiction involved in First Nationscancer care. Especially for First Nations living in remote andisolated reserve communities, where geography alreadyacts as a significant barrier, cooperation among federal,provincial/territorial and First Nations governments canhelp to ease burdens of accessibility.

For example, qualitative feedback from First Nationssuggests that coverage for medical transportation has notkept up with increasing and changing demands. NIHB is afederal program designed to provide coverage for certainhealth services that are not insured provincially. 67 WhileNIHB does work to provide medical transportation for manyFirst Nations, the lack of communication between thisfederal program and provincial cancer care providers meansthat services are not always aligned with the needs of thepatient.

Since the 1970s, FirstNations governmentshave expressedaspirations to designhealth programs andestablish services thatare generated andmaintained by FirstNations communitiesthemselves.68

Integrating FirstNations governmentsin the development ofhealth initiatives canhelp to ensure thatcollaborative effortssupport the uniqueneeds of First Nationscommunities andindividuals. Both the1977 Indian HealthPolicy and the 1988Health Transfer Policyprovided a framework for the assumption of control ofhealth services by First Nations based on the concept ofself-determination in health.69 Health transfers have helpedFNIHB to forge new relationships with First Nationscommunities through formal agreements to work togetherto develop, sustain and enhance their good health and well-being.70

Many First Nations communities have been able to benefitfrom transfer agreements; as of 2006, a total of 160 transferagreements, representing 46 percent of all eligible FirstNations and Inuit communities, have been signed.71 Despitethe potential of health transfers to support First Nations’

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“Travel is establishedby a separateorganization than thoseproviding the cancercare. There is often adisconnect incoordination, if wehave to send a patientto an appointment thetravel arrangements(financial) may not bein place by the requiredtime and theappointment is oftendelayed.”

aspirations to exercise direct control over their community-based health services, concerns over sustainability havebeen raised by both FNIHB and First Nations. In a 2005national evaluation of the Health Transfer Policy, FirstNations reported that funding provided through healthtransfers was not able to adapt to rapidly growing andchanging First Nations communities and did not take intoaccount off-reserve and non-status users.72

Promising Practice Profile: British Columbia TripartiteFirst Nations Health Plan

The British Columbia (BC)Tripartite First NationsHealth Plan73,74 is anexample of efforts beingmade to develop multi-jurisdictional governancestructures that effectivelyincorporate First Nations

leadership in the development of health policies. In 2005,the British Columbia First Nations Leadership Council(FNLC), the Province of British Columbia and the FederalGovernment negotiated the Transformative Change Accordto achieve the goals of closing the social and economic gapbetween First Nations and other British Columbians, andestablishing new relationships based upon mutual respectand recognition.75 The accord included actions toacknowledge the importance of First Nations’ governance insupporting health community.

The Tripartite First Nations Health Plan was signed by theFirst Nations Leadership Council, and the federal and BCgovernments in 2007. As an element of the Change Accord,this Health Plan identifies priorities for action to close thehealth gap between First Nations and other BritishColumbians. A series of founding principles were definedfor the development and implementation of a newgovernance system for health services and to guidesystemic changes. This ten-year plan included twenty-nineaction items to support the development of local healthplans for all BC First Nations and recognizes thefundamental importance of community solutions andapproaches. The Health Plan is an enabling document thatlaid the foundation for federal, provincial and First Nationspartners to explore, develop, test and implement newpriorities, structures and processes over time.

The Framework Agreement on First Nations HealthGovernance was signed in 2011 as a part of this HealthPlan, to transfer the responsibility, resources andinfrastructure of the federal government to a new FirstNations health authority. The agreement removes thefederal government from the direct service arena, andestablishes and recognizes the central role of First Nationsin the design and delivery of health services. Under theagreement, the province will continue to provide acute careto First Nations people, while First Nations health authoritywill be responsible for on-reserve programs, includingprimary care and public health initiatives. This transfer ofauthority has the potential to streamline the administrationand integration of those services with the provincial systemto close gaps in First Nations health care.76

Tripartite Agreements have the potential to cut across thecancer control continuum by facilitating efforts to improvethe coordination of culturally appropriate care to FirstNations. Collaboration between jurisdictions to improveinformation sharing and develop community-based healthinitiatives can assist existing efforts to address gaps in FirstNations cancer care. The BC First Nations Health Planincludes specific actions to coordinate efforts in chronicdisease management, including cancer care, and provideequitable access to health services that meet the needs ofFirst Nations communities.77

3.3 Patient Identification

Without reliable health data specific to First Nations, it isdifficult to measure the impact of cancer; design programsto address gaps in cancer control; and coordinate theseefforts across jurisdictions. Currently there is no means toidentify First Nations status among cancer patients becausethis information is not widely recorded in health care recordsystems. The ability to identify First Nations cancer patientscan help jurisdictions to prove the value of programs theybelieve are having positive impacts and identify areas forimprovement.

Barriers exist, both within and outside the health system, todeveloping First Nations patient identifiers and datastandards. These may include a lack of awareness and/or alack of supporting relationships or networks and significantassociated costs. Nonetheless, several jurisdictions havedeveloped their own ways of identifying First Nations

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cancer patients, and there is considerable variation anddiversity across Canada with respect to the mechanismsthat have been used.78 Some practices have attempted toidentify First Nations through cancer registries, or by linkingprovincial health records with various databases. Othershave used postal codes and health card numbers asidentifiers.

Health data collection for First Nations requires expertise inthe design of complex health information initiatives, as wellas a deep understanding of the requirements associatedwith First Nations data. Fulfilment of the principles of OCAPis critical to the successful development of First Nationsidentifiers in any health database. First Nations recognisethat everything is inter-related, and this applies to researchand data collection processes. Engaging collaboratively withFirst Nations leadership can help to ensure that FirstNations values are incorporated into the design,implementation and management of patient identificationsystems, and the use of the data generated through thesesystems.

Ownership, Control, Access and Possession

Improving the coordination of cancer care to First Nationsrequires that partnerships effectively include First Nationsgovernments and incorporate negotiated processes orprotocols. It is important that these partnerships arerespectful of First Nations cultural values and perspectives,which includes honouring the First Nations principles ofOwnership, Control, Access and Possession (OCAP) of alltheir own data. OCAP articulates the First Nations ways of knowing about information, recognizing that everything is

inter-related. Honouring OCAP principles ensures thatrelationships are established with foundations of trust andrespect. A holistic, community centred view must be takenfor everything from policy and planning, relationshipbuilding, and program implementation and evaluation.

The right of First Nations communities to own, control,access and possess information about their peoples isfundamentally tied to self-determination and to thepreservation and development of their culture. OCAPcompliant partnerships help to ensure that the coordinationof services along the cancer care continuum is respectful ofFirst Nations rights and values.

As of November 2011, there were fifty known ethnoculturalidentification systems in existence or in the process ofdevelopment in Canada; these systems were spreadgeographically across the country and across a widespectrum of health service domains. Some includedidentifiers for the general Aboriginal Canadian population,and others were specific to each of the First Peoples. Eachsystem demonstrates a successful approach to achievingindividual project objectives; together, they presentopportunities for the development of more widespreadidentification systems.

Included in these fifty known systems are eight enablingpractices that support the development and use of patientidentification systems through identification standards,process harmonization and creating awareness.

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OCAP Component Definition

Ownership The notion of ownership refers to the relationship of a First Nations community to its cultural knowledge, data andinformation. This principle states that a community or group owns information collectively in the same way that anindividual owns his or her personal information.

Control The aspirations and rights of First Nations to maintain and regain control of all aspects of their lives and institutions includeresearch and information. This principle asserts that First Nations, their communities and representative bodies are withintheir rights in seeking to control research and information management processes which impact them.

Access First Nations people must have access to information and data about themselves and their communities, regardless ofwhere these are currently held. This principle also refers to the right of First Nations communities and organizations tomanage and make decisions regarding access to their collective information.

Possession Although not a condition of ownership, possession of data is a mechanism by which ownership can be asserted andprotected. When data owned by one party are in the possession of another, there is a risk of breach or misuse. This isparticularly important when trust is lacking between the owner and possessor.

Table 2: OCAP Components

Source: First Nations Information Governance Centre

Need for Information

First Nations have acknowledged that current processes foridentifying First Nations cancer patients are insufficient andhave recognized the need to address this gap throughcollaborative action. Identifying First Nations at the healthsystem level can enable data collection on cancer incidenceand mortality rates, as well as relationships between cancerand other health issues. In many communities, thisinformation does not exist, so it is difficult for communitymembers to have a complete picture of the current gaps

and barriers in cancercare. The inclusion ofethnoculturalidentifiers in healthsystems will contributeto the development ofbetter responses tothe unique healthchallenges faced byFirst Nations acrossCanada.

Supporting a patient’s journey through the cancer systemrequires an effective flow of information between a patient,their family, and community-based health care providers.However for First Nations, the lack of acceptable systemsfor identifying patients’ ethnicity has impeded the flow ofthis information and created barriers for accessing culturallyappropriate cancer care. Without mechanisms to identifyFirst Nations throughout their cancer journey, many FirstNations cancer patients are unable to benefit fromculturally responsive services, such as patient navigation,that may be available at a local cancer centre, hospital, orhealth centre.

Jurisdictions and independent organisations across thecountry have recognised that gaps exist in theidentification; broad based interest in ethnoculturalidentification has been indicated by the breadth of practicesacross health domains and jurisdictions that are currentlyworking to address these gaps. For example in BritishColumbia, the need was identified for the development andadoption of a provincial Aboriginal administrative datastandard to ensure that information collected is complete,comparable and effectively used for planning and reportingpurposes.79

Data Sources

Every province/territory has a cancer registry, which collectsinformation on residents with a diagnosis of cancer. Theseregistries are multi-source databases, meaning that theydepend on their ability to match and link different types ofpatient records. However not all provincial/territorialcancer registries use the same types of data sources in thesame way, which complicates the feasibility of comparingcancer control data across jurisdictions.

There are six potential sources available to cancer registriesfor identifying First Nations patients, which are used tovarying degrees by the provinces and territories. Thesesources include: mortality databases from Vital Statisticsregistries, patient registration records and clinical medicalrecords from cancer centre, hospital or physician reports,First Nations registers, provincial/territorial healthinsurance registers and the Census. Each of these sources

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“We need statisticalinformation toadvocate for our needs,data will help supportstrategic direction forcommunities.”

The Aboriginal Administrative Data Standard (AADS)

The Aboriginal Administrative Data Standard aims toenable consistency in the way that the British Columbiangovernment promotes identification of Aboriginalcitizens. It is a guide to British Columbia ministries andaffiliated agencies to support the collection of self-reported data on Aboriginal identity by applying a set ofstandardized questions and data elements to theirinformation management systems. The AADS came intoeffect in 2007 and applies to all nine ministries andagencies responsible for the delivery of services andprograms designed to improve social and economicopportunities and outcomes for Aboriginal peoples,including their health. It represents the first time aCanadian jurisdiction has set a cross-governmentalstandard for First Nations, Inuit and Métis identification.Data elements include an Aboriginal identity indicator, aFirst Nations status indicator, and a First Nations on-reserve indicator. The collection of data specific to eachof the First People’s will support culturally appropriate,effective and efficient policy, program and servicedevelopment.

produces its own barriers to identifying First Nations incancer registries. For example, cancer centres are keyparticipants in cancer control programs and services, butnot a primary data source for registering new cancer casesin some jurisdictions; therefore the use of cancer centrereports as identifiers may leave gaps in First Nations specificinformation.

The information pathways that inform cancer registries arenot always direct and may include linkage with systemswhich do not contain First Nations identifiers. The transferof patient information between multiple records systemsmay therefore contribute to gaps in the identification ofFirst Nations throughout their cancer journeys.

Of the potential data sources for cancer registries, FirstNations registers are able to cover a greater proportion ofthe First Nations population. A large number of Canadianswho self-identify as First Nations are also registered on theIndian Register, which captures 100 percent of activeregistered Indians. Data linkage projects, such as theUnama’ki Client Registry, provide promising examples ofinter-jurisdictional collaboration working to improve theavailability of First Nations information and support betterhealth planning.

Health Care Providers

The collection of ethnocultural identifiers during a patient’scancer journey involves healthcare professionalsresponsible for asking identification questions or inputtingidentifier data into records systems. However in manyjurisdictions, there is lack of awareness of health databases,the type of information they hold and how First Nationsidentifiers can help to enhance these databases. Expertisein the design and implementation of complex First Nationshealth information initiatives is usually concentratedaround clusters of experienced individuals andorganizations. As a result, many health care professionalsthat could benefit from improved First Nations patientidentification processes are often not in a position to act.

Consistent collection and recording of First Nationsidentifiers by frontline health staff has been identified as abarrier for implementing more widespread systems. Thesefrontline staff include clinicians or administrative staff inhospitals, cancer centres, primary care physician offices,community care centres and First Nations health centres.Time constraints, language barriers, and issues of culturalcompetency between staff and First Nations patientsrestrict the ability of these care providers to identify FirstNations as they access health services. 80 Education andtraining are required to prepare frontline staff to askpatients ethnocultural identification questions in arespectful and safe manner. Cultural competency programs,such as the one developed by the Aboriginal NursesAssociation of Canada, work to increase the number ofhealth care professionals trained to understand the culturalcontext of working with First Nations.

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Unama’ki Client Registry

The Unama’ki Client Registry (UDR) is an anonymouselectronic registry of community members from fiveUnama’ki (Cape Breton) First Nations, who areresponsible for delivering a wide range of community-based health services. Members were identified usingIndian Registry system data and demographic data fromelectronic medical records used at the five First Nations’health centres. The UCR allows linkage with provincialhealth data sources by including the Nova Scotia HealthCard numbers of the 9,888 First Nations communitymembers currently registered in this system. FirstNations communities recognized that provincial dataholdings are a rich source of information on chronicdisease, quality of care and health service utilization.This registry allows communities to access thisinformation from a variety of provincial systems. TheUCR is the first of its kind in Canada; it is able to combineFirst Nations, federal and provincial government data toallow extraction of administrative data for use by FirstNations in their own health planning. This practice isOCAP compliant, as the UCR cannot be accessed withoutthe consent of the community. The UCR arose from aninitial data sharing agreement between First Nations,provincial and federal governments. It is an importantinnovation that has contributed to better evidence ofhealth trends and needs for Cape Breton’s First Nations.

Promising Practice Profile: Health Insurance ClientRegistries

Provincial health insurance client registries typically cover avery high percent of the provincial population. Currently,two territories include a First Nation status verificationquestion during health insurance application processes, aswell as First Nations identifiers in provincial health cardnumbers. Identifying First Nations through these registriescreates the potential to link this information with otherdata sources that incorporate provincial health cardnumbers in their records.

The Northwest Territories and Nunavut demonstrateleading practices in collecting First Nations identifiers andintegrating this information with cancer registries. In bothof these territories, health care plan client registries captureAboriginal people specific status by including an alpha ornumeric character that denotes ethnicity in all personalhealth card numbers. This character is used by a widevariety of health service providers, as well as policy makersand researchers, as a starting to point to help clientsnavigate to the most appropriate services for their needs, aswell as monitor population health status and outcomes. Forexample, the Stanton Hospital in the Northwest Territoriesuses health card identifiers as a trigger to ask patientsadmitted to the hospital about their preferences for a rangeof culturally relevant supports.

Health card numbers are used within these territories torecord linkage across different health databases, withinstrict parameters for data security and privacy. For example,cancer registries in both the Northwest Territories andNunavut are able to determine the ethnic status of patientsby including health card numbers, with Aboriginalidentifiers, on all cancer registration forms. By using healthcare plan client registries as sources of ethnoculturalidentifiers, these cancer registries are able to better assessthe burden of cancer among First Nations.

3.4 Community Awareness and CancerEducation

In most First Nations communities, everyone knowssomeone who has been affected by cancer, or has beenpersonally affected themselves.81However in some cases,past community experiences of poor cancer outcomes havecreated barriers to open discussion about the disease.While most First Nations are aware that cancer is aproblem, there is a lack of education about cancer that isculturally relevant for First Nations to help stimulate thesediscussions. Knowledge gaps have contributed to a lack ofawareness about cancer, and how it can be prevented andtreated.

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Cultural Competence and Cultural Safety in NursingEducation

The Canadian Association of Schools of Nursing (CASN)and the Aboriginal Nurses Association of Canada (ANAC)both recognized the need to improve the health deliveryand outcomes for First Nations, Inuit and Métis peoples.A particular area of concern was the need for allregistered nurses, who graduate from nursing programsin Canada, to understand the unique context ofdelivering care to First Nations, Inuit and Métis peoples.Incorporating competency training into nursing curriculawas identified as a way to improve the cultural safety ofinteractions between Aboriginal patients and nurses. Aframework for core nursing education competencies wasdeveloped with six main focuses - post-colonialunderstanding, communication, inclusivity, respect,indigenous knowledge and mentoring and supportingstudents for success. The framework has implications fornursing employers, ongoing education for nurses, andrelationships between nurses and patients. Nursingschool curriculum projects have been implemented in sixschools across Canada to utilize this framework in theirprograms. In addition, ANAC worked with the CanadianHealthcare Association to develop, implement andevaluate a continuing education course in culturalcompetence and cultural safety.

Views of Cancer

Cancer is a single word, but it represents more than 200different diseases. The complexity of these diseases and ofhealth systems in general, makes tackling cancer a difficulttask for most Canadians. For First Nations, distinct historicaland cultural contexts contribute to unique views of cancer,which may impact the delivery of effective cancer care.

While views of cancer are not universal among First Nationspeople, there is a generally negative attitude toward cancerin most communities.82 Many Canadians, including FirstNations, maintain the belief that cancer is an unavoidabledeath sentence.83 In some First Nations communities,cancer is a taboo subject surrounded in secrecy and fear.84

Traditional spirituality, which is important to a majority ofFirst Nations, may contribute to unique beliefs aboutcancer. For example, the Dene Nation believes thatspeaking explicitly about terminal illness and death mayhasten death.85 These and other views have profoundimplications on receptiveness to, and participation in,cancer education, prevention and treatment programs.

First Nations’ cultural conceptions of cancer may help toexplain lower rates of participation in prevention, earlydiagnosis, and treatment programs.86 Cancer informationresources generally do not address the uniqueness of FirstNations cultures, therefore First Nations may be unaware ofthe existence or benefits of these programs, and mayexperience difficulty in accessing the relevant resources toinform themselves. Education is needed not only to informpeople about the facts of cancer, but also to help overcomedeeply held beliefs about cancer that may contribute to

later-stage diagnoses.First Nations haveidentified thatadequate informationcan help to enhancetheir sense of controlthroughout the cancerjourney, as well asdiminish their fears.87

Many health careprofessionals areunaware of thehistorical and culturalfactors that contributeto First Nations’ viewsof cancer, and views ofgeneral health care.Cultural differencescreate barriers toeffective cancer care,as caregivers generallydo not understand and are unable to address First Nations’perceptions of cancer. Many health care providers haveexpressed a desire to have more information about theculture of their clients to help improve their culturalsensitivity and provide more effective cancer education.88

Resources such as the Cancer Info-Kit for First Nations ofQuebec have been developed to give care providers theinformation they need to help First Nations overcomemisconceptions about cancer.

Prevention through Education

Cancer can, to a large extent, be prevented; in fact, it isestimated that about half of cancers can be prevented byadopting healthy behaviors including healthy eating,physical activity, and maintaining a healthy weight.89

Although not all cancers have known causes, and somepeople may develop cancer without having any of theknown risk factors, studies have shown that healthy livingcan help to reduce cancer risk.90 However many FirstNations are unaware of the association between cancer andprevention due to gaps that exist in basic cancer education.

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Corrine’s StoryCorrine, a breast cancer survivor, knew that hermother and grandmother had breast cancer, and shebelieves cancer is on the rise in the community.However until very recently, no one spoke about it.While people are more likely to talk about cancer now,she says that there is little information available in thecommunity.

(Source: AFN interviews conducted in 2007)

“We need community-based education andculturally responsiveresources related tocancer and screening,the role of nutrition andphysical activity, andhow to develop supportgroups or talking circlesin communities.Resources need todescribe that cancertreatments would nothinder or affect FirstNations spirituality.”

Cancer is generally not perceived as having any link toprevention, and common risk factors linked to chronicdisease are often not recognized as also being relevant tocancer.

In most regions, the effective implementation of educationand awareness programs depends on formal and informalcollaboration between multiple levels and jurisdictions.Personal contact at the community level has been identifiedas one of the most effective ways of educating and buildingawareness, however these resources are often in shortsupply, especially in remote and isolated First Nationscommunities, and training is inconsistent. 91 In a recent e-survey of health care providers working in First Nationscommunities, less than half of respondents indicated thatthey have activities and resources related to cancerprevention in their communities. In many communities,prevention is not a priority due to shortages of healthworkers, and issues of access due to geographic isolation.

These challenges arecompounded by thelack of availableresources foreducating First Nationson the importance ofprevention and how toinitiate preventionefforts in their owncommunities.

First Nations haveidentified that for cancer prevention efforts to be effective,educational resources should address the holistic approachto health, by incorporating the determinants of health andidentifying links between cancer risk factors and protectiveefforts against other chronic diseases. Community basededucation initiatives, developed with and for First Nations,have had success in demonstrating that the prevention andcontrol of chronic diseases, including cancer, can be

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Cancer Info-Kit for First Nations of Quebec

This info-kit offers a synthesis of knowledge related tothe problem of cancer and its impact on the First Nationspopulation of Quebec. It includes a wealth ofinformation on the continuum of care and services, fromprevention and palliative care, to cancer treatment, aswell as symptoms of the disease, its detection, diagnosisand follow-up. The fifteen types of cancer most prevalentamongst First Nations of Quebec have been profiled andvarious resources in the fight against cancer have beenidentified. This info-kit was developed, with funding fromthe Canadian Partnership Against Cancer, for caregiversworking with First Nations populations to increaseawareness of the context of providing care to FirstNations, as well as the factors and conditionscontributing to First Nations health. Input from FirstNations cancer patients, health professionals, andcaregivers worked to inform this info-kit, along withtechnical and medical information from Canadian CancerSociety statistics and publications. By January 2011, thisinfo-kit had been distributed to First Nations communityhealth centres, as well as Aboriginal friendship centres,throughout Quebec.

“A knowledge base islacking that needs to beaddressed regardingcauses and prevention.Pockets of awarenessexist about cancer butnot prevention.”

Tobacco Addiction Recovery

The Tobacco Addition Recovery (TAR) program is asubsidiary of the Partnership to Assist with Cessation ofTobacco (PACT) in Saskatchewan. It was developed foruse in Aboriginal communities, to educate First Nationspeoples on the differences between non-traditional andtraditional tobacco use. The goal of the TAR program is toprovide support for smoking cessation in a culturallyresponsive way through the use of traditional stories,such as the story of the White Buffalo Calf Woman. TheSaskatchewan Ministry of Health and the Pharmacists’Association of Saskatchewan collaborated with FirstNations elders to develop a toolkit and presentationresources to be delivered to communities. Program staffhave travelled to 25 reserves and delivered over 50presentations and workshops, since the program waslaunched in 2010. Program staff have also worked totrain medical staff in First Nations communities aboutsmoking cessation and about the culturally responsivetools that are available. Included in the TAR Program areprevention strategies and educational resources aboutthe benefits of quitting smoking.

integrated into normal daily life. Programs such as theTobacco Addiction Recovery Program in Saskatchewanincorporate traditional First Nations culture and spiritualityinto the development of culturally relevant resourcesdesigned to assist First Nations in maintaining healthylifestyles. Although they may not be directly related tocancer prevention, these and other programs are workingto provide education on shared risk factors for chronicdiseases and empower First Nations to take control of theirown health.

Across the Continuum of Care

The lack of culturally responsive resources for First Nationsexists throughout the patient journey – in addition toprevention efforts, there is a recognized need for culturallyappropriate, locally relevant, cancer specific resourcesacross the continuum of care to help increase communityawareness. The diversity of First Nations communitiescreates a challenge for First Nations education initiatives.The wide variety of First Nations languages, cultures andspiritual traditions, as well as economic, social and politicaldifferences between communities in various provinces,influences the context for providing cancer education. FirstNations have identified that for awareness programs to besuccessful, they must be adaptable to the realities faced ineach community.

In particular, language barriers complicate the ability ofhealth organizations and different jurisdictions to

implement cancereducation programs.For First Nations with alimited understandingof English and/orFrench, fewerresources exist toprovide cancerinformation. Complexcancer terms are often

difficult to translate, which further complicates theprovision of information to cancer patients, their family andtheir community. A significant portion of First Nationslanguages do not have a word for cancer, and many culturaland spiritual traditions assert that speaking explicitly aboutterminal illness and death may hasten death.92 The lack ofcancer education available in First Nations languages may

contribute toconfusions aboutcancer, the cancersystem, and treatmentoptions. Across the cancercontrol spectrum,efforts are underwayto overcome languageand other barriers toincrease First Nationsawareness aboutcancer and give

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“Programs must bedesigned on acommunity bycommunity basis; thereis no one size fits all.”

“Cultural translation ofmedical info is needed -cancer information isnot getting out to thepopulations. Links needto be established.Cultural translation ofmedical informationneeds to be moreaccessible.”

Let’s Take a Stand Against...Colorectal Cancer

Let’s Take a Stand...Colorectal Cancer (LTASACC) wasdeveloped by Cancer Care Ontario to increase knowledgeabout colorectal cancer, risk factors and prevention inAboriginal communities. LTSACC is an educational andhealth promotion tool to empower local healthcareproviders with culturally relevant information andmaterials. The program was launched in 2008, with morethan 1,500 tool kits distributed to provincial and nationalAboriginal organizations and service providers, andOntario First Nations. Tool kits include resources that aresensitive to the cultural realities of First Nationscommunities and work to overcome literacy andlanguage barriers through the use of interactive andvisual components. Tool kits are accessible by direct mail,which has helped to improve access to resources in rural,remote and isolated communities. Train the trainerworkshops were also developed to facilitateintercommunity and inter-organization networking;these workshops have been successful in producingincreased knowledge and the sharing of concrete ideasfor educating communities. As of July 2010, 27 regionalworkshops had been held, with 378 Aboriginal healthcare providers and educators trained. In addition, amedia campaign was launched in 2009, delivering publicservice announcements on Aboriginal radio stations,often in Aboriginal languages. The culturally relevantmessages provided by the LTSACC program havecontributed to successful community education effortsfor First Nations across Ontario.

individuals the ability to educate their communities in away that is locally relevant. Cancer Care Ontario’sawareness initiative entitled “Let’s Take a StandAgainst...Colorectal Cancer” has worked to provide tool kitsand workshops that promote culturally relevant messagesabout colorectal cancer to help increase First Nations’awareness.

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4 Patient ExperienceEleanor Carriere’s Cancer PathwayEleanor Carriere was a First Nation breast cancer survivorfrom Nelson House Manitoba. Her story has been presentedin her own words, and was recorded and transcribed withher permission and consent. Eleanor’s story brings thecancer journey to life and reminds us how cancer impactsreal people, their families, and their communities.

Sadly, Eleanor experienced a recurrence of her cancer andhas since passed away. It was her wish that her cancer storybe shared to help illustrate the cancer journey of FirstNations in Canada. We thank Eleanor for sharing the storyof how she courageously overcame obstacles along hercancer pathway.

Eleanor’s full story is presented throughout section 4.0.

4.1 Beginning the Cancer Journey: Screeningand Diagnosis

Controlling cancer amongst First Nations goes beyondcaring for those who have already been diagnosed withcancer, to include all members of the population, eventhose that are well. For some cancers, there is no knowncause; for others, theremay be no signs orsymptoms until the canceris at a later stage.93,94 Earlydetection of cancerthrough screening ofhealthy populations hasproven effective inreducing mortality andmorbidity from somecancers.95

Patient Experience

Most provinces and territories now offer organizedscreening programs for breast, cervical and colorectalcancers; however participation in these programs is lowerfor First Nations than for the general Canadian population.96

A complex array of factors, including geographic isolation,personal beliefs and fears, and health system capacities,contribute to barriers that impede First Nations’ access toscreening services.

Evidence shows that more than half of all cancers can beprevented or detected early enough to be treatedsuccessfully. However for many First Nations, the cancerjourney does not begin until their cancer has progressed toan advanced stage. Addressing barriers to accessing cancerscreening and improving the timeliness of cancer diagnosesare critical elements of controlling cancer in First Nationspopulations.

Early Detection

Early detection means finding a cancer at an earlystage; when cancer is found early enough, it is ofteneasier to treat.97 Screening programs across Canadaare currently working to detect as many cancers aspossible, as early as possible. At present, informationon the current status of cancer screening among FirstNations populations is lacking, primarily because mosthealth surveillance systems in Canada do not captureinformation on ethnicity.98 However all of the researchstudies that have been done on this topic show thatwhile some of these programs are reaching FirstNations communities and improvements are beingmade in some areas, access to screening services isnot consistent and barriers still exist.99

Cancer screening is a provincial responsibility; canceragencies and ministries of health provide, organize andcoordinate screening programs for their populations.Where no organized programs exist, opportunisticscreening takes place in doctors’ offices or in specializedclinics.100 First Nations’ participation in screening programsvaries according to multiple factors, including the type ofcancer. The following section describes First Nations’interactions with screening programs for three prevalentcancers - breast, cervical, and colorectal.

Breast Screening

Breast cancer screening programs, including regularmammograms, clinical examinations and breast self-examination, are in place in most provinces and territories,and are coordinated to meet national standards. TheCanadian Task Force on Preventive Health Carerecommends that women between the ages of 50 to 69 and70 to 74 should have a mammogram once every 2 to 3years. Routine mammography is not recommended forwomen between the ages of 40 to 49 but women at highrisk should consult with their physician. Mammographyscreening, offered in an ongoing and timely basis throughorganized programs, could potentially reduce mortality dueto breast cancer by as much as 25 percent102 .

Figure 5: Percentage Of First Nations Women Aged 40 OrOlder Reporting Having Had A Mammogram In TheirLifetime, By Age

Source: RHS 2008/10

Since 2003, the overall participation of First Nations womenin breast screening programs has improved. Figure 5 showsan increase in the percentage of First Nations women aged60 years or older having had a mammogram (82.1% and71% respectively).103 In addition, more women are engagingin breast self-exams, and engaging in breast self-examsmore frequently; in fact, 30 percent of First Nations womenreported having performed a breast-self exam on a monthlybasis.104

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However First Nations women in general tend to have lowerrates of participation in breast screening programs,compared to the nationally established target for allCanadian women of 70 percent participation.105 Of FirstNations women, aged 18 years or older, 40 percent havenever performed a breast-self exam, 59 percent have neverhad a mammogram, and 5 percent have not had amammogram in the past five years.106 The lifetimeprevalence of mammograms among First Nations femaleslags behind that of females in the general Canadianpopulation.

In Ontario, a Train the Trainer project is working to improvethe participation of First Nations women in breast screeningthrough community-based education and awarenessinitiatives. Collaboration between multiple health and FirstNations organizations have contributed to the design,implementation and success of this project.

Cervical Screening

Cervical cancer is one of the most preventable cancers; thePapanicolaou (Pap) test has been used to screen women forthe past 50 years and is estimated to identify 95 percent ofcancers107. Although there has been some debate about theappropriate interval of screening, most provinces/territoriesrecommend that women who are sexually active have a Paptest every 1 to 3 years, depending on previous testresults108. Organized cervical screening programs are inplace in most provinces and have been developed accordingto national standards; however, no programs are availablein the territories.

The Pap test is one of the most effective and successfulmethods of cervical cancer prevention and earlyintervention; in fact, organized Pap testing has the potentialto reduce cancer rates by 62 percent109.

Availability of cervical screening varies depending on localhealth care providers, including the availability of nurses ornurse practitioners who are trained to perform the Pap test.Evidence shows that the gap is closing between FirstNations women and the general Canadian population interms of Pap smear testing. In 2008/10, 74 percent of FirstNations women had had a Pap test in the last three years,compared to the 72.8 percent of females in the generalCanadian population.110 Only 9.7 percent of First Nationswomen have reported that they have never had a Paptest.111

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Aboriginal Breast Health, Train the Trainer Project

This project was funded by the Canadian Breast CancerFoundation, and was developed by members of theHamilton Women’s Health Networking Group, incollaboration with representatives from the De dwa dadehs nye>s Aboriginal Health Centre, City of HamiltonPublic Health Services, the Juravinski Cancer Centre andthe Ontario Breast Screening Program. Culturallysensitive materials were developed and Aboriginalwomen were recruited to lead their community towardsgreater breast health awareness. The goal of the project,which was launched in 2006, is to empower Aboriginalwomen to engage in breast health education and routinemammography. The Train the Trainer approach isdesigned to increase the level of education andawareness of breast health among front line workers inAboriginal communities, as well as health care providersworking in mainstream services. The project works tomake staff more aware of Aboriginal cultural values,health beliefs and fears, so that they are able to provideculturally relevant education in their communities. Thetraining program included a toolkit, which contained amanual and supporting resources, and an Aboriginalspecific breast-health video called “Tits in the Wringer”.Overall, the program has increased knowledge in breasthealth, breast cancer, early detection practices andhealthy lifestyle choices. Communities that have engagedwith the project have reported increased participation inbreast screening over a three year period.

Table 3 : Proportion of First Nations Women, by LastInstance of Pap Test

Source: RHS 2008/10

Colorectal Screening

Colorectal cancer is 90 percent preventable if detected early 112. The entry-level screening tests for colorectalcancer include the fecal occult blood test (FOBT), guaic-based fecal occult blood test (gFOBT) or fecalimmunochemical test (FIT). The Canadian Task Force onPreventive Health Care recommends that men and womenover the age of 50 have an FOBT every one or two years;however these guidelines are currently under revision.Organized screening programs for colorectal cancer arerelatively new in Canada. As of early 2012, organizedscreening programs were established across the countrywith ten provinces and one territory having announced orcurrently running organized colorectal cancer screeningprograms or pilot programs 114.

In most cases, colorectal screening tests are available fromfamily physicians, or may be mailed out directly to clientsdepending on the screening program in eachprovince/territory. However, there is limited informationavailable on First Nations participation rates for colorectalscreening. In a recent regional survey by Cancer CareOntario, 72 percent of First Nations reported little to noknowledge of the provincial colorectal cancer screeningprogram and FOBTs, and 67 percent had little to noawareness of general colorectal screening methods.115

In Saskatchewan, efforts have been made to expand themail out of screening kits and create partnerships with First

Nations communities. The Screening Program for Colorectalcancer has worked to increase First Nations’ awareness ofand participation in colorectal cancer screening.

Other Screening

Most cancers do not have organized screening programsand some cancers, including lung cancer and ovariancancer, do not yet have a reliable test for earlydetection.116,117 Routine screening of some cancers,including prostate cancer, is not recommended due to thepotential risks associated with screening. For prostatecancer, screening is usually done informally through adigital rectal exam or a prostate specific antigen (PSA)test.118 In 2008/10, about 23 percent of First Nations malesaged 18 years or older had had a rectal exam or a PSA test;

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Previous PapTest

RHS 2002/03(18+ years)

RHS 2008/10(18+ years)

< 1 year ago 48.2 48.9

1 – 3 years ago 27.4 25.1

> 3 years ago 13.8 16.3

Never 10.6 9.7

Screening Program for Colorectal Cancer

Organized by the Saskatchewan Cancer Agency (SCA), theScreening Program for Colorectal Cancer has been madeavailable to northern First Nations populations, and hasbeen modified to meet their needs. The program usesthe Fecal Immunochemical Test (FIT), a type of FOBT, toscreen healthy populations between the ages of 50 and74 for colorectal cancers. The SCA created strongpartnerships with the three Health Regions in NorthernSaskatchewan, which included the mail out of FIT kits inaddition to the coordination of community champions tomake home visits to encourage eligible clients tocomplete the simple screening test. These championsincluded nurses and outreach workers working in FirstNations communities. The Program is currently workingto develop a video featuring champions and survivors aswell as a “how to” video for completing the FIT test.Telehealth and eHealth webinars, as well asadvertisements in a northern newspaper and local radiostations, have been used to spread the message andreach areas of the remote north. Reviews of the programhave emphasized the importance of consulting with FirstNations communities to see what works at thecommunity level. First Nations living on and off reserve inSaskatchewan have been able to benefit from theScreening Program for Colorectal Cancer.

the frequency of this testing increased as First Nations mengot older.119

In general, participation in specific testing and screening byFirst Nations adults increased with age. In addition, FirstNations females are more likely to undergo screeningcompared to males; females may be more health conscious,and therefore more likely to seek out preventionscreening.120

Screening Challenges

There are many interconnected reasons that contribute towhy First Nations people tend to participate less inscreening programs. Although First Nations cultures andcommunities are diverse, and therefore these reasons mayvary across the country, some general themes haveemerged. Barriers to accessing cancer screening servicesinclude personal fears and beliefs, geographic isolation, andhealth system capacities.

Personal Fears and Beliefs

Past experiences with the health system have a lastingeffect on the decision to participate in screening programs.Poor experiences with cancer in many First Nationscommunities may manifest the belief that a cancerdiagnosis represents a death sentence. For some, ratherthan motivating them to seek help earlier, this fear ofcancer acts as a deterrent to pursuing preventativeprocedures, such as screening.121

Many First Nations people have also expressed that existingscreening facilities and programs are not culturally safeenvironments. Women in particular have communicatedthat in many cases, sensitive women’s health issues are notproperly addressed, as screening environments generally donot foster confidentiality and cultural safety.122 Modesty orembarrassment about exposing their bodies may preventwomen from pursuing screening examinations that theymay perceive as intrusive.123 In addition, discomfort withmale physicians is a significant barrier for many FirstNations women.124 For First Nations men, discomfort withroutine screening exams, such as rectal exams, maycontribute to their tendency to access screening servicesless than women.125

First Nations people in their 50s and 60s who are within theage range for screening, living with past childhoodexperiences of sexual, physical and psychological abuse thatmay have led to distrust of health care professionalsperforming screening exams. In particular, residentialschool experiences make older people reluctant to undergoscreening procedures and interact with care providers thatthey do not know and trust.126

Trusting relationships and culturally safe environments canwork to encourage First Nations people to participate inscreening programs and contribute to more positiveexperiences. Frontline health staff specifically designated tosupport the unique needs of First Nations, such as a TribalCouncil Nurse Practitioner, can help to increase awarenessof the importance of screening, while being sensitive tofears and beliefs.

Due to the lack of available cancer education,misperceptions about the purpose of screening programsexist in some First Nations communities. Some believecancer screening to be a diagnostic test for cancer when itis certainly present, rather than a system of early detection

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Eleanor Carriere’s Cancer Pathway...Screening “My cancer ordeal started in 2007. Well at age of 49, Istarted taking those mammogram tests, there were themobile ones that came. I was working at Nelson House atthe time, I used to travel from Thompson to Nelson Housewhich is an hour away and these mobile units would comeand they do the mammograms. So I signed up. In 2007, Ifelt okay and normal and then one day like I was layingdown and then my partner Herman was reaching over forsomething and he just grabbed my breast and squeezed itand I just screamed out in pain and I grabbed my breastbecause the pain was just vibrating. When I pressed on mybreast to try ease the pain I felt a lump there...and I said‘Oh, my God, Herman I got a lump’. So anyway, I forgotabout it the next day, and working with children and afamily you’re so busy that I completely forgot about it. I hada mammogram in August and received a letter from the Cancer Care Breast Clinic in September and it said that I had an appointment for a mammogram and it made an appointment for Winnipeg, that’s all it said. Ithought, ‘What, I already had a mammogram in August,why are they asking me to go for a mammogram’, and I justthrew that envelope in my desk and forgot about it.”

for people who may not have cancer.127 Particularly in smalltight-knit communities, misperceptions spread easily andare difficult to dispel, especially when reliable sources ofcancer information are lacking.128 Multiple organizations,

including Alberta Health Services, are working to encourageFirst Nations to access cancer screening programs byimproving the availability of culturally relevant educationalresources.

Geographic Isolation

Awareness alone does not ensure that First Nations peoplewill participate in cancer screening; for many, significantgeographic barriers impede their access to availableprograms. Although some rural and remote communitieshave good access to cancer screening, access is notconsistent or available for all communities. According to a

recent e-survey of health care providers working in FirstNations communities across the country, less than 50percent (47%) had screening and early detection programsin their communities. In some cases, isolated communitieshave coordinated organized screening trips to overcomethis gap, by flying in groups of women to a site wherescreening takes place on a two-year cycle.129 However this isnot always possible, as many communities have little to noresources available to operate cancer programming.130 131

More than half of all Aboriginal people in Canada live inrural, remote and northern communities; of status FirstNations people, 45 percent live in rural areas and almost 21percent live in remote areas.132 133 For these individuals,accessing cancer screening may be difficult due to travelburdens. Many First Nations have expressed that the Non-Insured Health Benefits program, which offers coverage for

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Screening for Life

Screening for Life is an initiative of Alberta HealthServices to increase awareness, and promote screeningand prevention of colorectal, cervical and breast cancers.Educational resources were developed in partnershipwith Health Canada’s First Nations Inuit Health branchand other leaders in Aboriginal health, to provideculturally appropriate information on cancer screening toAboriginals throughout Alberta. Toolkits, which focusedon interactive and visual learning components, weredesigned and delivered to First Nations communities tohelp increase cancer knowledge. Toolkits includedresources, such as pamphlets, PowerPoint presentations,cancer journey stories, and myths and facts sheets, thatare sensitive to the cultural realities of First Nationscommunities. Most of the materials in the kits wereupdated in 2010 to reflect the feedback from FirstNations. Toolkits are accessible to those in rural, remoteand isolated communities, to help overcome barriers toaccessing cancer education. In addition, workshops wereheld to facilitate inter-community and inter-organizationnetworking. To date, the Screening for Life program hasbeen effective in increasing First Nations’ knowledge ofcolorectal, cervical and breast cancers risk factors,prevention and screening.

Tribal Council Nurse Practitioner

The File Hills Qu’Appelle Tribal Council hired a nursepractitioner at the All Nations’ Healing Hospital toprovide outreach to the seven rural communities thatbelong to the Tribal Council. The communities hadrecognized that competing priorities for women, and theneed to leave the community to access care, wereresulting in an under-screened population. The NursePractitioner was hired to provide Pap test screening, toencourage breast screening for eligible women, and toprovide education regarding colorectal screening. Inaddition, the NP provides a holistic wellness approach, bycompleting health histories and physical examinations.Care is provided to women by women, and therelationships that have been established during healthappointments have helped to build trust and decreasefear of screening. Reviews have indicated that women aresatisfied with this service and that it is meeting theirneeds. To date, it appears that the role of the NP hasbeen successful in increasing participation in cancerscreening and promoting women’s health. Networks withthe Saskatchewan Cancer Agency and local doctors in thecommunities have helped to support themultidisciplinary nature of this role.

medical transportation for status First Nations, is focusedon treatment rather than prevention. Qualitative feedbackhas suggested that coverage of costs related to screening isoften inconsistent, which may prevent groups of individualsfrom accessing available programs.

In addition to costs, the time consuming nature of travelmay act as a barrier for some First Nations people. Theirdesire to access screening programs may be overshadowedby other personal and community responsibilities, such asprimary child care or an inability to get time off work.134

Day-to-day priorities may take precedence over the pursuit

of prevention services, including screening, especially forthose that have to travel significant distances.

Multiple jurisdictions are working to bring screeningservices closer to home for First Nations through outreachprograms, such as mobile screening. Mobile breastscreening in particular, has been successful in improvingFirst Nations’ access to screening programs in rural andremote communities. Mobile breast screening is highlightedin the “Promising Practice Profile” of this section.

In addition, some initiatives are working to increase thenumber of health care professionals providing screeningservices in northern communities, to help reduce the needfor travel. In Northern British Columbia, the ReproductiveHealth Screening Project has collaborated with First Nationsto improve their access to screening services and resources.

Health System Capacities

Shortages of health care providers and high staff turnoverrates create challenges for First Nations people as theyattempt to access cancer screening. With the limitedavailability of care providers in some First Nationscommunities, doctors may be overwhelmed with theimmediate needs of clients and have little time to promoteor perform cancer screening.135 Especially in provinceswhere doctors are the gate-keepers to screening servicesfor certain cancers, including prostate and colorectal, staffshortages are problematic.

High staff turnover rates have been well documented as anissue for rural and remote First Nations communities,especially in the north.136 In terms of cancer screening,qualitative feedback suggests that it is difficult to getprograms running when communities are dependent onshort-term or rotating staff.137 Even amongst the FirstNations communities with good access to cancer screeningprograms, fragmentation of services between jurisdictionschallenges the success of these programs.138 The flow ofinformation between provincial screening programs andlocal health care providers in First Nations communities issometimes difficult, given the rapid turnover of communitystaff. Communication of screening results may not occur ina timely manner, and as a result, the identification of theneed for further follow-up testing may be delayed.

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Reproductive Health Screening Project

The Reproductive Health Screening Project (RHSP) wasdeveloped to increase women’s access to screening inNorthern British Columbia by increasing the number ofhealth care providers performing Pap tests, clinical breastexams and breast health education, and by reducingbarriers to screening. The RHSP was developed through apartnership of Northern Health, BC Women’s Hospitaland Health Centre, and the Provincial Health ServicesAuthority. With Aboriginal peoples representing about 15per cent of the population in Northern BC, RHSPcoordinators recognized the importance of developingpartnerships with First Nations to help improve theiraccess to the program. In total, 44 nurses have beentrained, and 6 of these were First Nations nurses whoreceived support from their band councils to attendtraining sessions. Training provides nurses with educationon reproductive health screening, and then supportsthem as they provide screening services to women intheir home communities. The use of women-centre careis an important element of RHSP, and helps to addresssome of the barriers to screening identified by FirstNations. A 2006 review of RHSP concluded that it wassuccessful in reaching under-screened women, such asFirst Nations. A workshop was developed and presentedwith women Elders, who integrated spiritual and culturalvalues into the medical material. The project has beenable to address First Nations women’s need for positiverelationships with health care providers that understandtheir cultural realities.

With the heavy workloads of frontline health staff in FirstNations communities, cancer screening is often not apriority.139 Some regional initiatives have attempted toreduce the burden on these care providers by increasingthe number of individuals trained to deliver cancereducation. Initiatives such as the Screening Saves LivesProgram are working to overcome health system barriers byproviding training to community members to help raiseawareness about cancer screening.

Promising Practice Profile: Mobile Breast Screening

Outreach strategies are currently in place across thecountry to improve the participation of certain populations,including First Nations, in screening programs. Regional andmobile screening facilities are now in place in mostprovinces and territories to help overcome issues of access,especially for remote populations.

Mobile breast screening, in particular, is an outreachprogram that has demonstrated the positive effects ofcollaboration between provincial cancer agencies, healthorganizations, and First Nations. Most provinces havemobile breast screening clinics that travel to remotecommunities on a regular basis, from twice a year, to onceevery two years. Quebec, in addition, has a plane thatcarries mammography equipment and technicians to fly-incommunities in the province’s northern regions. Women inthe Yukon can be screened at the Whitehorse GeneralHospital. In the Northwest Territories, mobile units are notused, however screening facilities are available regionally.Nunavut does not have any mammography facilities, andwomen must usually travel out of the territory to bescreened.140

Although screening outreach programs may not reach allFirst Nations communities, mobile breast screening hashelped to increase screening participation rates in someregions. In addition, some jurisdictions have worked toadapt their screening programs to meet the unique needsof First Nations and improve the cultural safety of screeningenvironments. Two examples of this are the NorthwesternOntario Breast Screening Mobile Program, and the FirstNations BreastCheck program in Manitoba.

The Northwestern Ontario Breast Screening MobileProgram, an initiative of Cancer Care Ontario, is dedicatedto providing high quality breast screening services foreligible women aged 50 to 74 living in rural and remotecommunities. The mobile unit travels to over 55 locations,visits more than 30 communities, and is available in theevenings and on weekends to accommodate schedules andfurther increase accessibility. Recently the program startedto collaborate with First Nations, which has enabled it toprovide a culturally safe and locally relevant screeningenvironment for First Nations women in or near their owncommunity.

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Screening Saves Lives Program

Launched by the Canadian Cancer Society in 2006, thisprogram operates in communities in North-easternOntario to educate men and women of screening eligibleage about the importance of breast, cervical andcolorectal cancer screening, and encourage them toarrange screening appointments. The program has beenrunning in the seven First Nations communities onManitoulin Island since 2007. Program coordinators, whoare known and trusted by the communities, recruit andtrain volunteers to engage their families, friends,colleagues and neighbours in conversations about cancerscreening. Work has been done to identify the barriersthat prevent First Nations women from participating inscreening, which helps the Society take action to makescreening more accessible. Training provided tovolunteers is culturally appropriate and aims to clarifymisperceptions about cancer screening tests and provideinformation on where screening services are available.The program has been very well received in thecommunities - over 2,500 contacts have been madebetween education staff, volunteers and their peers onManitoulin Island since the program began.

Travel to attend screening services is coordinated forwomen living in remote communities that are inaccessibleby road.141 The program collects and shares with FirstNations screening participation rates, retention rates andcancer detection rates to demonstrate positive outcomes.Screening appointments have also been coupled withmessages about screening for other cancers, as well aschronic disease prevention education, to help increasecommunity awareness.

CancerCare Manitoba’s(CCMB) BreastCheckprogram operates mobilebreast screening sitesacross Manitoba in over90 locations, to helpincrease screeningparticipation rates acrossthe province.142 CCMB hasalso been working withthe First Nationcommunities of Sagkeengand the Pine Fallscommunity to developculturally responsivescreening resources.143

Mobile breast screeningbuses visit both communities to provide culturally safe,locally meaningful care. A breast cancer survivor from theSagkeeng community was hired as a liaison to motivateother women in the community to have a mammogram.She also advised CCMB on how to best reach under-screened populations, which contributed to thedevelopment of culturally relevant educational resources,

such as posters and pamphlets, on breast screening andearly detection.

These resources have been welcomed by other First Nationscommunities, who have requested copies of the materialsto encourage their own communities to access breastscreening services.144 In addition, the pamphlet is nowbeing used as an invitation to women in First Nationscommunities throughout Manitoba to participate in theBreastCheck program.145

Diagnosing Cancer

Most cancer registries do not identify the ethnicity ofpatients, therefore information about cancer diagnoses forFirst Nations is lacking. Some jurisdictions have worked tofill in this information gap through regional studies. Forexample, a recent study of Ontario women diagnosed withcancer between 1995 and 2004 discovered that 66 percentof First Nations women were diagnosed at a later stage,compared with 56 percent of non-First Nations women.These late-stage diagnoses were tied to cancer screening,as First Nations women who were not screened were fivetimes more likely to detect breast cancer at a later stage.146

Evidence from other regions suggests that in general,proportionately more First Nations women than non-FirstNations women present with breast cancer at an advancedstage.147

Qualitative research in regions across Canada suggests that,in general, First Nations tend to present with later stagecancers.148 Barriers to accessing health services, includinggeographic location and a lack of available primary care,impact the timeliness of cancer diagnoses for First Nations.For many, especially those living in rural and remote areas,diagnostic tests are not available at local health centres, soindividuals are often required to travel outside of theircommunity.149 Similar to cancer screening, the costs andtime associated with travel may contribute to delays inaccessing diagnostic tests.

Health system challenges also have implications for cancerdiagnoses. For those individuals that are able to access ascreening program, and whose test results show abnormalresults, referrals are made through their health servicesprovider to a specialist for further diagnostic tests.

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Jacqueline’s StoryJacqueline lost her son to cancer. She feels her son’sdiagnosis was delayed because of a lack of resources inher community. Her community has a health centreand a nurse, but when her son became ill she had to goto a town more than an hour away to see a doctor.They did not know the type of cancer at the time ofthe diagnosis. The diagnosis was slow.

(Source: AFN interviews conducted in 2007)

Coordination and communication between patients, familydoctors and specialists can be problematic for personswithout a regular health service provider or for those whohave accessed screening services directly without involvingtheir regular provider.150 This may create delays in referralprocesses or a lack of follow-up between the relevant careproviders once a cancer diagnosis is made. Health systemshortages mean that frontline staff are typically focused onacute care needs, and for those unable to access screening,certain symptoms may go untreated for extended periods

of time, which maydelay a diagnosis.151

In a recent Nova Scotiastudy, First Nationsidentified some of thechallenges theyencountered in theprocess of receiving acancer diagnosis.152 Insome cases, peoplehad had very littleexperience with

doctors and were often fearful of the procedures involvedin diagnosing cancer. For some, the fear of cancersometimes acted as a deterrent from seeking medicaladvice, despite the presence of symptoms. Many expressedthat the information provided at the time of diagnosis wasusually written material, which was not always easy tounderstand, especially for those who did not speak English.Qualitative feedback suggests that many of these issues arerelevant for First Nations across Canada.

Cultural sensitivity is an important factor in delivering acancer diagnosis, as some First Nations cultures havedistinct beliefs in relation to talking about disease andillness. For some, direct references to cancer are thought tobring death closer and promote fear and pain, thereforemore indirect communication processes are preferred.153 Inaddition, health for most First Nations is focused onachieving balance and wellness within all domains of thehuman life.154 However according to some First Nations,health professionals tend to focus on physical diagnosis andtreatment and often overlook the emotional aspects ofcancer.155 Improving the cultural competency of health careproviders can help to ensure that cancer diagnoses areculturally sensitive to First Nations’ beliefs.

4.2 Living with Cancer: Treatment

Cancer treatment options are diverse, based on the typeand stage of cancer, as well as personal factors unique toeach patient, such as their health status prior to diagnosisand their family health history. Treatment to help overcomecancer, extend life, or improve the quality of life mayinclude surgery, cancer drugs, chemotherapy, and/orradiation therapy.

The complexity of the cancer care system and treatmentoptions may create challenges for some Canadians livingwith cancer. For First Nations, numerous factors includinggeographic isolation, communication barriers, and a limitedavailability of culturally appropriate care, contribute tofrustrations throughout their cancer treatment. Enteringthe cancer care system often acts as an initial challenge, asthere exists a general lack of awareness of cancer treatmentoptions in many First Nations communities.156

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“Too many patients aregiven or repeatedlytreated for othersymptoms without adiagnosis. By the timethey are diagnosed theyhave end-stage cancer.”

Eleanor Carriere’s Cancer Pathway...Diagnosis “I received a call from the Nelson House Nursing Stationtelling me that there was an anomaly in my mammogramand there was an anomaly on my breast and I had to go tothe Breast Clinic right away. They gave me this test where itwas just like a needle but it’s not, it has a little clamp at theend. So he injected that into my breast and took a sample.Then the nurse came and said you have cancer and I said‘no I don’t, because you never sent that sample to the labso how could you tell me I have cancer’. She said becausethe doctor by just looking at it can tell. I was devastatedbecause they said I had breast cancer and I wasoverwhelmed with this and I couldn’t believe this and I wascrying. I phoned my sister-in-law to let her know, but I stilldidn’t believe it. I went back home to Thompson fromWinnipeg and I wouldn’t believe that I had cancer and I saidI don’t know why they are telling me I have cancer whenthey didn’t even send that sample to the lab. So anyway,they phoned and they did confirm that I had cancer. Theymade an appointment for me to go to the hospital on May28th. I was going to have a lumpectomy at the Hospital.”

Receiving a cancer diagnosis can be scary and the treatmentprocess may be confusing, if the relevant and appropriateinformation is not available for patients. Providingemotional and informational support for First Nationsthroughout their cancer journey can help to improvepatient experiences as they interact with the cancer caresystem.

Treatment Information

Effective doctor-patient communication is particularlycrucial in cancer care, where miscommunication can lead tofeelings of anxiety and confusion, and procedures may becarried out without fully informed consent.157 However forthe approximately one-third of First Nations adults that usean Aboriginal language most often in their daily lives,language barriers can often contribute tomisunderstandings during cancer care.158 Especially wheninterpreters and translators are not available to help explaincomplex procedures, First Nations people may not be ableto make informed decisions.

Trust also plays an important role in influencingcommunication between physicians and First Nationsduring cancer treatment.159 Qualitative feedback suggeststhat some First Nations do not feel comfortable askingquestions about their treatment options, due to a lack oftrust in their relationships with care providers.160 Pastnegative experiences with the health system, a generaldistrust of Western medicine and issues of culturalcompetency may prevent First Nations from interactingeffectively with their care providers.161

In a recent Nova Scotia study, First Nations described theirexperiences in accessing cancer care and their interactionswith care providers throughout their cancer journeys.162 Thedegree to which participants felt engaged in treatmentdecisions varied - some reported that they were notconsulted at all about treatment options, while others weretold that there were no alternative treatments except theone offered by their physician. Many did not know whatquestions to ask their doctors, so they were not sure if theyhad received accurate or useful information, and feltunprepared for treatment procedures and subsequent sideeffects. A lack or limited amount of information left manypeople feeling helpless and out of control, thus amplifyingtheir anxiety, which made it more difficult to prepare fortreatment.

Resources designed to improve the effectiveness ofcommunication during treatment consultations have beendeveloped in regions across Canada. In Thunder Bay, acancer word book has been developed to help Ojibwe-speaking First Nations better understand their cancer andmake fully informed decisions about how to treat it.

Traditional Healing and Culturally AppropriateCare

While the Western medical model tends to focus on theabsence of disease, the Traditional understanding of healthand wellness considers the holistic balance of mind, bodyand spirit.163 For many First Nations, acknowledging the roleof mind, spirit and emotion is essential when treating anillness.164 In some studies, First Nations have expressed thatthe emotional, social and spiritual aspects of cancertreatment are often neglected by the cancer care system.165

Qualitative feedback has centered around the importance

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Eleanor Carriere’s Cancer Pathway...Teatment After arriving at the hospital, Eleanor is prepared to beginher cancer treatment.

“I did have a hard time because I have small veins and theywere just poking me so finally they had to put in....I don’tknow what it was, but it was plastic so that they could putin an I.V. They put that in my arm and I had the operation (alumpectomy). So I was there for two weeks and they tooksome samples from my lymph nodes and they found twothat had cancer. They took about 42 out, the rest wereokay. I was on morphine and Tylenol #3 because it waspainful after that operation. So I was at the hospital and it’sso far away so people couldn’t come to visit me. My sisterLyna came to visit me and my niece, but people from thenorth, they said, “Oh, it’s too far, I wanted to go visit youbut you’re so far.” I was so lonely, I was there about 3weeks. My lymph-nodes were still draining from under myarmpit into this container that was like a little rubberballoon and it had a little cap at the top.”

of having health professionals approach cancer treatmentfrom a holistic perspective.166

There is a widespread desire amongst most Aboriginalpeople to access traditional healing methods.167 In fact, inthe 2008/10 Regional Health Survey, approximately 43percent of First Nations with a chronic health conditionreported having visited a traditional healer. In addition,more than one-third of First Nations adults living in FirstNations communities reported using traditional medicine.168

The use of traditional health practices during cancer carevaries amongst First Nations. Some prefer traditionalmedicines rather than physician-prescribed treatment; theystop the latter, relying instead on traditional methods ofhealing. Others seek to blend both traditional and westernmedical practices.169 However care facilities do not alwaysprovide this as an option, or do not have standardized

processes forintegrating traditionaland western care.170 Asa result, First Nationscancer care may not beculturally relevant,which may contribute to poorer patient experiences.

A number of factors, including a lack of trust and culturalcompetency in doctor-patient relationships, contribute tothe fact that some First Nations choose not to tell theirphysicians about their use of traditional medicines.171

In addition, physicians may not be aware of the need toinquire about traditional therapies, since they are typicallyaccessed outside of the care facility. Concern has arisenamong both community members and cancer serviceproviders that this lack of communication about the use oftraditional remedies could lead to problems such asnegative drug interactions.172 Improving the availability oftraditional treatment and working to overcome barriers toopen communication could help physicians and FirstNations patients work together to ensure that their cancertreatment is tailored to meet their unique needs.

While some careproviders haveexpressed an interestin increased opennessto traditionalAboriginal healingprocesses duringcancer treatment,others have beenresistant due to a lackof understanding oftraditional methods.173

Health professionalsare not always awareof the importance oftradition and cultureto First Nations health,which may lead toissues of culturalcompetency in theprovision of cancercare. For example,mixing male and

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Thunder Bay Regional Health Sciences Cancer CentreWord Book

The Cancer Word Book aims to improve cross-culturalcommunication between health care providers, patientsand family members. The Regional Cancer Care’sAboriginal Cancer Committee at Thunder Bay RegionalHealth Sciences Cancer Centre developed this tool fortranslators and those who assist health care providers tocommunicate with Aboriginal people. The Word Book is aconcise dictionary of over 150 cancer terms, translatedfrom English to Ojibwe, that is designed to assist patientnavigators, cultural interpreters and translators whosupport Aboriginal people and their families who arediagnosed with cancer. A guide to reading, writing andspeaking the Ojibwe language is also included, to assisthealth care providers in communicating with Aboriginalpatients and families when translation is not available.The Aboriginal Cancer Committee has been committed toincreasing awareness and education about cancer carefor Aboriginals in Ontario, through the development ofculturally relevant resources, such as the Word Book.Produced with funding from the Northern CancerResearch Foundation, this resource has helped with thecommunication of highly technical cancer terms duringtreatment processes for Aboriginal patients in Ontario.

“There is a huge needfor culturalunderstanding andlearning. I have heardcases where the patienthas said ‘I should havecome sooner but mytraditional healerwouldn’t let me’. Ibelieve there is amisunderstandingamong healthprofessionals of whattraditional medicine is.”

“If you just focus on thedisease, you miss thewhole person.”

female Aboriginal patients in hospital rooms, having maledoctors attend female patients, and directly discussingdisease and death may be culturally inappropriate andcause more anxiety during cancer treatment.174 175

Improving cultural sensitivity during cancer care allows thehealth system to be more responsive to First Nations needsand can help to improve patient experiences.176

First Nations have expressed the desire for medical andcancer care that integrates traditional services, and many

jurisdictions are working to respond to this identified gap.In Saskatchewan, the Eagle Moon Health Office buildsrelationships and facilitates connections between FirstNations communities and western medical providers.

Navigating the System

Timely access to informational and emotional supportduring treatment is crucial in helping patients navigate thecancer care system.177 However qualitative feedbacksuggests that First Nations do not always have access toculturally relevant support, which may create challenges ontheir cancer care journey.178

For many First Nations patients, healing and treatmentinvolve interconnectedness with their family andcommunity.179 Therefore for those living in rural and remotecommunities, who must travel significant distances toaccess cancer care, it is very difficult to leave the supportnetwork of the family and community to face cancertreatment alone. Fears of leaving the community, lengthystays in unfamiliar cities during treatment, and feelings of

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The Eagle Moon Health Office

Located in Saskatchewan, the Eagle Moon Health Office(EMHO) is currently working to improve cancer servicedelivery for Aboriginal people by changing the approachtaken to service delivery and building respect andsupport for Traditional care models. The objective is tobring First Nations and Métis community members,Elders, and Knowledge Keepers together to determinehow services for Aboriginal people can be moreaccessible and delivered in a manner more aligned to aholistic understanding. As part of the Regina Qu’AppelleHealth Region, EMHO works with First Nation and Métiscommunities to support the availability of traditionalways of health and wellness. EMHO achieves this goal bybuilding relationships with these communities andconnecting them with health workers to collaborate andwork toward meeting the holistic health needs of thepopulation. In 2011, with funding from the CanadianBreast Cancer Foundation, the Saskatchewan CancerAgency and EMHO engaged in a two-year project tobridge First Nations medicine together with Westernmedicine to address cancer. Collaborative forums areworking to determine the type of tool that would bemost effective in providing culturally respective care.

Eleanor Carriere’s Cancer Pathway...Treatment Traveling alone throughout her treatment, back and forthbetween her community and the care centre, has become aburden for Eleanor.

“In Thompson they have a transportation patient unit,northern transportation. So you go in there and you tellthem you have an appointment, and they make thearrangements. But they tried to send me by bus, and I’d tellthem “no I can’t I have a letter that I have to go by planebecause of my weak immune system”. So they would putme on the plane and I’d arrive in Winnipeg, then I’d phonea number and would have to deal with the person that is onthe line from the medical services unit. I usually arrived onSunday, so there were weekend staff that were on and itseemed that they didn’t have the information that theyneeded for me. They would say “I have no information onyou, Thompson did not phone”, and Thompson would say“yes we did”, and they would say “no they didn’t, we haveno information on you, and which receiving home do youwant to go to or which boarding home?”. And I told themthat I couldn’t be put in a boarding home, I have a weakimmune system, and I have a letter here that states that Ineed to be put into a hotel. They would try to put me in aboarding home and I would argue with them so they finallyput me in a hotel. Every time that I came in for anappointment I’d have to fax them that letter.”

isolation while in hospitals or cancer centers maycomplicate the ability for some First Nations to navigate thecancer care system.

In some cases, such as for minors or for physically ormentally incapacitated individuals, medical coverage can beobtained for an escort to accompany the patient as theytravel to access health services.180 However in somecommunities, First Nations have expressed difficulty infinding consistent support for the escorts, especially inrelation to transportation costs. In the absence of familymembers to advocate for their needs, it may be difficult forFirst Nations to overcome system barriers during theircancer treatment. When the proper support is notavailable, or relevant to the unique needs of First Nations, itbecomes more difficult to access appropriate cancertreatment. Ensuring that culturally relevant support isavailable, can help First Nations patients to overcome thesebarriers and effectively navigate the cancer care system.

In some regions, hospitals, cancer centers and First Nationshealth centers have hired patient navigators to fulfill thisneed. Patient navigators work to support First Nations andtheir families on their journey through the cancer caresystem, with a goal of enabling them to receive qualityculturally appropriate care. As described in this section’sPromising Practice Profile, patient navigation has beensuccessful in various jurisdictions across Canada.

Promising Practice Profile: Aboriginal PatientNavigation

Aboriginal patient navigators touch the human side ofcancer directly, reaching out to vulnerable patients andfamilies to assist and advocate on their behalf in a complexand confusing health care system. Navigators help to bridgethe divide between Western and traditional care by workingas liaisons between the cancer care system and FirstNations communities. Patient navigators also work topromote patient access to community services thatenhance continuity of care and efficient use of resources.181

Aboriginal patient navigation is a promising practice forenhancing First Nations access to culturally responsive care,and improving the coordination of treatment acrossjurisdictions. Aboriginal patient navigator projects in variousprovinces across Canada are currently working to improveFirst Nations’ experiences in the cancer care system.

In Ontario, the Aboriginal Patient Navigator (APN) Programat the Juravinski Cancer Centre has been recognized as aleading best practice.182 Guided by community consultationand an Aboriginal cancer care networking committee, thisprogram works to support the cancer care needs of FirstNations individuals and families throughout the patient’sjourney in the health continuum.

The Juravinski Cancer Centre serves over 1.4 millionresidents in the regions of Hamilton, Niagara and thesurrounding areas, which includes just under 40,000Aboriginals. After an initial pilot project in 2006, theNavigator role became a permanent full-time position atJuravinski in 2009, with funding from the Hamilton NiagaraHaldimand Brant Local Health Integration Networks.183

The Navigator is a staff member in the Supportive andPalliative Care Program at Juravinski Cancer Centre atHamilton Health Sciences. Navigation services may beaccessed by patients and families self-identifying as havingAboriginal ancestry, or who are part of an Aboriginal family,or who have Aboriginal cultural needs. The APN Programhas been successful in helping patients and their familiesunderstand what to expect during various aspects of thecancer journey.

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Jacqueline’s StoryWhen he was diagnosed with cancer, her son had toseek chemotherapy and radiation treatment inWinnipeg, an 8-hour drive away from home, for aperiod of six months. She and her husband had to rentan apartment for themselves and their other childrenand take on additional expenses. The quality of careher son received in Winnipeg was excellent. Howeverhe was lonely and often spoke about his community tothe nurses. Her son felt cut off from the support of hiscommunity and culture.

(Source: AFN interviews conducted in 2007)

Links to traditional Aboriginal cultural healing and supportgroups have helped to facilitate consultations,collaborations and cross-jurisdictional referrals for FirstNations engaged inthe APN Program.The Navigator alsosupports FirstNations in integratingtraditional healingpractices into theircancer treatments,by advocating fortheir cultural needs.

4.3 Home and Community Care

Home and community care refers to health related servicesthat enable people with disabilities, chronic or acuteillnesses, and the elderly, to receive the care they need intheir home communities.184 For cancer patients, havingaccess to this type of care can help with the transition ofreturning home from a cancer care facility after receivingtreatment.

For First Nations, the process of returning home aftercancer treatment is more complex, due to the multitude ofjurisdictions involved in First Nations cancer care. Multiplefactors, including gaps in communication and a lack ofavailable resources, have contributed to challenges in thedelivery of health services to First Nations who have beendischarged from cancer care facilities. Some First Nationshave found that upon returning home, their care needs areunable to be met in their community.185

When cancer treatment is unsuccessful, home andcommunity care services are also able to support thepalliative care needs of patients who wish to be at home,surrounded by family and friends. However in many FirstNations communities, there is a reported lack or limitedavailability of palliative care, despite the desire of manyFirst Nations to have access to these services.186

Cancer patients that have undergone extensive treatmentmay feel apprehensive about leaving the care facility andmoving to the next stage of the cancer journey. For First

Nations, having the ability to access relevant home andcommunity care services can help to ensure that cancerpatients are supported throughout this transition.

Leaving the Care Facility

Gaps in communication between care providers presentparticular challenges for the follow-up care of First Nationswho have returned to their community. Qualitativefeedback suggests that in some regions, there is a limitedflow of information between First Nations communities and

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Eleanor Carriere’s Cancer Pathway...Discharge“After my operation at the hospital, one thing that reallyconcerned me was why the doctor let me out so early. Thenurse was concerned and said “I never in my experiencehave witnessed a doctor discharging a patient with thattube still under their armpit”. The nurse was sooverwhelmed that the doctor was actually discharging mewith that thing still stuck in my armpit. He didn’t even tellme to go back or anything and he just discharged me likethat. And I think it had to do with the hospital bed, thatthey needed it for someone else. So I just pinned it on myshirt and I went to my Mother’s. That thing was bugging meand he told me I had to drain it all the time. So I wasdraining it, it was two nights later, and then my arm swelledup so I phoned the doctor and he said, “Oh just take yourTylenol”, so I took the Tylenol and my sister Lyna said, “Ifyour arm is still swollen up tomorrow I’m going to take youback to the hospital”. It was still swelled up so I went backto the hospital and they said that I had an infection. Sowhen I got to the hospital the doctor who operated on mewasn’t there, this doctor from the emergency started mewith that saline solution and he said add penicillin in thereand I said “No, I’m allergic to Penicillin” and he said try itand the nurse put that thing in there and I said “I’m allergicto Penicillin” but they didn’t listen and I broke out. I hadthat Steven Johnson Syndrome and my skin was all red andpeeled off. I was in the hospital longer because of that andmy doctor had to do a report to the Poison Control andthey came to see me because he had to report that doctorfor doing that. So I stayed in the hospital for three moreweeks because of that. I was very lonely. I think I shouldn’thave been let out with that tube stuck in my arm and Ididn’t feel good and I was discharged, I wasn’t ready!”

cancer care facilities. As a result, many First Nations whoreturn to their home communities do not have their careneeds communicated to local health staff because no suchprotocols exist.187 Moreover, cancer specialists and tertiaryhealth staff are often unaware of the service capacities andgaps in First Nations communities.188 In some cases,patients are sent back to the community from cancer carefacilities without further referrals and without a follow-upcare plan.189

In addition, the lack of identification of First Nations cancerpatients in health records complicates the communicationof discharge information and continuing care needs acrossjurisdictions; this jurisdictional barrier is a particularconcern for First Nations required to travel outside theirhome province to access cancer care.

Difficulties in accessing necessary medications andshortages of resources in First Nations communities alsocontribute to challenges for cancer patients who havereturned to their community. In some cases, medicationsmay not be available in the community or health staff maynot be trained to administer them. Staff shortages and thelower priority of cancer in some communities may alsomean that local care providers are unable to provideinformational support for cancer patients in the next stageof their journey. They might not have answers to theirquestions about follow-up care or the side effects of cancertreatment, and communication barriers may make itdifficult to consult with cancer specialists outside thecommunity.190

Both First Nations communities and cancer care providershave identified the need to support cancer patients afterthey have been discharged from the care facility. In somejurisdictions, relationships and networks have beenestablished between primary and tertiary care providers tohelp improve the communication of patient informationand care needs to First Nations communities. At WhitehorseGeneral Hospital, a Community Liaison was hired tocoordinate and plan the discharge process for First Nationscancer patients and act as a bridge between the hospitaland local First Nations communities.

Promising Practice Profile: Hospital DischargePlanning

Discharge planning is a process used to decide what apatient needs for a smooth transition from one level of careto another. This discussion often includes the physicalcondition of the patient, details of the types of carerequired, information on medications and diet, and possiblereferrals to other services. Effective discharge planning hasthe potential to decrease the likelihood of readmission tothe hospital, assist in recovery, and adequately preparefamily members and local care givers to support a patient inthe next stage of their cancer journey.191

Hospitals across Canada have hired discharge planners tosupport patients in their transition out of the hospital’scare. In Nova Scotia, the Cape Breton Home-Care DischargePlanning program has been identified as a promisingpractice in providing support for discharged First Nationspatients who are returning to their reserve communities.The Discharge Planning program began in 2002 as a pilotproject in the Cape Breton Health District, home to 60percent of the province’s reserve population, and has sincebecome normal practice. The potential has also beenidentified to expand the program to the entire province.

The Discharge Planning model was designed to address anidentified gap in Nova Scotia - there was no protocol toensure that the care needs of patients returning to thereserve upon discharge from the hospital werecommunicated to Band-employed nursing staff. Due to gapsbetween federal and provincial jurisdictions, coordinatedcare plans for First Nations living on Reserve were eithernot developed or could have been better informed.

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Jacqueline’s StoryAfter he was diagnosed with cancer, Jacqueline’s sonhad to seek treatment in Winnipeg. When he returnedto the community, the nursing home would not allowhim to stay or administer his medications due toliability fears. Instead the nurses showed her how toadminister the medication to her son, herself.

(Source: AFN interviews conducted in 2007)

To date, the Discharge Planning program has beensuccessful in filling this gap in the provision of care.

When First Nations patients are ready to be discharged,hospital-based care coordinators complete a 2-pagefunctional assessment about mobility and other key issuesaround a client’s capacity to function out of the hospitalsetting. This identifies enough information about the clientto activate short-term service in the home community untilthe community-based care coordinator conducts a homeassessment to develop a home care plan. Once the client isdischarged from the hospital, the case management andservices are provided by the First Nation community.

Coordinated discharge andcare planning in CapeBreton has worked toensure that First Nationsare continually supportedthroughout their careprocess. The DischargePlanning model has alsohelped to reduceunnecessarily long waits inthe hospital, avoidablereadmissions andcomplication rates. Inaddition, the role of the First Nations interpreter in theprogram has helped to improve communication during thedischarge planning process; the interpreter providescommunity supports with information about First Nationsresidents in the hospital and gives home care coordinatorsnotice of when the client will be discharged.

Linkages with First Nations communities and healthorganizations helped to ensure that the design andimplementation of the program were supported by allpartners. In addition, the initial success of the program canbe partially attributed to the fact that it did not requiresignificant resources and it was able to be integrated intothe existing system smoothly. Effective communication,respect and goodwill, and strong support networks, havecontributed to the success of this program and created thepotential for province-wide expansion.

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Community Liaison Program, Whitehorse GeneralHospital

At the Whitehorse General Hospital (WGH), First Nationsprograms have been designed to provide culturallyappropriate care and support First Nations throughouttheir stay at the Hospital. The Community LiaisonProgram has helped to ensure that First Nations aresupported even after their care at WGH is complete, bymaintaining effective working relationships with FirstNations communities and care providers. The CommunityLiaison organizes and plans patients’ discharge from theHospital and prepares First Nations people to return totheir homes or communities. Collaboration withcommunity resources helps to ensure that the necessarycare will be available at local health centres. CommunityLiaisons work to coordinate a smooth transition fromhospital to community care for all First Nations patients.

Map of Cape Breton Health District

Palliative Care

Palliative care is a special type of health care provided topatients with life-threatening cancer; it focuses on pain andsymptom management and provides other non-medicalservices to support the emotional, spiritual and culturalneeds of the patient and their family.192

Qualitative feedback suggests that the majority of FirstNations would prefer to receive palliative care in theircommunity and pass away at home, surrounded by familyand friends. In fact, in a recent study in NorthwesternBritish Columbia, roughly two-thirds (62.5 percent) of FirstNations participants indicated that their home communitywas a preferred place to pass on.193 However in most FirstNations communities, there is no formal palliative careprogramming to be able to support these individuals.

Many communities have expressed that they have little tono available resources to develop palliation programs andtrain local First Nations health staff to provide theseservices to patients in their homes.194 As a result, FirstNations must turn to formal palliative programs located atcare facilities in large urban centers, or at smaller localhospitals in the nearby area. Some First Nations, especiallythose from rural and remote communities, have expressedthat receiving palliative care outside of the community canbe an isolating and lonely experience.195 Significant traveldistances may prevent some family members and friendsfrom making the trip out to the care facility and as a result,the patient may not be able to receive the emotionalsupport they need in their final days.

When receiving care at a hospital, First Nations peopleusually have access to the same palliative services as otherCanadians; however these services are not typicallydesigned to accommodate cultural differences or create anatmosphere of cultural safety.196 Many First Nations havespecific palliative care needs, due to their unique traditionsand rituals around death and the process of dying. Forexample, some patients have expressed that not speakingdirectly about death, having access to traditional medicinesand healers, and being surrounded by a large group ofextended family and friends are important to the dyingprocess.197

However hospital policies sometimes pose as barriers totraditional practices and care providers are not always ableto accommodate the needs of First Nations patients.198 Busyworkloads, a lack of cultural sensitivity training, andcommunication barriers contribute to the absence ofculturally appropriate palliative care in some hospitals andcare facilities. Although health staff in some regions areshowing a willingness to learn and understand First Nationscultures, and some are even engaging in cultural sensitivitytraining, there is still inconsistency in the respect shown forFirst Nations customs.199

In some regions, First Nations may be able to receivepalliative care closer to home, if services are available at ahospital or care centre located in a closer proximity to theircommunity. However these services are not always able tofully meet the needs of First Nations patients. For exampleat some local centers, health service providers haveexpressed that there is a lack of funding for twenty-fourhour palliative care.200 In most cases, their schedule is nineto five, which is inadequate for providing palliative care.201

In addition, with the constant turnover of care providersand staff shortages in some areas, ensuring that palliativecare is seamless and culturally appropriate may be achallenge.

The Aboriginalpopulation of WesternAustralia has identifiedsimilar challenges toaccessing palliativecare to thoseexperienced by FirstNations in Canada. TheRural Palliative CareModel in WesternAustralia was recentlydeveloped to addresssome of these barriersand improve thecoordination ofculturally appropriatepalliative care toAboriginals living inrural areas; someelements of this modelmay be adaptable for

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“Cancer care is onething that is forgottenin our First Nationcommunities, there isno palliative caretraining, to allow us toprovide adequate carefor the terminally illcancer patients...if wehad more First Nationstrained in palliativecancer care, our peoplecould have their wishand remain in thecomfort of their ownhome until their time.”

the First Nations population in Canada.

Due to the existing gaps in First Nations palliative care,family members and First Nations communities have oftenstepped in to provide care for their loved ones. Some First

Nations patients havechosen to forgo theservices of formalpalliation programs athospitals or carecenters and insteadremain in the comfortof their home. In arecent study inNorthwestern BritishColumbia, over 80percent of FirstNations participantsexpressed that familymembers were theirpreferred providers ofpalliative care.202 Thisindicates that manyFirst Nations value theability to spend their

remaining time at home, where they may have betteraccess to traditional practices and family members whounderstand their needs.

However, without formal training, sufficient resources, andstandards for First Nations palliative care, providing thiskind of support may place a burden on the patient, theirfamily and the community. The required time commitmentis often overwhelming, and some families may feelunprepared to provide appropriate care and often fearmaking mistakes.203 The lack of available supports andresources may limit the ability of some families to supporttheir loved one’s desire to pass at home.

In response to these identified gaps, the Canadian HospicePalliative Care Association has developed a training manualfor support workers in First Nations communities thatinteract with palliative care patients. The manual works toenhance the capacity of these care providers to supportFirst Nations needs and provide culturally appropriate care.

4.4 Surviving Cancer

Many people who have been treated for cancer now live formany years after their cancer diagnosis.204 Howeverphysical, emotional, and financial challenges often persistafter cancer diagnosis and treatment; these challenges arewide ranging and may include practical issues related topersonal finances, psychological struggles, and the fear ofrecurrence. Throughout Canada, there is a growingrequirement to address the needs of patients and theirfamilies in the years after their treatment in the cancersystem ends.

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“The regional palliativecare nurse came to ourcommunity once in2010, but it was moreof a learning experiencefor the nurse thansupport for the family.The nurse was just asuneducated to FirstNations as the FirstNations are uneducatedto cancer.”

Rural Palliative Care Model in Western Australia

In the past, palliative care in Western Australia had beendeveloped in an ad hoc way, leading to inconsistencies incoordination across the rural health region. The RuralPalliative Care Model (RPCM) was developed in 2008 as aquality improvement framework to help ensure thatsustainable regional palliative care services are designedto meet standardized criteria. By improving local carecoordination and access to medical care and establishingformal links with urban palliation specialists, the RPCM ishelping to improve palliative care for rural residents. TheRPCM also has a special focus on Indigenous Australianslocated in the region. According to the model, all healthregions in Western Australia will have a SteeringCommittee comprised of stakeholders such as residentialcare providers, Aboriginal Medical Services, publichospitals, community services and Home and CommunityCare. Regional and local coordinators work to maintainconsistent standards of care and ensure that all patientshave comprehensive care plans. Indigenous organizationsconsulted on community palliative needs and health careproviders who work with Indigenous Australians wereinterviewed to inform the development of strategies topromote holistic and culturally appropriate care forIndigenous people. Although this model has not yet beenevaluated, and it is too early to discern the long termhealth benefits, the model has clearly addressedidentified gaps in Indigenous palliative care.

Survivor support groups and networks have arisen inregions across Canada; some have been formal programsdeveloped by cancer organizations, and others have beengrassroots movements initiated by community members.However First Nations across Canada have expressed thatmany of these programs are not accessible in theircommunities or relevant to the unique experiences of FirstNations cancer survivors. Improving the availability ofculturally appropriate informational and emotional supportcan help First Nations cancer survivors to adjust to life aftercancer.

Supporting Survivors

Adapting to life as a cancer survivor is not always an easytransition and dealing with the aftermath and side effectsof cancer treatment can often be a challenging experience.These challenges are amplified for First Nations who haveidentified the lack of survivorship services in somecommunities as a significant gap in care for those who haveovercome cancer.

Cultural, socioeconomic and environmental factorscontribute to the fact that First Nations cancer survivorsmay have different experiences of survivorship than otherCanadians.205 As a result, formal survivorship programslocated outside their community may not be relevant forsome First Nations, as they may experience difficultyrelating to non-First Nations cancer survivors.

Many First Nations have unique beliefs about healing andovercoming illness, which corresponds with a need fordifferent resources and types of support for cancersurvivors.206 Consulting traditional healers and re-establishing balance and wholeness in the spiritualenvironment may be important to some First Nations, andthis need cannot always be accommodated by supportservices based outside First Nations’ communities.Establishing an environment for cancer survivors that isculturally based can help to ensure that the spiritualcomponent of healing is adequately addressed.207

In addition, informational support available for cancersurvivors may not be applicable in some First Nationscommunities. For example, living a healthy lifestyle aftercancer is often considered a positive step forward inreducing the risk of cancer coming back.208 However, livingin a rural, remote or isolated First Nation community maychange the availability and selection of food choice, makinghealthier foods expensive and sometimes unaffordable.209

Barriers to accessing healthy foods contribute to everydaychallenges in becoming healthy again as a cancer survivor.

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Training Manual for First Nations Home SupportWorkers

Developed by the Canadian Hospice Palliative CareAssociation (CHPCA), with funding from Health Canada,this manual is designed to guide facilitators as they trainhome support workers working with First Nationsindividuals. The purpose of the manual is to strengthenthe knowledge and skill of home support staff as theyprovide hospice palliative care in First Nationscommunities. The CHPCA sponsored a roundtablemeeting to identify key issues in palliative care for FirstNations. The developers of the manual recognized thatFirst Nations cultures are rich and diverse, and that notall First Nations experience death and dying in the sameway. Therefore this manual simply provides the basics,which allows facilitators to develop and customize theinformation to better suit their community’s uniqueneeds. The manual also includes an inventory ofresources and tools for palliative care for use by FirstNations communities, such as handouts and quizzes, anda palliative medicine wheel for care providers.

Eleanor Carriere’s Cancer Pathway...Survivorship“In May the doctor told me to take a year off and he gaveme a letter and I took it to work. I had to apply for that“Sunlife” benefit when they gave me a year off it was a suchchallenge because the finance worker in Nelson Housedidn’t even look at my application, it was in her mailbox for3 weeks because she was so busy and so I did fill out thatform. After 3 months went by I never got any money forfive months and I never got any cheques from SunLife forfive months. It was frustrating for me to try get that money,the wait and filling out forms and them saying that that’snot the right form.”

The local realities of many First Nations communities alsocontribute to unique experiences of the practical challengesof survivorship, such as finances and employment. Aftertheir treatment, some cancer patients may need to taketime off of work to heal and regain their strength. SomeFirst Nations have identified that barriers to attainingfinancial support during this time can be challenging andmay cause excess stress during the healing process. Inaddition, the financial burden of cancer treatment andassociated costs outside of the realm of coverage may bechallenging for some First Nations cancer survivors toovercome.210

Qualitative feedback suggests that having First Nationscancer survivors act as champions in their communities canhelp to encourage other survivors to feel comfortablesharing their stories and experiences. In some communities,there exist barriers to open discussion about cancer, assome believe that talking about cancer may invite it into thebody.211 For survivors, the fear of cancer recurring mayexacerbate this reluctance to discuss their cancer journey.Support groups based in First Nations communities, withFirst Nations workers and facilitators trained in providingsupport services, have the potential to empower cancersurvivors and raise awareness about survivorship. InOntario, the Miles to Go Cancer Support Group, founded bya First Nation cancer survivor, has supported cancersurvivors, families and care givers from the Six Nations areafor over ten years.

For First Nations in rural and remote communities,accessing grassroots community organizations may bechallenging. In small communities, it may be difficult forcancer survivors to connect with each other and they maynot know where to turn to receive support.212 Telehealth,presented as a promising practice in Section 3.1, offers thepotential to facilitate connections between cancer survivorsin isolated communities. In Washington and Alaska, atelehealth initiative has experienced success in bringingtogether cancer survivors from these two states that live inrural communities.

Case Management

Even though they are well, most survivors remain on theircancer journey, as they must continue going to follow-up

appointments. The general challenges related to accessinghealth services tend to persist for many survivors. Inaddition, due to the lack of cancer resources in somecommunities, First Nations may be unaware of the need tocontinue with the follow-up care, as well as strategies forreducing the risk of cancer recurrence.

The absence of First Nations identification amongst cancerpatients creates a particular challenge for survivors. Careproviders in First Nations communities may not be awarethat a patient has experienced cancer, which makes itdifficult for them to provide the necessary follow-up care.Especially in communities that experience constantturnover of health staff, First Nations may grow tired ofhaving to repeat their entire cancer history.213 Barriers tocommunication between the different levels of health caremake it challenging to document a patient’s journeythrough the cancer system and provide appropriate careafter treatment has ended.

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Miles to Go, Cancer Support Group

Started in 1998 by a cancer survivor from a First Nationscommunity, this community led, grass roots cancersupport group works to support one another throughtheir cancer journey. Although everyone is welcome toparticipate in the group, many are First Nations cancersurvivors, families and care givers from the Six Nationsarea in Ontario. The local First Nations health centreprovides meeting space for the group to meet twice permonth, where members gather, talk and share a mealtogether. Miles to Go operates solely on fundraising anddonations, and through collaboration with communityservices, receives support from local programs such asthe Juravinski Aboriginal Patient Navigator Program. Thegroup also works toward changing the mindset ofcommunity members to be empowered rather thanfearful of cancer. Miles to Go has built a strong supportnetwork within a large First Nations community, whichhas helped to raise awareness around cancer.

Life After Cancer

The days, months and even years following a final cancertreatment can be very exciting, but also an uncertain timefor survivors and their loved ones. For most, the journeytowards surviving cancer is not easy, and many factors cancontribute to challenges along the way. For First Nations,

unique healthconcerns and barriersto health servicedelivery, add to thenumber of obstaclesthat patients mustovercome to beatcancer.

Surviving cancer canhave a powerfulinfluence on an individual’s attitudes, experiences andapproaches to life.214 Integrating these new outlooks withthe local realities of their community can help survivors toadjust to life after cancer.

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Telehealth for Cancer Support Groups in Rural AmericanIndian/Alaska Native Communities

In recent years, American Indian and Alaska Nativecommunities throughout the USA have expressed thatcancer support groups were often not available in ruralareas. Connecting with other cancer survivors wasidentified as very important to Indian and Nativepatients, especially those in isolated rural communities,where survivors are typically fewer in number. Telehealthwas identified as an opportunity for addressing follow-upcare and quality-of-life needs for rural cancer survivors.The Telehealth for Cancer Support Groups program aroseas a way to facilitate support group meetings, bridgegeographic distance and increase access to care in ruralsettings. A total of 25 rural tribal sites in Washington andAlaska participated in the program, and 12 support groupmeetings were conducted from February 2008 toSeptember 2009. The meetings were led by an urbanbased facilitator, and each site had a local meetingcoordinator, such as a nurse, social worker or a cancersurvivor from the community. Videoconferencing wasusually set up in a rural tribal health clinic for themonthly meetings. Meeting content varied, but includedgroup counseling, education programs, presentations byexperts and information on topics chosen by meetingparticipants. Over the course of several months,participants in the program were able to develop a levelof comfort and trust; participants also indicated that theybenefited from learning that they were not alone.Geographical barriers and low population density meantthat in most sites, before the videoconferencing, supportgroups were completely unavailable for cancer survivors.The Telehealth for Cancer Support Groups has beensuccessful in filling this gap and participants haveexpressed satisfaction with the program.

“There are somegrassroots breastcancer survivor groups,but it is unlikely thereare any such groups inisolated communities.”

5.0 Conclusion

This report provides an overview of the landscape of FirstNations cancer care and control as we currently know it.Addressing the gaps identified in this report will havepositive effect on the patient experience and outcomes.

The promising practices profiled in this report provideexamples of efforts to address the gaps in the existingcancer care system and can be leveraged and adapted byothers to meet the needs of First Nations communities andto improve the patient journey.

There exists a need for updated national information oncancer incidence, mortality and patient experience.Aboriginal-specific cancer research has been identified inthis report as a key gap and existing efforts to improve theidentification of First Nations cancer patients will behighlighted as potential opportunities to address this gap.

Developing culturally responsive methods to identify FirstNations cancer patients can contribute to a betterunderstanding of cancer in this population and lead to moreeffective cancer control efforts.

5.1 Epilogue

Advancements in First Nations cancer care continue to bemade since the release of the Action Plan. The Partnershiphas partnered to support the expansion of the SaintElizabeth @YourSide Colleague® Cancer Care Course, theevaluation of impact of the Health Empowerment for You!(HEY!) curriculum as part of the CLASP initiative with theFederation of Saskatchewan Indian Nations, and with theAssembly of First Nations to adapt the Quebec CancerToolkit to a national tool.

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Conclusion

Provincial agencies and First Nations health organizationscontinue to address these gaps with initiatives like theAboriginal Cancer Strategy II from Cancer Care Ontario, andthe recently released Manitoba’s Cancer Strategy (2012-2017) from the government of Manitoba.

Saint Elizabeth @YoursideColleague® Cancer CareCourse

The Cancer Care course wasdeveloped by Saint Elizabeth in2009 as part of their @YoursideColleague® platform throughpartnership with the CanadianPartnership Against Cancer.Originally launched in British Columbia, Manitoba andSaskatchewan, the course quickly became the number 1ranked course in terms of use among 14 courses availableon the web-based learning platform. The course wasexpanded to Alberta and Ontario in the first phase ofexpansion and to Quebec and the Atlantic provinces in thenext phase. The Cancer Care course is now available in allprovinces and work is underway to bring this course to theNorthwest Territories. The Cancer Care course has reachedmore than 1,300 health workers from almost 360 FirstNations communities and organizations across theprovinces.

Aboriginal NursesAssociation of Canada

A survey by the AboriginalNurses Association of Canada oneducational needs of nurses working in First Nations healthtransferred communities revealed that the greatest demandfor training is in the following four topics:

Chronic disease management (62 per cent) •Traditional health and medicine (61 per cent)•Health promotion and community wellness (55 per•cent)Cultural competency and cultural safety (53 per•cent)

Health Empowerment for You!(HEY!)

The Health Empowerment for You!(HEY!) project was part of the CLASP 1initiative at the Partnership.Representatives from Saskatchewan,Manitoba and Alberta joined together to develop a healthyliving curriculum. Using a train the trainer format, teachersand community leaders from First Nations communitiesattended workshops to learn the curriculum and bring itback to their communities and schools. The HEY! initiativehas trained 105 trainers from 78 bands in Manitoba andSaskatchewan. In the first evaluation the course was seenas being a success by the participants, the creators of thecurriculum have received requests for the curriculum fromother First Nations communities. Red River College iscurrently working to integrate the HEY! curriculum in theirnursing program, and Sagkeeng First Nation in Manitoba isincorporating the curriculum in their existing health andeducation system. The Partnership has committed fundingto evaluate the impact of the curriculum at the communitylevel for possible expansion across Canada.

Cancer Care Ontario’sAboriginal Cancer Strategy II

The Aboriginal Cancer Strategy II(ACSII) was released by CancerCare Ontario (CCO) in June 2012.This report is a renewal of the firstAboriginal Cancer Strategy (2004-2009) and was built incollaboration with First Nations, Inuit and Métis Peoplesacross Ontario. The ACSII seeks to improve theperformance of the cancer system with and for FirstNations, Inuit and Métis in Ontario in a way that honoursthe Aboriginal Path of Well-being.

This document sets out six strategic priorities specific toFirst Nations, Inuit and Métis cancer control that supportthe overarching Ontario Cancer Plan III:

Build productive relationships•Research and surveillance•Prevention•Screening blitz•Supportive care•Education•

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Manitoba’s Cancer Strategy2012-2017

Built on the first five year plan releasedin June 2007, Manitoba’s CancerStrategy 2012-2017 focuses onmeasuring need and addressinginequalities in cancer care. Engagingpatients in the journey and decision-making is a priority of the new strategy. As part of thisapproach, the Province of Manitoba is establishing a‘Vulnerable Populations Program’ at CancerCare Manitoba,the goal of which is to improve access to cancer services forFirst Nations, Inuit and Métis populations, among others.

Alberta’s Cancer Plan To 2030

Ten strategies for change are set out inChanging Our Future: Alberta’s CancerPlan to 2030 to create acomprehensive and effective systemof cancer control in the province. Partsof the plan relevant to the prioritiesidentified by First Nations include:

Support, engage and integrate primary health care•providers in the delivery of cancer services in thehome or community and to underservedpopulationsIncrease the participation of Aboriginal and•ethnocultural communities in cancer screening Implement a provincial Advance Care Planning•process to provide patients and families with theopportunity to define goals for their care.Provide cancer patients, survivors, their families•and caregivers with the best possible psychosocial,physical and supportive care throughout theircancer journey. Introduce palliative care early inthe course of cancer treatment, whereappropriate.

The Aboriginal Cancer Care Strategy (ACCS)Northern Cancer Control Strategy (NCCS)British Columbia

The ACCS was developed in response to feedback from theNCCS Aboriginal Needs Assessment which was undertakenin 2010. Concerns had been expressed that, without aformal process in place, Aboriginal cancer care needs maynot be fulfilled. By developing a strategy specific to theAboriginal population in Northern B.C. and involvinginterested individuals, Aboriginal cancer care needs will beaddressed. The strategy helps to give ownership tocommunities across the North with respect to projectdevelopment and implementation, and ensures thatAboriginal voices are heard in the planning of cancer careservices. Through the NCCS, the BC Cancer Agency,Northern Health, and the Provincial Health ServicesAuthority are working together to improve cancer care innorthern B.C.

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1 For the purpose of this report, the term “First Peoples”includes First Nations, Inuit and Métis Peoples in Canada,inclusively.

2 Health Council of Canada. The Health Status of Canada’sFirst Nations, Inuit and Métis Peoples. 2005.

3 Cottrell, J., et al. Comparing Cancer Profiles and Survival ofAboriginal and Non-Aboriginal Patients in South Australia.Asian Pacific Journal of Cancer Prevention. 2007. Oct-Dec;8(4):495-501.

4 First Nations Information Governance Centre. First NationsRegional Health Survey 2008/10 – National Report.Chapter 18. 2012.

5 Statistics Canada. Aboriginal Peoples and Language.National Household Survey, 2011. 2013.

6 Statistics Canada. Aboriginal Peoples in Canada: FirstNations People, Métis and Inuit. National HouseholdSurvey, 2011. 2013.

7 Assembly of First Nations. 2012: First Nations Plan. 2012.

8 Department of Indian Affairs and Northern DevelopmentCanada. Registered Indian Population by Sex andResidence: 2010. 2011.

9 Statistics Canada. 2006 Census: Aboriginal Peoples inCanada in 2006: Inuit, Métis and First Nations, 2006Census: First Nations people. Accessed at:http://www12.statcan.ca/census-recensement/2006/as-sa/97-558/p16-eng.cfm#01. May 31, 2013.

10 Health Canada and the Assembly of First Nations. YourHealth Benefits: A Guide for First Nations to Access Non-Insured Health Benefits. 2012.

11 Health Canada and the Assembly of First Nations. YourHealth Benefits: A Guide for First Nations to Access Non-Insured Health Benefits. 2012.

12 Assembly of First Nations/First Nations InformationGovernance Centre. First Nations Regional LongitudinalHealth Survey 2002/03 – The Peoples’ Report. 2007.

13 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 12. 2012.

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Endnotes

14 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

15 CancerCare Manitoba. Aboriginal Cancer Control ProgressReport 2007/2008. 2009.

16 Earle, Lynda. Understanding Chronic Disease and the Rolefor Traditional Approaches in Aboriginal Communities.National Collaborating Centre for Aboriginal Health. 2011.

17 Reading, J. The Crisis of Chronic Disease among AboriginalPeoples. Centre for Aboriginal Health Research, Universityof Victoria. 2009.

18 Earle, Lynda. Understanding Chronic Disease and the Rolefor Traditional Approaches in Aboriginal Communities.National Collaborating Centre for Aboriginal Health. 2011.

19 Tjepkema, Michael and Wilkins, Russell. Remaining lifeexpectancy at age 25 and probability of survival to age75, by socio-economic status and Aboriginal ancestry.Statistics Canada. 2011.

20 Statistics Canada. 2006 Census.21 Earle, Lynda. Understanding Chronic Disease and the Role

for Traditional Approaches in Aboriginal Communities.National Collaborating Centre for Aboriginal Health. 2011.

22 Earle, Lynda. Understanding Chronic Disease and the Rolefor Traditional Approaches in Aboriginal Communities.National Collaborating Centre for Aboriginal Health. 2011.

23 Statistics Canada. Canadian Community Health Survey,2009.

24 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. 2012.

25 Colditz, G.A., et al. Applying What We Know to AccelerateCancer Prevention. Sci Transl Med. 2012 March 28;4(127): 127.

26 Reading, J. The Crisis of Chronic Disease among AboriginalPeoples. Centre for Aboriginal Health Research. Universityof Victoria. 2009.

27 Health Canada. Health Determinants for First Nations inAlberta: 2010. 2009.

28 Statistics Canada. Aboriginal Peoples and Language.National Household Survey, 2011. 2013.

29 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009

30 Tjepkema, Michael, et al. Mortality of Métis andRegistered Indian adults in Canada: An 11-year follow-upstudy. Statistics Canada, 2009

31 Tjepkema, Michael, et al. Mortality of Métis andRegistered Indian adults in Canada: An 11-year follow-upstudy. Statistics Canada, 2009.

32 Cancer Care Ontario. Analysis of the Findings: AboriginalCancer Care Needs Assessment. Aboriginal Cancer CareUnit. 2002.

33 Health Council of Canada. The Health Status of Canada’sFirst Nations Inuit and Métis Peoples. 2005.

34 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

35 Marrett, L., and Chaudry, M. Cancer incidence andmortality in Ontario First Nations, 1968-1991 (Canada).Cancer Causes and Control Journal. 2003.

36 Alvi, R.A. Breast, Cervical and Colorectal Cancer SurvivalRates for Northern Saskatchewan Residents and FirstNations. Thesis (M.Sc.), University of Saskatchewan. 1999.

37 Sheppard, A., et al. Detection of Later Stage Breast Cancerin First Nations Women in Ontario. Canadian Journal ofPublic Health. 2010. Jan-Feb;101(1):101-5.

38 Aboriginal Cancer Care Unit, Cancer Care Ontario.Aboriginal Cancer Care Strategy II. 2012.

39 First Nations Centre, National Aboriginal HealthOrganization. Understanding Health Indicators. 2007.

40 Aboriginal Cancer Care Unit, Cancer Care Ontario.Analysis of the Findings: Aboriginal Cancer Care NeedsAssessment. 2002.

41 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 18. 2012.

42 First Nations Health Council. Communicable DiseasePrevention Planning Committee. Website.http://www.fnhc.ca/index.php/health_actions/primary_care/communicable_diseases_and_pandemic_planning/

43 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. 2012.

44 Assembly of First Nations. Cancer and First Nations. 2008.(Power Point Presentation)

45 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 1. 2012.

46 Health Council of Canada. Progress Report 2012: HealthCare Renewal in Canada. 2012.

47 Health Council of Canada. Progress Report 2012: HealthCare Renewal in Canada. 2012

48 Bell Browne Molnar & Delicate Consulting. March 2011Performance Evaluation of the 2003 Funding Agreement.2011.

49 Assembly of Manitoba Chiefs. Website:http://manitobachiefs.com

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50 Health Council of Canada. Progress Report 2012: HealthCare Renewal in Canada. 2012.

51 Manitoba Government. “More than 100 Telehealth SitesBrings Health-Care Services Closer to Home.” NewsRelease: April 14, 2011. Website: www.gov.mb.ca

52 Health Council of Canada. Progress Report 2012: HealthCare Renewal in Canada. 2012.

53 Statistics Canada. Canadian Community Health Survey:2007. 2008.

54 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

55 Assembly of First Nations. Cancer and First Nations. 2008.(Power Point Presentation)

56 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 27. 2012.

57 Health Council of Canada. The Health Status of Canada’sFirst Nations, Inuit and Métis Peoples. 2005.

58 Saint Elizabeth Health Care and Assembly of ManitobaChiefs. Patient Wait Time Guarantee Pilot Project inManitoba First Nations. 2009.

59 Saint Elizabeth Health Care and Assembly of ManitobaChiefs. Patient Wait Time Guarantee Pilot Project inManitoba First Nations. 2009.

60 Canadian Association of Provincial Cancer Agencies(CAPCA) website: http://www.capca.ca/about-us.

61 Cancer Care Ontario. “Aboriginal cancer programs”.Website:https://www.cancercare.on.ca/about/programs/aborstrategy/. Accessed 31 May 2013..

62 CancerCare Manitoba. Aboriginal Cancer Control ProgressReport. 2009.

63 Northern Cancer Control Strategy. “Aboriginal CancerCare Strategy”. Website:http://www.northerncancerstrategy.ca/AboriginalHealth/AboriginalCancerCareStrategy.aspx. Accessed 31 May2013.

64 Aboriginal Cancer Care Unit, Cancer Care Ontario.Analysis of the Findings: Aboriginal Cancer Care NeedsAssessment. 2002.

65 Health Council of Canada. The Health Status of Canada’sFirst Nations, Inuit and Métis Peoples. 2005.

66 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

67 First Nations and Inuit Health Branch and the Assembly ofFirst Nations. Your Health Benefits: A Guide for FirstNations to Access Non-Insured Health Benefits. 2012.

68 First Nations and Inuit Health Branch, Health Canada.Transfer of Health Programs to First Nations and InuitCommunities – Handbook 1: An Introduction to ThreeApproaches. 2004.

69 Health Canada. Ten Years of Health Transfer First Nationand Inuit Control. 2005. http://www.hc-sc.gc.ca/fniah-spnia/pubs/finance/_agree-accord/10_years_ans_trans/index-eng.php

70 Health Canada. Ten Years of Health Transfer First Nationand Inuit Control. 2005. http://www.hc-sc.gc.ca/fniah-spnia/pubs/finance/_agree-accord/10_years_ans_trans/index-eng.ph

71 Lavoie, J., and Smith, R. First Nations Health Networks: aCollaborative System Approach to Health Transfer.Healthcare Policy Journal. 2008. November; 4(2): 101–112.

72 Lavoie, J.G., et al. Why Equity in Financing First NationsOn-Reserve Health Services Matters: Findings from the2005 National Evaluation of the Health Transfer Policy.Healthcare Policy Journal. 2007. May;2(4):79-96.

73 First Nations Leadership Council, Government of Canadaand British Columbia Government. Tripartite First NationsHealth Plan. 2007.

74 First Nations Health Council, British ColumbiaGovernment, Health Canada. British Columbia TripartiteFirst Nations Health Plan: Year in Review, 2008-2009.

75 Province of British Columbia. Transformative ChangeAccord. http://www.gov.bc.ca/arr/social/change.html

76 Vogel, L. British Columbia First Nations to Run own HealthSystem. Canadian Medical Association Journal. 2011.November 22: vol. 183 no. 17 E1227-E1228.

77 First Nations Leadership Council, Government of Canadaand British Columbia Government. Tripartite First NationsHealth Plan. 2007.

78 Cancer Care Ontario. First Nations Cancer Research andSurveillance Priorities for Canada: Workshop Report, Sept2003. 2004.

79 Ministry of Aboriginal Relations and Reconciliation,Government of British Columbia. Government Standardfor Aboriginal Administrative Data. 2007.

80 The Bridge Consulting Group. Aboriginal Data IndicatorsProject: Project Evaluation, Final Report. CanadianPartnership Against Cancer. 2011.

81 Aboriginal Cancer Care Unit, Cancer Care Ontario.Analysis of the Findings: Aboriginal Cancer Care NeedsAssessment. 2002.

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82 Aboriginal Cancer Care Unit, Cancer Care Ontario.Analysis of the Findings: Aboriginal Cancer Care NeedsAssessment. 2002.

83 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

84 Jensen-Ross, C. Cervical Screening Among SouthernAlberta First Nations Women Living Off-Reserve. Thesis,University of Lethbridge. 2006.

85 Ellerby, J.H., et al. Bioethics for clinicians: 18. AboriginalCultures. Canadian Medical Association Journal. October3, 2000. vol. 163 no. 7, 845-850.

86 Cancer Care Ontario. A Prevention and ScreeningResource Kit for Primary Care Providers: Honouring theAboriginal Path of Well Being.

87 Loppie, C. and Wien, F. Our Journey: First NationsExperience in Navigating Cancer Care. Cancer Care NovaScotia. 2005.

88 Aboriginal Cancer Care Unit, Cancer Care Ontario.Analysis of the Findings: Aboriginal Cancer Care NeedsAssessment. 2002.

89 Cancer Care Ontario. A Prevention and ScreeningResource Kit for Primary Care Providers: Honouring theAboriginal Path of Well Being.

90 National Aboriginal Health Organization. CancerAwareness Toolkit. 2011.

91 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

92 Ellerby, J.H., et al. Bioethics for clinicians: 18. AboriginalCultures. Canadian Medical Association Journal. October3, 2000. vol. 163 no. 7, 845-850.

93 Canadian Cancer Encyclopedia. Overview of Cancer.Website: www.cancer.ca.

94 National Aboriginal Health Organization. CancerAwareness Toolkit. 2011.

95 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

96 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

97 Canadian Cancer Society. Knowing Your Body - Prevention.Website: www.cancer.ca.

98 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 15. 2012.

99 Assembly of First Nations. Access to Cancer Screening andFirst Nations. 2009.

100 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

102 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

103 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 15. 2012.

104 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 15. 2012.

105 Canadian Cancer Society. Cancer screening in Canada notrealizing full potential. Canadian Cancer Society MediaCentre. 11 April 2006.

106 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 15. 2012.

107 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

108 Canadian Cancer Society. Getting Checked - CervicalCancer. 2011. Website: www.cancer.ca.

109 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009. .

110 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 15. 2012.

111 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 15. 2012.

112 National Aboriginal Health Organization. CancerAwareness Toolkit. 2011.

114 Canadian Partnership Against Cancer. ColorectalScreening in Canada: Current Facts and Resources.Cancer Control Snapshot. 2010.

115 Cancer Care Ontario. Let’s Take a StandAgainst...Colorectal Cancer - Evaluation Report. 2011.

116 National Aboriginal Health Organization. CancerAwareness Toolkit. 2011.

117 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

118 Canadian Cancer Society. Getting Checked - ProstateCancer. 2010. Website: www.cancer.ca.

119 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 15. 2012.

120 First Nations Information Governance Centre. FirstNations Regional Health Survey 2008/10 – NationalReport. Chapter 15. 2012.

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121 Loppie, C. and Wein, F. Our Journey: First NationsExperience in Navigating Cancer Care. Cancer Care NovaScotia. 2005.

122 Jensen-Ross, C. Cervical Screening Among SouthernAlberta First Nations Women Living Off-Reserve. Thesis,University of Lethbridge, 2006.

123 Steven, D., et al. Knowledge, Attitudes, Beliefs, andPractices Regarding Breast and Cervical Cancer Screeningin Selected Ethnocultural Groups in NorthwesternOntario. Oncology Nursing Forum. 2004.

124 Hyman, M. Environmental Scan of Research and Servicesfor Aboriginal Women in Alberta. Thesis, University ofCalgary. 2005.

125 Minore, B., et al. How Clients’ Choices Influence CancerCare in Northern Aboriginal Communities. InternationalJournal of Circumpolar Health. 2004;63 Suppl 2:129-32.

126 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

127 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

128 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

129 Decker, K.M. Retention of Screened Women in theManitoba Breast Screening Program. Canadian Journal ofPublic Health. 2008 May-Jun;99(3):216-20.

130 St. Elizabeth Health Care and Assembly of ManitobaChiefs. Patient Wait Time Guarantee Pilot Project inManitoba First Nations. 2009.

131 Aboriginal Cancer Care Unit, Cancer Care Ontario.Analysis of the Findings: Aboriginal Cancer Care NeedsAssessment. 2002.

132 Hanvey, L. Rural Nursing Practice in Canada: A DiscussionPaper. Canadian Nurses Association. 2005.

133 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

134 Jensen-Ross, C. Cervical Screening Among SouthernAlberta First Nations Women Living Off-Reserve. Thesis,University of Lethbridge, 2006.

135 Minore, B., et al. How Clients’ Choices Influence CancerCare in Northern Aboriginal Communities. InternationalJournal of Circumpolar Health. 2004;63 Suppl 2:129-32.

136 Boone, M. et al. It’s Just So Different Up Here: Continuityof Care for Cancer Patients in Northwestern Ontario FirstNations Communities. Final Report Submitted To:Norman M. Paterson Foundation, Northern CancerResearch Foundation, First Nations and Inuit HealthBranch (Ontario Region), Health Canada. 2002.

137 Boone, M. et al. It’s Just So Different Up Here: Continuityof Care for Cancer Patients in Northwestern Ontario FirstNations Communities. Final Report Submitted To:Norman M. Paterson Foundation, Northern CancerResearch Foundation, First Nations and Inuit HealthBranch (Ontario Region), Health Canada. 2002.

138 Sutherland, M. Provincial Prevention and ScreeningAboriginal Collaborative Working Group Meeting Report.NW Aboriginal Cancer Care Committee. 2008.

139 Jensen-Ross, C. Cervical Screening Among SouthernAlberta First Nations Women Living Off-Reserve. Thesis,University of Lethbridge, 2006.

140 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

141 Cancer Care Ontario. Ontario Breast Screening Program:20th Anniversary Report. 2004.

142 CancerCare Manitoba. CancerCare Manitoba 2010/2011Progress Report.

143 CancerCare Manitoba. “Aboriginal Centre of Excellence”.Website: www.cancercare.mb.ca.

144 CancerCare Manitoba. “Aboriginal Centre of Excellence”.Website: www.cancercare.mb.ca.

145 CancerCare Manitoba. CancerCare Manitoba 2010/2011Progress Report.

146 Sheppard, A., et al. Detection of Later Stage BreastCancer in First Nations Women in Ontario, Canada.Canadian Journal of Public Health. 2010 Jan-Feb;101(1):101-5.

147 Tatemichi, S., et al. Breast Cancer Screening: First NationsCommunities in New Brunswick. Canadian FamilyPhysician Journal. 2002. 48:1084-1089.

148 Sheppard, A., et al. Detection of Later Stage BreastCancer in First Nations Women in Ontario, Canada.Canadian Journal of Public Health. 2010 Jan-Feb;101(1):101-5.

149 Minore, B., et al. How Clients’ Choices Influence CancerCare in Northern Aboriginal Communities. InternationalJournal of Circumpolar Health. 2004;63 Suppl 2:129-32.

150 Assembly of First Nations. Access to Cancer Screeningand First Nations. 2009.

151 Minore, B., et al. How Clients’ Choices Influence CancerCare in Northern Aboriginal Communities. InternationalJournal of Circumpolar Health. 2004;63 Suppl 2:129-32.

152 Loppie, C. and Wien, F. Our Journey: First NationsExperience in Navigating Cancer Care. Cancer Care NovaScotia. 2005.

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153 Ellerby, J.H., et al. Bioethics for clinicians: 18. AboriginalCultures. Canadian Medical Association Journal. October3, 2000. vol. 163 no. 7, 845-850.

154 First Nations Centre, National Aboriginal HealthOrganization. Understanding Health Indicators. 2007.

155 Loppie, C. and Wien, F. Our Journey: First NationsExperience in Navigating Cancer Care. Cancer Care NovaScotia. 2005.

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Canadian Partnership Against Cancer1 University Avenue, 3rd FloorToronto, Ontario, Canada, M5J 2P1tel: 416.915.9222, toll-free: 1.877.360.1665www.partnershipagainstcancer.ca

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