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First Nations Centre National Aboriginal Health Organization220 Laurie


2Table of ContentsIntroduction1Part I First Nations Community Health Needs2What is health information2Why is health information essential for community health planning33Research4What is research45How

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Document on Subject : "First Nations Centre National Aboriginal Health Organization220 Laurie"— Transcript:

1 First Nations Centre, National Aborigina
First Nations Centre, National Aboriginal Health Organization220 Laurier Avenue West, Suite 1200Ottawa, ON K1P 5Z9Tel: (613) 237-9462Toll-free: 1-877-602-4445www.naho.ca/fnc 2 Table of ContentsIntroduction.....................1Part I First Nations Community Health Needs.........2What is health information?.............................................................................................................................2Why is health information essential for community health planning?............................................................3................................................................................................3Research...........................4What is research?.............................................................................................................................................4....................................................................................................................5How is research done?.....................................................................................................................................7How can research results improve community health?...................................................................................8Public Health Research and Practice.........................................................................................................10Community Health Needs Assessment.......................................................................................................

2 ...10...................................
...10...................................11Epidemiology.................................................................................................................................................12Barriers to Community Health Development ...............................................................................................14.................................15Part II Transfer of Health Services to the Control of First NationsOCAP (Ownership, Control, Access and Possession)...............................................................................17What does OCAP mean for First Nations health research and information?................................................18Building First Nations health research capacity............................................................................................18Research Ethics and Privacy.......................................................................................................................19Respect for individuals..................................................................................................................................19........................20Consent and secondary research....................................................................................................................20.........................20Ethical review in First Nations communities.................................................................................................21Privacy and health information.............................

3 ........................................
.........................................................................................21The First Nations context...............................................................................................................................23Additional Resources....24.........................25.........................28..................30 4 IntroductionHealth governance is a crucial component of self-deter-status for First Nations Peoples. As part of its mandate leadership. This information is intended to get readers of these practices in their communities. Also, a solid s�5NDERSTANDING�2ESEARCHs�(EALTH�3URVEILLANCEs�0RIVACYs�%THICS�IN�(EALTH�2ESEARCHs�#ONSIDERATIONS�AND�4EMPLATES�FOR��s�5NDERSTANDING�THE�0RINCIPLES�OF��s�!SSESSMENT�AND�0LANNING�4OOL�+IT�s�(EALTH�#AREERS�ANDs�3ACRED�7AYS�OF�,IFE�4RADITIONAL�� Health Informationh7ITHOUT�HEALTHY �SOCIALLY�DEVELOPED�YOUTH �WE�HAVE�NO�LEADERS�FOR�THE�FUTURE�7ITHOUT�AVAILABLE �HIGH QUALITY�CARE�FOR�THE�ELDERLY �WE�HAVE�NO�GUIDANCE�OR�WISDOM�FROM�TH

4 E�PAST�7ITHOUT�
E�PAST�7ITHOUT�STRONG �COMMITTED�PEOPLE�ACTING�TODAY�TO�CHAMPION�OUR�RIGHTS�AND�TO�FURTHER�OUR�NATION� 5;0瀀�INTERESTS �WE�HAVE�NO�GUARANTEES�FOR�ANYONE�BEYOND�TODAYx�)F�WE�ARE�TO�SURVIVE�AS�A�VIBRANT�CULTURE �AND�AS�STRONG�AND�INDEPENDENT�.ATIONS �WE�MUST�ATTEND�TO�THE�HEALTH�OF�OUR�PEOPLEv4OM�)RON� �&OURTH�6ICE #HIEF �&EDERATION�OF��3ASKATCHEWAN�)NDIAN�.ATIONSsame way, there are recurring themes. Health is of-family, and community. Well-being flows from bal-seemed very different from traditional First Nations health knowledge and practices. While First Nations interconnectivity, western health science tended to However, for the past several decades, western health holistic understanding of health. There is now abun-physical health. Further, the social determinants of is moving closer to a traditional First Nations under-Traditional healers had the most knowledge about that different than it was in the past. But the nature of information is gathered, recorded and used. We hope enhancing your ability to collect and use health infor-What is Health Inf

5 ormation?Although they are often used in
ormation?Although they are often used interchangeably, data and information mean slightly different things:‡'DWD‡,QIRUPDWLRQsified, organized, related or interpreted within a framework so that meaning emerges. Any information, whether oral a health care provider, public health authority or health ‡+HDOWKLQIRUPDWLRQLVPDGHXSRIGDWDDERXW‡+HDOWKGDWDEHFRPHVKHDOWKLQIRUPDWLRQZKHQit is gathered, organized and interpreted for a ‡+HDOWKLQIRUPDWLRQLVFROOHFWHGDQGSURGXFHGE\Part I First Nations Community Health Needs Why is health information essential for community health planning?plan and make decisions. The type of information that A hunter might plan a hunting trip based on the for products and services. Similarly, health planners order to plan and implement effective health programs tion is the first step toward effective community health ways to collect, organize, analyze and interpret exist-)LJXUH+HDOWK,QIRUPDWLRQ5HVHDUFK3ODQQLQJRaise awareness of health issues‡6HWSULRULWLHVPDNHSODQVDQGDOORFDWHresources for the health sectorcils could decide to target injury prevention as a health priority.‡/REE\&

6 #x0003;IRUJRYHUQPHQWIXQG
#x0003;IRUJRYHUQPHQWIXQGLQJRUVWUHQJWKHQfunding proposals‡7DUJHWDQGGHVLJQHIIHFWLYHKHDOWKSURJUDPVor interventionsprogram or interventionprevention program is having an effect.Where can I find health dataand information?The Assembly of First Nations (AFN) has stated that, Assembly of First Nations (AFN) has stated that, many circumstances.5 First Nations health data and information are easier to find at the national and regional levels, where various agencies are mandated to collect and analyze health data. Some national and regional sources for First Nations health data and information are:‡7KH (RHS), now hosted at the Assembly of First Nations, offers unique First Nations data ‡7KHlyzes First Nations health data (http://www.‡)1,+%DOVRSXEOLVKHVA Statistical Profile on tors and determinants (http://www.hc-sc.gc.ca/‡,QGLDQDQG1RUWKHUQ$IIDLUV&DQDGD ,1$& maintains a number of Aboriginal databases and www.ainc-inac.gc.ca/pr/index_e.html); Planning and Information Research ‡3URYLQFLDODQGWHUULWRULDOKHDOWKPLQLVWULHVFROOH� 4;怅瀀0services (www.hc-sc.gc.ca/hcs-sss/delivery-pres-‡1XPHURXVVWDWLVWLFVDUHDYDLODEOHIURP (www.statcan.ca), including com-�

7 87;3URYLQFLDODQG
87;3URYLQFLDODQGWHUULWRULDOVWDWLVWLFDODJHQFLHVSU� 5; vide a wide range of statistics and reports (www.vs.gov.bc.ca/contact/vs_provinces.html); and‡1$+2SURYLGHVKHDOWKLQIRUPDWLRQUHSRUWVRQits web site (www.naho.ca).data; that is, it has not been previously organized, analyzedor interpreted for health-related purposes. ‡1XUVLQJVWDWLRQVRUKHDOWKFHQWUHV VWDWLVWLFV‡$GPLQLVWUDWLYHGDWDIURPFRPPXQLW\KHDOWK‡7UHDWPHQWFHQWUHV VWDWLVWLFV ‡&RPPXQLW\PHHWLQJVIHDVWVFXOWXUDOHYHQWVetc. (frequency, number of participants);‡6FKRROV GURSRXWVWDWLVWLFVDEVHQWHHLVP DQGCommunity-based health research (NEW DATA).ResearchWhat is research?Research is an organized and systematic way of find-questions. Without a question, research has no SYSTEMATIC: there is a definite set of proce-dures and steps which you will follow. There are ways done in order to get the most accurate results; ‡25*$1,=('WKHUHLVDFOHDUVWUXFWXUHRUPH‡),1',1*$16:(56WKLVLVWKHJRDO

8 RIDOOresearch. W
RIDOOresearch. Whether it is the answer to a simple times the answer is no, but it is still an answer. research. Although it might seem a bit Secondary researchAlso known as desk research or a literature review, It brings you up-to-date with the most currentIt allows you to see the bigger picture It may show you new ways to interpret an /HDUQLQJDERXWRWKHUUHVHDUFKPHWKRGVPLJKW ‡,WKHOSV\RXWRHQVXUHWKDW\RXUUHVHDUFKTXHVthan primary research. In the past, it was difficult to library. Now, there is so much information available DFRPSXWHU*RRGVRXUFHVIRU)LUVW1DWLRQV$ERULJLQDOor community health research are described below.Where can I find health research? Although health research can be Journal of Aboriginal HealthNational Aboriginal Health Organization (http://www.naho.ca/english/journal.php); Pimatziwin: A Journal of Aboriginal and Indig-versity of Alberta (http://www.pimatisiwin.com/);by the Canadian Public Health Association and health planning (http://www.cpha.ca/english/Canadian Medical Association Journalgood articles on First Nations and Aboriginal health (http://www.cmaj.ca/);Health Promotion Practice,‡7KH$VVHPEO\RI)LUVW1DWLRQV+HDOWKDQGcorresponding Health Policy Areas (http://www.afn.ca/article.asp?id=103).-RXUQDOV�

9 003;5HODWHGWR7UDGLWLRQDO
003;5HODWHGWR7UDGLWLRQDODQG1DWXUH%DVHG0HGLFLQHEthnobotany Research and Applications:http://www.ethnobotanyjournal.org/ Phytotherapy Research: http://ca.wiley.com/WileyCDA/WileyTitle/productCd-PTR.html http://www.liebertpub.www.haworthpress.com/store/product.asp?sku=J044 Evidence-based Complementary & Alternative Medicine:http://ecam.oxfordjournals.org/ http://www.http://www.herbalists.on.ca/journal/back.html http://abc.herbalgram.org/site/ http://www.herbquarterly.com/ http://www.phytotherapists.org/journal.htm http://www.medherb.com/MHHOME.SHTML International Journal of Phytotherapy & Phytophar- http://www.accessmylibrary.com/coms2/http://www.alternative-therapies.com/at/index.The Journal of Alternative and Complementary http://www.liebertpub.com/publication.Ethnobotany Research and applications: http://www.botany.hawaii.edu/era/default.htm (free online journal) http://www.nhaa.org.au/index.php?option=com_content&view=secProtocol Journal of Botanical Medicine: http://www.http://www.explorejournal.com/ Various departments ‡+HDOWK&DQDGD )1,+% RIIHUVUHSRUWVDQGparticular concern to First Nations (http://www.‡7KH3XEOLF+HDOWK$JHQF\RI&DQDGDLVDJRRGwww.phac-aspc.gc.ca/publications_e.html#a); ‡3URYLQFLDOWHUULWRULDOUHJLRQDODQGWULEDO�

10 3;them directly. There are excellent
3;them directly. There are excellent on-line databases for health and/or Aboriginal health research. give you access to a large amount of information specifickeywords (e.g. diabetes). The only limitationofdatabases is that you will find references to articles/(however, many articles can be sent by email for a ‡$ERULJLQDO+HDOWK&ROOHFWLRQDQG,QIRUPDWLRQaccess to the librarys catalogue, as well as www.umanitoba.ca/libraries/units/health/aborigi-‡7KH1DWLYH+HDOWK+LVWRU\DQG1DWLYH+HDOWKResearch databases are provided by the Univer-sity of New Mexico Health Sciences Centre. The and it will send them to you (electronically) free of charge (http://hsc.unm.edu/library/nhd/index.cfm).And last but not least, dont forget about the FNC,NAHO! We have a growing collection of research and www.naho.ca/firstnations/english/welcome_page.php, www.naho.ca/english/publications.php.Primary research to answer a specific research question or shed light munity, you are likely planning to do primary research. Quantitative and qualitative research produces differ-‡LQ(OGHUVUHSRUWORQHOLQHVVDQGGHSUHVVLRQ‡RISDUHQWVUHSRUWWKDWWKH\IHHGWKHLUFKLOdren a healthy diet; or,‡RIZ

11 RPHQRYHUDJH�
RPHQRYHUDJHKDYHQHYHUEHHQscreened for breast or cervical cancer. Quantitatives�$ATA�COMES�FROM�RECORDS �SURVEYS ��QUESTIONNAIRESs�2ESULTS�ARE�EXPRESSED�s�2ESULTS�ARE�MEASURs�2ESULTS�ARE�SPECIFIC��FOCUSEDs�/UTCOME�ORIENTEDs�5NDERSTANDING��CALCULATIONQualitatives�$ATA�COMES�FROM�INs�2ESULTS�ARE�NOT�NUMERICAL �BUT�EXPRESSED�AS�WORDSs�2ESULTS�ARE�DESCRIPTIVEs�2ESULTS�TEND�TO�BE�BROADER �OPEN ENDEDs�0ROCESS�ORIENTEDs�5NDERSTANDING�BASED�ON�PEOPLES�VIEWS �KNOWLEDGE �AND�EXPERIENCES ‡0DQ\(OGHUVVD\WKDWWKH\DUHORQHO\EHFDXVH‡6RPHSDUHQWVVD\WKDWWKH\ZRXOGOLNHWRIHHGtheir children a healthy diet, but they cant afford to buy healthy foods; or,‡0RVWZRPHQVDLGWKDWWKH\GRQ·WIHHOFRPIRUWQuantitative data is an effective way of assessing and measuring health status in your community. Qualitative dat

12 a can reveal why people behave a certain
a can reveal why people behave a certain way, or how they feel about health issues. Together, both types health status, but also of your communitys hopes and How is research done?'HYHORS5HVHDUFK4XHVWLRQVYou probably already have a topic (e.g. childhood specifically what you want to know. Formulating your How many children in our in your community, your question might be: What are where, so that you dont duplicate efforts. Even if there issue in your community, learning about similar re-'HYHORSSULPDU\UHVHDUFKPHWKRGVDQGWRROV‡6XUYH\VDQGSROOV‡$GPLQLVWUDWLYHGDWD HJH[WUDFWLQJLQIRUPDWLRQ‡,QWHUYLHZVDQG‡)RFXVJURXSVRUWDONLQJFLUFOHVThe research methods that you choose will largely what are the causes of childhood munity. Measurements are expressed as numbers or Or, you might decide that interviewing health care staff your research would be quantitative. A combination of different angles. You can also use one method to refine another. For example, many researchers hold focus Please refer to the FNCs Research Tool Kit: Under-standing Researchsion of research methods and tools. Additional sources Try to conduct the data-gathering phase of the project 5. Analyze the data‡,GHQWLI\LQJ&#x

13 0003;WKHPRVWFRPPRQ�
0003;WKHPRVWFRPPRQLVVXHVQHHGVEDVHGTurning numbers into rates, percentages, or aver-ages; numbers often dont mean much on their own, so they have to be expressed as a proportion of a total. This also allows you to compare your ‡8VLQJJUDSKVDQGFKDUWVWRVKRZSDWWHUQVWKLVLVusually more effective in passing on information ‡,GHQWLI\LQJFRPPRQWKHPHVEDVHGRQWUDQVFULSWV‡&RPELQLQJVLPLODUUHVSRQVHVDQGRUJDQL]LQJ‡([DPLQLQJKRZWKHUHVXOWVGLIIHUEHWZHHQJURXSVof respondents (e.g. by gender, age group, etc.); ‡3XOOLQJRXWJRRGFOHDUTXRWDWLRQVWRVXSSRUWWKH6. Prepare the reportA good report is as important as good data. It is the funders. A research report should always include the ‡6WDWHPHQWRIUHVHDUFKTXHVWLRQREMHFWLYH‡'HVFULSWLRQRIUHVHDUFKPHWKRGVLQFOXGLQJDQ\‡'HVFULSWLRQRIWKHQDWXUHDQGVRXUFHRIGDWDWKDW‡([SODQDWLRQRIKRZGDWDZDVDQDO\]HGDQG�

14 f;‡,QWHUSUHWDWLRQ
f;‡,QWHUSUHWDWLRQDQGUHVXOWV6KDUHWKHUHVXOWVmembers. This step is referred to as verification of findings. This step will allow you to correct any mis-‡5HSRUWV‡)DFWVKHHWVIO\HUVOHDIOHWV‡3UHVHQWDWLRQVWRPHHWLQJVRUFRPPXQLW\IRUXPV‡5DGLRRU79LQWHUYLHZV‡$UWLFOHVLQFRPPXQLW\QHZVSDSHUV‡3UHVHQWDWLRQVDWFRQIHUHQFHVDQG‡:RUNVKRSVHow can research results improve community health?*HQHUDOO\UHVHDUFKDORQHLVQRWHQRXJKWRLPSURYH1.Define the desired impact of the information 2.Identify the target groups for example, 3.Identify go-between people or groups that example, health care staff, parents, community 4.Develop the message how can the informa-5.Decide on the best format for communication, such as a video, meeting or a flyer.childhood asthma, lets say that your research revealed ated to address this problem. Any health program activities, outcomes and indicators. The table below Use of research results: a success story)N� �RESEARCHERS�AT�+AHNAWAKE�&IRST�.ATION�FOUND�HIGH�R

15 ATES�OF�DIABETES�IN
ATES�OF�DIABETES�IN�THE�COMMUNITY�AND�UNHEALTHY�DIETARY�PATTERNS�4HEY�PUBLICIZED�THE�RESULTS�IN�ONE HOUR�SESSIONS�FOR�VARIOUS�COMMUNITY�GROUPS�AND�DURING�A�TALK�SHOW�ON�THE�LOCAL�RADIO�STATION�4HE�RESULTS�WERE�DRAMATICs�4HE�NUMBER�OF�PEOPLE�SHOWING�UP�FOR�DIABETES�SCREENING�INCREASEDs�4HE�DIETICIAN�WAS�SWAMPED�WITH�PEOPLE�SEEKING�ADVICE�ON�WEIGHT�LOSS �DIET�CHANGE �AND�EXERCISE�AND s�4EACHERS�AT�THE�LOCAL�SCHOOLS�BANNED�JUNK�FOOD�AND�STARTED�A�DAILY�EXERCISE�PERIOD�FOR�STAFF�AND�STUDENTS7DEOH²(OHPHQWVRI3URJUDP3ODQQLQJ 4O�DECREASE�THE�INCIDENCE�OF�RISK�FACTORS�ASSOCIATED�WITH�CHILD"Y�$ECEMTO�REDUCE�PIED�BY�CHILDREN� �)NSPECTIONS�OF�BY�CHILDREN�TO�A�HOME�REPAIR�PROGRAM�TO�

16 00;REMOVE�MOULD�AND�
00;REMOVE�MOULD�AND�PREVENT�RECURRENCE2EDUCTION�IN��OCCUPIED�BY�CHILDREN�BY�$ECEMBER�4HE�PERCENTAGE�DECREASE�IN�DREN�WITH�MOLD�IssueGoal Objectives ActivitiesOutcomesIndicators Public Health Research and Practiceto individual patients). We will be discussing some key ‡+HDOWKSURWHFWLRQsafe food and water, control of infections dis-‡+HDOWKVXUYHLOODQFH‡'LVHDVHDQGLQMXU\SUHYHQWLRQ‡3RSXODWLRQKHDOWKDVVHVVPHQWing to more effective services and policies; and‡'LVDVWHUUHVSRQVHters, for the health sector and society at large.Community health planning is a smaller scale ver-sion of public health. This section will provide a basic research: indicators, surveillance and epidemiology. First, lets look at the very first phase in the long-term Community Health Needs Assessment A Community Health Needs Assessment (CHNA) is process for identifying your communitys health needs and resources in an organized way. It involves the collection, organization and analysis of a broad range Conducting a CHNA is the first step in the Health Services Transfer process. Whether or not your commu-CHNA is an important step toward putting First Nations in charge of planning and delivering health services that baseline informatio

17 n about your communitys collec-A CHNA t
n about your communitys collec-A CHNA typically gathers and reports the following ‡GHPRJUDSKLFV HJQXPEHUVDQGDJHVRIFRP‡WKHHOHPHQWVWKDWPDNHXS\RXUFRPPXQLW\‡WKHNLQGVDQGOHYHOVRIKHDOWKLVVXHVPHPEHUV‡WKHFLUFXPVWDQFHVWKDWDUHIDFWRUVRIWKHVHKHDOWK� 0;0‡WKHUHVRXUFHVWKDWDUHDYDLODEOHWRDGGUHVVWKHVH‡WKHFRPPXQLW\PHPEHUVWKDWKDYHWKHPRVWXU‡WKHEHVWZD\WRPHHWWKHQHHGVRIFRPPXQLW\‡WKHWUDLQLQJQHHGVRIKHDOWKFDUHSHUVRQQHOWRKHO� 5;00A CHNA addresses multiple research questions about health and health-related issues of a community, and lar aspect of health, the CHNA is intended to provide a comprehensive snapshot. The results of the CHNA can the Transfer process and CHNA. 7KHUHVXOWVRID&+1$FDQEHXVHGWRLGHQWLI\KHDOWKSULRULWLHVUHVRXUFHVDQGJDSV7KLVIDFLOLWDWHVthe planning o

18 f health programs that meet commu-Rememb
f health programs that meet commu-Remember, the collection and use of health data should be an ongoing process. The path to health and wellness information needs to be collected day by day, as well as planning how that information should be organized, Indicatorsor what proportion of people in your community, are over time to assess progress. Whereas the CHNA is a (EALTH�#ANADA�IS�REQUIRED�TO�REPORT�TO�0ARLIAMENT��ON�HEALTH�OUTCOMES�AND�TO�OFFICIALS�AT�THE�FEDERAL�PROVINCIALTERRITORIAL�LEVELS�)T�REPORTS�ON��CATEGORIES�OF�INDICATORS�REFERRED�TO�AS�THE�0)2# �0ERFORMANCE�)NDICATOR�2EVIEW�#OMMITTEE �)NDICATORSn�,IFE�EXPECTANCYn�)NFANT�MORTALITYn�,OW BIRTH�WEIGHTn�3ELF REPORTED�HEALTHn�#HANGE�IN�LIFE�EXPECTANCYn�)MPROVED�QUALITY�OF�LIFEn�2EDUCED�BURDEN�OF�DISEASE�AND�ILLNESSn�7AITING�TIME�FOR�KEY�DIAGNOSTIC�AND�TREATMENT�SERVICESn�0ATIENT�SATISFACTIONn�(OSPITAL�RE ADMISSIONSn�!CCESS�TO�

19 0;�
0;�FIRST�CONTACT�HEALTH�SERVICESn�(OME�AND�COMMUNITY�CARE�SERVICESn�!DEQUACY�OF�PUBLIC�HEALTH�SURVEILLANCE�AND n�(EALTH�PROTECTION�AND�PROMOTION�ACTIVITIEShealth status (e.g. diet, smoking, access to health ser-community, it is helpful to understand the relationship generally understood as one of cause and effect. This )LJXUH3RSXODWLRQ+HDOWK0RGHwestern models tend to highlight cause and effect, First tivity. This is evident in the health determinants model (Figure 3) used in the AFN document, PopulationTools and Supports IndividualFactorsCollectiveFactors )LJXUH)LUVW1DWLRQV+HDOWKnot always effective for First Nations because Cana-First Nations communities (e.g. water quality). The The AFN health policy and planning model understanding health and well-being. There are several and unique indicators. For example, the Aboriginal between the Mohawk Council of Akwesasne, Little ‡1XPEHURIKXQWHUVLQWKHFRPPXQLW\‡&DWFKUDWHRIXQJXODWHV HJGHHU ‡8QJXODWHSRSXODWLRQ‡1XPEHURIFRPPXQLW\RUJURX

20 SFHOHEUDWLRQV‡&#x
SFHOHEUDWLRQV‡6L]HRIIRUHVWDUHD ‡([WHQWDQGW\SHVRIIRUHVWXVDJH‡1XPEHURIGUXPVLQFRPPXQLW\‡1XPEHURIGUXPPLQJRFFDVLRQVSHU\HDUDQG‡1XPEHURIUHOLJLRXVVSDFHV HJFKXUFKHVVZHDWlodges) in community.Indicators can help you to assess and monitor the health of your community and the effectiveness of that most health effects do not occur randomly, but are tors. Thus, the objective of epidemiological studies is Epidemiology has led to major advances in our under-diseases like cancer, heart disease and diabetes. Also, types of programs are effective in reducing diseases, LGHQWLILHGKHDOWKHIIHFW/HW·VVD\WKDW*URXS$KDVKLJKUDWHVRIGLDEHWHVZKLOH*URXS%KDVDYHUDJHUDWHV� 1;က07KHsignificant differences in glucose tolerance. However, *URXS$WHQGHGWRFRQVXPHOHVVFRXQWU\IRRGEXWand sugar. Therefore, it could be concluded that poor *URXS$ Social&Environmental )LJXUH3URSRVHG)LUVW1DWLRQV&#x

21 0003;+ROLVWLF3ROLF\DQG&#
0003;+ROLVWLF3ROLF\DQG3ODQQLQJ� 3;� motionalpecialMentalhysical apacity/NegotiationsCollective&IndividualRightsFiscalRelations/AccountabilitySelfGovernment/JurisdictionelationswithothercommunitiesRelationswithformalinstitutionsRelationswithinthecommunity ridging Linkages Bondingnvironmentalocialulturalconomic Youth EnvironmentalOn / Awayfrom ReserveCareJusticeDevelopmentLearning& Resources& CultureServices MedicineWheelFirst Nations Self-Government tory purposes. In reality, epidemiology uses math-ematics and statistics to demonstrate cause and affect quire fairly large study samples in order to generate conclusions. Simply put, with larger numbers, it is less However, it is possible to conduct simple quantitative Barriers to Community Health Developmentindividuals and groups to these ends. Unfortunately, or regional capacity, and resource fragmentation and scarcity. Some of these barriers are specific to First trol, Access and Possession (OCAP). Other barriers A study of community participation in a proposed self-help water project in West Africa, Ambe J. Njoh ment. These factors can be discussed under two broad factors located within the beneficiary community. Paternalistic posture of authoritiesinduced projects is the tendency for outside bureaucrats Prescriptive role of the governmenttion is like most activities in society, very political. Frequently, a governments interest in community participation has goals that differ from those of the beneficial community.

22 For the government, it is often tions in
For the government, it is often tions in society and ensuring the silence of the poor.projects to the exclusion of their failures. This means, Some members of a projects beneficiary communi-from the project development process. Consequently, tives of the larger community or society. The challenge majority in the development process. Hard-issues, such as questions relating to technology, cussions on any given project. Consequently, questions relating to soft matters such as community participa-erment, effectiveness, and institutional development Intra/Inter-group conflictsresult from perceived or real differences in culture, language, or socioeconomic status. Ways to avoid populations should be planned for. Quite often, a local organization, almost always the dominant one in a beneficiary community, may monopolizedby a small and self-perpetuating communitys, interest.Excessive pressures for immediate resultslevel authoritieshave the tendency to overempha-size the importance of delivery (product),while ne-munity participation(process), particularly poverty 'LVLQWHUHVWZLWKLQEHQHILFLDU\FRPPXQLW\become involved. The urgent task for planners is suchunwillingness. In some cases, the cause of this problem may simply be thefailure of the govern-participation into the project design.In other cases, obstacles to effective community health programs and services that they may encounter.Surveillancevention and control. An effective surveillance system monitor specific public health

23 concerns. They are not related topics.
concerns. They are not related topics. The Public Health Agency of Canada injury, most types of cancers, cardiovascular and re-spiratory diseases, influenza, West Nile Virus and birth tential public health emergencies. Surveillance was of highly contagious diseases (e.g. TB) so they could increase in cancer rates in a certain area. This would terns as they emerge, so that health authorities can plan Provincial/territorial jurisdictions can use different communicable and chronic diseases, relying primar-federal and provincial/territorial privacy laws. How-ever, identifiable personal health information can be released to public health authorities if it relates to FHUWDLQLQIHFWLRXVGLVHDVHVWKDWSRVHDVHULRXVULVNWRHealth surveillance for First Nations is affected by jurisdictional issues. While most notifiable disease surveillance systems are maintained by provincial/ter-this situation can lead to a disconnect between sur-diseases and immunization. Regional FNIHB officesterritories record First Nations or even Aboriginal often difficult (if not impossible) to separate on and off-reserve data. their regions or communities, they should contact regional FNIHB offices.ties. The transfer process shifts these responsibilities organizations. The following passage describes some generally, as well as considerable diversity within the First Nations population. Therefore, addressing among First Nations is a complex task. The task is own unique publ

24 ic health situation, it will be impor-sp
ic health situation, it will be impor-specific to the extent possible. Therefore, this raises and regional/Treaty First Nations jurisdictions, and resources. The AFN recently developed a policy docu-ment entitled First Nations Public Health: A Frame-Communities (2006), which argues for a distinctive h4HE�GATHERING�OF�INFORMATION�AND�ITS�SUBSEQUENT�USE�ARE�INHERENTLY�POLITICAL�)N�THE�PAST �!BORIGINAL�PEOPLE�HAVE�NOT�BEEN�CONSULTED�ABOUT�WHAT�INFORMATION�SHOULD�BE�CO� 4;쀄쀄倄々䀄倄䀀쀀�WHO�SHOULD�GATHER�THAT�INFORMATION �WHO�SHOULD�MAINTAIN�IT �AND�WHO�SHOULD�HAVE�ACCESS�TO�IT�4HE�INFORMATION�GATH ERED�MAY�OR�MAY�NOT�HAVE�BEEN�RELEVANT�TO�THE�QUESTIONS �PRIORITIES�AND�CONCERNS�OF�!BORIGINAL�PEOPLES�"ECAUSE�DATA�GATHERING�HAS�FREQUENTLY�BEEN�IMPOSED�BY�OUTSIDE�AUTHORI TIES �IT�HAS�MET�WITH�RESISTANCE�IN�MANY�QUARTERSvThe principles of Ownership, Control, Access and Possession (OCAP) emerged in respons

25 e to First Nations concerns about the n
e to First Nations concerns about the negative aspects of externally driven research. These include:‡ODFNRIPHDQLQJIXOFRPPXQLW\LQYROYHPHQWLQ‡ODFNRILQGLYLGXDODQGFRPPXQLW\EHQHILWIURP‡ODFNRILQIRUPHGFRPPXQLW\FRQVHQW FRPPXQL‡UHVHDUFKDJHQGDVGLFWDWHGE\SHUVRQDORUDFD‡ODFNRIFRPPXQLW\RZQHUVKLSRIGDWDDQGUH‡FRPPXQLW\VWLJPDWL]DWLRQDQGVWHUHRW\SLQJRI‡ODFNRIUHVSHFWWRZDUGV)LUVW1DWLRQVFXOWXUHDQGOCAP, as we call it today, was originally expressed As a result of height-of information, the OCAP principles were developed background and significance of OCAP, please refer to the FNCs OCAP: Ownership, Control, Access and OCAP is self-determination applied to research.The OCAP principles are defined as follows:information. The principle states that a community The principle states that a community &RQWURO The aspirations and rights of First Nations data. The principle of control asserts that First Nations Part II Transfer of Health Services to the Control of First Nations munities, regardless of where it is currently held. The munities and organizations to manage and make d

26 eci- While ownership identifies the rela
eci- While ownership identifies the relation-possession or stewardship is more literal. Although protected. When data owned by one party is in the pos-session of another, there is a risk of breach or misuse.What does OCAP mean for First Nations health research and information?With respect to health research that is proposed or initi-ated by an external partner, there are steps that your community can take to ensure that OCAP principles are respected. These include:‡(VWDEOLVKDUHVHDUFKFRPPLWWHHLQ\RXUFRPPXnity to ensure careful and consistent consider-‡,GHQWLI\FRPPXQLW\SULRULWLHVIRUKHDOWKUHVHDUFK‡'HYHORSDFRPPXQLW\FRGHRIUHVHDUFKHWKLFVRU‡,QVLVWRQPHDQLQJIXOSDUWLFLSDWLRQLQDOODVSHFWVOCAP are described in more detail in the FNC docu-OCAP: Ownership, Control, Access and Posses- (2007). The FNCs Considerations and Templates Ethical Research PracticesThe application of OCAP principles to health informa-during the course of health care delivery. This informa-uals written consent, First Nations communities or agency or authority that holds it. However, it remains To further complicate matters, the situation differs through the delivery of health care in that community. However, health professionals may still be obligated in that community.

27 tion for important, legitimate purposes
tion for important, legitimate purposes. However, many Building First Nations Health Research Capacityh#APACITY�DEVELOPMENT�IS�MORE�THAN�JUST�COMPUTER�TRAIN ING�AND�KNOWLEDGE�AND�USE�OF�THE�)NTERNET�IT�IS�BUILDING�CAPACITY�IN�SELF DETERMINATION�AND�GOVERNANCE�IN�HEALTH�CARE�THAT�BUILDS�UPON�AN�INDIVIDUAL�AND�COMMUNITY�DEV ELOPMENT�PROCESS�)T�IS�DEVELOPING�AND�APPLYING�ABILITIES�TO�GOVERN�AND�MANAGE �SOLVE�PROBLEMS �RESPOND�TO�NEW� SITUATIONS �MAKE�INFORMED �EVIDENCE BASED�DECISIONS ��TO�STRATEGICALLY�PLAN �TO�IDENTIFY�AND�SET�PRIORITIES �TO�EVALUATE �TO�EFFECTIVELY�AND�EFFICIENTLY�MANAGE�RESOURCES�HUMAN�AND�FISCAL �AND�TO�TAKE�RESPONSIBILITY�FOR�THE��SUCCESS�OR�FAILURE�OF�HEALTH�INTERVENTIONSvtions cultures or aspirations. To put it mildly, this has been bad for our health. We now know that control In order to be able to plan ef

28 fective health services, First Nations a
fective health services, First Nations also need to have the capacity to gather, record, store and use health information. We need to h#REATING�AND�SHARING�KNOWLEDGE�THAT�AUTHENTICALLY�REP RESENTS�WHO�YOU�ARE�AND�HOW�YOU�UNDERSTAND�THE�WORLD�IS�INTEGRAL�TO�THE�SURVIVAL�OF�A�PEOPLES�IDENTITYvinformation is generally poor. First Nations-specific than 20,000 individuals living on-reserve. It is overseen Health, with strict adherence to the OCAP principles. The AFN states that: living conditions in Canada. As such, the RHS ernance. This process can and should involve commu-nity level health information and planning. That is the increase First Nations capacity to meaningfully par-Research Ethics and Privacying human beings. Communities may conduct their own external partners. Either way, it is important for First being researched. They can be divided into two Respect for individualsknow what they are being asked to do, what the infor-used but are not always necessary. 2. Protection of privacy and confidentialitymunity privacy, discussion of sensitive or painful perhaps most importantly, the potential for research 4. Valid research designRespect for Communitiesment. This has meant considering issues such as:‡+RZUHVHDUFKVKRXOGSURWHFWFRPPXQLWLHV‡&RPPXQLW\FRQVHQW&#

29 x0003;WRUHVHDUFK‡
x0003;WRUHVHDUFK‡&RPPXQLW\FRQWURORYHUWKHUHVHDUFKSURFHVV‡&RPPXQLW\FRQWURORYHUKRZUHVHDUFKUHVXOWV‡&RPPXQLW\FRQWURORYHUKRZUHVHDUFKUHVXOWVConsent and secondary researchmay be part of another organizations records, such as threat to individual confidentiality. However, there is ers. These agreements usually outline how the research Research Ethics Boards organization that does research on a regular basis such as a health department, a hospital, or a university. those organizations, or who is working with them on a contact the organizations clients). Some of the major Ethical Review in First Nations apply to any research done by the community, or by outside organizations working with the community. For Kahnawake Schools Diabetes Prevention ProjectWatchcome together to form research committees. The Nooj-mowin Teg Health Access Centre on Manitoulin Island Guidelines for Ethical Aboriginal Research in the Manitoulin Areaments are available on-line; see Additional Resources, Services Commission and the Assembly of Manitoba Privacy and Health Informationunreasonable interference in ones private life and the tion is afforded a higher degree of privacy protection than many other kinds of personal information. This is However, it is important to remember that there are worthwhile and legitimate purposes for sharing per-son

30 al health information. These include:1)D
al health information. These include:1)Direct patient care: Personal health information personnel (e.g. nurse, physician, surgeon) in or-2)Payment for health services: An insurance com-3)Administration of health systems: Administra-services, evaluate the effectiveness of services 4)Public (or community) health research and plan-often be sufficient for the purpose of the activity. For ports or publications. Usually, results are aggregated 22 Who collects personal health information,and why? Example:#ANCER�#ARE�/NTARIO�COLLECTS�PERSONAL�HEALTH�IN FORMATION�0() �FOR�MANAGEMENT�AND�PLANNING�PURPOSES�FROM�HEALTH�INFORMATION�CUSTODIANS�WHO�ARE�DIRECTLY�INVOLVED�IN�THE�CARE�AND�TREATMENT�OF�PATIENTS�#ANCER�#ARE�/NTARIO�USES�THE�INFORMATION�TO�PLAN �FUND�AND�REPORT�ON�PERFORMANCE�OF�THE�CANCER�SYSTEM�&OR�EXAMPLE�DATA�ARE�USED�TOs��CALCULATE�SURVIVAL�RATESs�REPORT�WAIT�TIMES�FOR�RADIATION�AND�CHEMOTHERAPYs�REPORT�ON�THE�QUALITY�OF�CANCER�SERVICES�IN�/NTARIOs�POINT�O

31 UT�WHERE�ACTIONS�CA
UT�WHERE�ACTIONS�CAN�BE�TAKEN�TO�IMPROVE�CAREs�REIMBURSE�HOSPITALS�FOR�SPECIFIC�CANCER�DRUGSs�ESTIMATE�CANCER�INCIDENCE�AND�DEMAND��NEED�FOR�SERVICESs�MANAGE�THE�/NTARIO�"REAST�3CREENING�0ROGRAMs�ADVISE�THE�-INISTRY�OF�(EALTH�AND�,ONG 4ERM�#ARE�ON�CANCER�ISSUES�AND s�SUPPORT�RESEARCH�BY�##/�BEHAVIOURAL�SCIENTISTS�AND�RESEARCH�ASSOCIATESthings as a persons clinical history and use of health health, such as a persons education, employment, and income level. The Canadian Institutes of Health Re-personal health information. The following guidelines 1)Determine the research objectives and justify 2)Limit the collection of personal data;3)Determine if consent from individuals is 4)Manage and document consent; 5)Inform prospective research participants 6)Recruit prospective research participants;7)Safeguard personal data; 8)Control access and disclosure of personal 9)Set reasonable limits on retention of personal 10)Ensure accountability and transparency in the The First Nations Contextcollective privacy. Collective privacy is unique because Nations Peoples. The principles of OCAP (see page 17)‡7K

32 HFRQILGHQWLDOLW\RI�
HFRQILGHQWLDOLW\RISHUVRQDOKHDOWKLQIRUPD‡7KHDFFXUDF\RILQIRUPDWLRQWKDWLVXVHGWRPDNH‡7KHXVHRILQIRUPDWLRQIRUVHFRQGDU\SXUSRVHV‡3URWHFWLRQDJDLQVWQHJDWLYHSRUWUD\DOVVWLJPDWL‡&RQILGHQWLDOLW\RIWUDGLWLRQDOFXOWXUDOSUDFWLFHV� 0;0‡8VLQJKHDOWKGDWDDQGLQIRUPDWLRQIRUSXUSRVHVthat may not be relevant to communities priori-territorial privacy laws apply. So, identifiable personal out individual consent. However, community level government. This is because the Access to Information that is within the governments control, if they ask.health professionals must comply. Also there are health information acts in Alberta, Manitoba, Ontario and protection and use of personal health information. This is especially important if your community is consider- Additional Resourcesinformation on specific topics, we encourage you to consult the Internet resources listed below. We have selected 'HYHORSLQJD3URSRVDOGuide for Writing a Funding Proposal: www.learnerassociates.net/proposalBeginners Guide to the Research Proposalwww.ucalgary.ca/md/CAH/research/res_prop.htm'HVLJQLQJ6XUYH\VDQG4XHVWLRQQDLUHVTypes of Surveys: http

33 ://www.socialresearchmethods.net/kb/surv
://www.socialresearchmethods.net/kb/survtype.phpQuick Tips Survey Design: http://oir.olin.edu/assessment/docs/qt1.pdfSurvey and Questionnaire Design: http://www.statpac.com/surveys/Conducting Interviews and Focus GroupsSome Tips for Running a Good Focus GroupTips for Designing Data Collection Instruments: http://www.idrc.ca/en/ev-28258-201-1-DO_TOPIC.htmlCommunity Health Needs AssessmentCommunity Health Needs Assessment: A Guide for First Nations and Inuit Health AuthoritiesKWWSZZZKFVFJFFDIQLKVSQLÀQDQFHDJUHHDFFRUGUHVFHQ� 5;瀅倄耀Community Health Needs Assessment Guidelines: http://www.gov.mb.ca/health/rha/chnag.pdfFirst Nations Research Ethics*XLGHOLQHVIRU(WKLFDO$ERULJLQDO5HVHDUFKLQWKH0DQLWRXOLQ$UHDKWWSZZZQRRMPRZLQWHJFDGHIDXOWMikmaq Ethics WatchKahnawake Schools Diabetes Prevention Project Code of Research Ethics: http://www.ksdpp.org/code.html Glossary$JJUHJDWHGDWDincome as opposed to each individuals income).&KURQLFGLVHDVH A disease that is ongoing (lasts for more than three months) or recurrent, and usually can not be cured. Chronic diseases are not caused by infection, and are not communicable (e.g. asthma, cancer, diabetes). A disease which can be transmitted from person-to-person through direct or indire

34 ct con- Agreement. In research, informe
ct con- Agreement. In research, informed consent means that a person or group has been provided with Facts, observations or measurements that have been recorded in some way.identify an individual (e.g. address, social insurance number, etc.), have been removed. Most surveillance systems The study of health and factors that affect health in groups or populations.$VHWRIYDOXHVZKLFKGHÀQH´ULJKWµDQG´ZURQJµ5H� 5;怄耄䀅倄怄뀀〄者瀄뀄쀀 The range of personal, social, economic and environmental factors that determine or +HDOWKSURPRWLRQ Health promotion is the process of enabling people to increase control over, and to improve +HDOWKSURWHFWLRQ Actions that protect against health and safety risks. Research (providing evidence), Measurements and/or descriptions of different aspects of health for a community or group, such as infant mortality, disability or chronic disease rates. As assumption that is made as a basis for further investigation or research. It is similar to a research Measurements, signs or gauges. Health indicators measure different aspects of health within a population.'DWDWKDWKDYHEHHQUHFRUGHGFODVVLÀHGRUJDQL]HGUHODWHGRUmeaning emerges. The average number of years a person would live if mortality rates did not change./RQJLWXGLQDOUHVHDUFK0RUWDOLW\&#x

35 0003; RUGHDWK �
0003; RUGHDWK UDWH7KHSURSRUWLRQRIDSRSXODWLRQWKDWGLHVLQDVSHF� 4;쀌耄瀀々〄者倄쀅 瀁ကSHU\HDU&DXVHVSHFLÀFPRUWDOLW\UDWHV HJVXLFLGHUDWH� 0;쀀〄䀅င瀀personal details that indirectly reveal their identity.3ULPDU\UHVHDUFK The collection of new data or information. An approach to health that aims to improve the health of an entire population. Population The science and practice of protecting and improving the health of communities or groups 5HVHDUFK$QRUJDQL]HGDQGV\VWHPDWLFZD\RIÀQGLQJDQVZHUVWRTX� 4;者怅瀄쀅 စ怀 A factor that is associated with increased risk of disease or ill health. It is important to note that a risk A small part or quantity which represents the whole. In health research and statistics, a study sample UHIHUVWRDJURXSRISHRSOHVHOHFWHGIURPDODUJHUSRSXODWLRQFRPPXQLW\ UDQGRPO\RUE\VSHFLÀFFULWHULD ZKRparticipate in a research project. The conclusions drawn about the sample group can be generalized to the population/community at large, without having to actually study the entire populatio

36 n/or community. 6HFRQGDU\UHVHDU
n/or community. 6HFRQGDU\UHVHDUFK The analysis of existing information or previously conducted research about a 4XDOLWDWLYHUHVHDUFK4XDQWLWDWLYHUHVHDUFK The systematic collection, analysis, interpretation, and dissemination of health data in :DLWWLPHV The time between the decision to provide medical treatment, such as a surgical procedure, and when EndnotesRoyal Commission on Aboriginal Peoples, Report of the Royal Commission on Aboriginal Peoples, v.3, Gathering Strength(Ottawa: Ministry of Supply and Services, 1996). Retrieved from http://www�.ainc-inac.gc.ca/ch/rcap/rpt/gs_e.html (2006). Retrieved from http://www.statcan.ca/english/edu/pow-Public Health Data Standards Tutorial: Glossary of TermsRetrieved from www.phdatastandards.info/knowresources/tutorials/glossary.htm First Nations Public Health: A Framework for Improving the Health of Our People and Our Com- (Ottawa: Author, 2006), p. v.:DUUHQ5HJDQG*RUGRQ0XWWHU´0DUNHWLQJ+HDOWK5HVHDUFK,QIRUPMontour, Louis Tekaronhiake and Ann Celia Macaulay. Editorial: Diabetes mellitus and atherosclerosis: returning research results to the Mohawk community. Canadian Medical Association JournalProceedings of the Think Tank on the Future of Public Health in Canada (Calgary, June 2003). Cited in Assembly of First Nations, First Nations Public Health: A Framework for Improving the Health of Our People and Our Communities (Ottawa: Aut

37 hor, 2006), p. 9.Healthy Canadians: A Fe
hor, 2006), p. 9.Healthy Canadians: A Federal Report on Comparable Health Indicators 2002. Retrieved from http://www.hc-Public Health Agency of Canada, Towards a Common Understanding: Clarifying the Core Concepts of Population Health, . Retrieved Aug. 12, 2006 from http://www.phac-aspc.g.c.ca/ph-sp/phdd/docs/com-: A Health Determinants Perspective (Ottawa: University of Ottawa: Institute of the Environment, Mohawk Council of Akwesasne, Little Red River Cree Nation, Community Health Indicators: First Year of the Project, Final ReportFirst Nations Public Health: A Framework for Improving the Health of Our People Royal Commission on Aboriginal Peoples, p.4. &DWKU\Q*HRUJHRIWKH$VVRFLDWLRQRI,URTXRLVDQG$OOLHG,QGLDQVLVFUHGLWHGZLWKWKHRULJLQDODFURQ\P´2&$µ7KH´3µ 3RVrespect First Nations principles and protect their collective information. ,QXLW5HJLRQDO+HDOWK6XUYH\1DWLRQDO6WHHULQJ&RP� 5;쀅瀅瀄耄老က07KHQVXHVWKDW\HDUVRIZRUNRQWKH5+6KDGEURXJKWLQW� 5; 〄逅 怅者态က07KHThe initial RHS included the Inuit of Labrador and was titled the First Nations and Inuit Regional Longitudinal Health Survey. The 2002/03 RHS survey included First Nations on-reserve/communities only and is called the First

38 Nations Regional Longitu-GLQDO+H
Nations Regional Longitu-GLQDO+HDOWK6XUYH\7KH,QXLWKDYHRSWHGIRU,QXLWVSHFLÀFUHVOwnership, Control, Access and Possession (OCAP) or Self-Determination Applied to Research: A Critical Analysis of Aboriginal Research Practice and Some Options for Aboriginal Communities (Ottawa: National Aboriginal Health Organizations, 2005), pp. 1-2.Castellano, Marlene Brant, Ethics of Aboriginal Research. Journal of Aboriginal Health 1:1 (Ottawa: National Aboriginal Health Organization, 2004), p.109.First Nations Health Research and Information Acton Plan (Ottawa: Author, 2005), pp. 2-3.Partnership for Health Informatics/Telematics. :RUNLQJ*URXSSULYDF\FRQÀGHQWLDOLW\GDWDLQWHJULW\DQGVHFXULW\Background document (revised)Principles and Policies for the Protection of Personal Health Information at Cancer Care Ontario(Toronto: Author, 2005), p. 3.CIHR Best Practices for Protecting Privacy in Health ResearchRetrieved from http://www.cihr-irsc.gc.ca/e/29072.html#ValuesFirst Nations Public Health: A Framework for Improving the Health of Our People Bibliographyirst Nations Health Research and Information Acton Plan. Ottawa, ON: Author.First Nations Holistic Policy and Planning Model: A Health Determinants Ottawa, ON: Author.First Nations Public Health: A Framework for Improving the Health of Our Ottawa, ON: Author.Author.CIHR Best

39 Practices for Protecting Privacy in Heal
Practices for Protecting Privacy in Health Research.2WWDZD213XEOLF:RUNVDQG*RYHUQPHQW6HUYLFHV&DQDGDPrinciples and Policies for the Protection of Personal Health Information at Cancer Care Ontario. Toronto: Author.Brant Castellano, M. (2004). Ethics of Aboriginal Research. Journal of Aboriginal HealthNational Aboriginal Health Organization.Considerations and Templates for Ethical Research Practices.Aboriginal Health Organization. OCAP: Ownership, Control, Access and Possession. Ottawa, ON: National Aboriginal Health Organization. Ottawa, ON: National Aboriginal Health Organization.Ownership, Control, Access and Possession (OCAP) or Self-Determination Applied to Research: A Critical Analysis of Aboriginal Research Practice and Some Options for Aboriginal Communi-$GDSWHGIURPDSDSHUSUHSDUHGIRUWKH)LUVW1DWLRQ� 5;怀。쀅င逅 倅䀅瀄쀅 Q*RYHUQDQFH&RPPLWWHH$VVHPEO\RI)LUVWNations. Ottawa, ON: National Aboriginal Health Organization.Privacy Tool Kit: The Nuts and Bolts of Privacy. Ottawa, ON: National Aboriginal Health Organization. Ethics Tool Kit: Ethics in Health Research. Ottawa, ON: National Aboriginal Health Organization. Research Tool Kit: Understanding Research. Ottawa, ON: National Aboriginal Health Organization.Surveillance Tool Kit: Health Surveillance The Basics.Aboriginal Health Organ

40 ization. Healthy Canadians: A Federal R
ization. Healthy Canadians: A Federal Report on Comparable Health Indicators 2002.KSDPP Code of Research Ethics.Author. Retrieved from http://www.ksdpp.org/code.htmlMikmaw Ethics Watch (2000). Research Principles and Protocols. Sydney, NS: Mikmaq College Institute, Montour, L. T., and Macaulay, A. C. (1988). Editorial: Diabetes mellitus and atherosclerosis: returning research results to the Mohawk community. Canadian Medical Association Journal,Njoh, A. J. (2002). Barriers to community participation in development planning: lessons from the Mutengene Partnership for Health Informatics/Telematics (1997). Working Group 3: Privacy, confidentiality, data integrity, and security. Background document (revised).Public Health Agency of Canada (1996). Towards a Common Understanding: Clarifying the Core Concepts of A Discussion Paper. Retrieved from http://www.phac-aspc.g.c.ca/ph-sp/phdd/docs/commonPublic Health Data Standards Tutorial: Glossary of Terms.Retrieved from www.phdatastandards.info/knowresources/tutorials/glossary.htmResearch Review Working Committee (2003). Guidelines for Ethical Aboriginal Research in the Manitoulin Area. Little Current, ON: Noojmowin Teg Health Centre. Retrieved from http://www.noojmowin-teg.ca/default5.Royal Commission on Aboriginal Peoples (1996). Report of the Royal Commission on Aboriginal Peoples, v.3 Definitions. Retrieved from http://www.statcan.ca/University of Ottawa: Institute of the Environment, Mohawk Council of Akwesasne, Little Red River Cree Nation, First Year of the Pr