The “Survey of Choice” by First Nations in Canada!
Presentation to theWorkshop on Data Collection and Disaggregation on Indigenous Peoples
Permanent Forum on Indigenous Issues
United Nations Headquarter, New York, New York
January 19- 21, 2004
By:
Jane Gray, RN BScN, National Coordinator,
First Nations Regional Longitudinal Health Survey
Dr. Valerie Gideon, Director, First Nations Centre at the
National Aboriginal Health Organization (NAHO)
Ceal Tournier, Co-Chair, First Nations Information Governance Committee
Brian Schnarch, Research Analyst, First Nations Centre at the
National Aboriginal Health Organization (NAHO)
TABLE OF CONTENTS
Executive Summary. …………………………………………………………………………….4
The Beginning …………………………………………………………………………………….5
First Nations Historical Context ………………………………………………………………….6
The Past – Research on Aboriginal People. ……………………………………………………8
The Assembly of First Nations – The Story. …………………………………………………… 9
Royal Commission on Aboriginal Peoples -
Supporting First Nations Self-Determination and Self-Government ………………………… 10
What are the First Nations Principles of OCAP? ……………………………………………… 12
First Nations Regional Longitudinal Health Survey (RHS) – Our Story …………………….. 13
First Nations Policy Statement – RHS Code of Ethics ………………………………………...13
First Nations Regional Partners ………………………………………………………………….15
RHS – More Than Just a Health Survey………………………………………………………. 16
A Sample without Precedent ……………………………………………………………………. 17
RHS Data Collection Process …………………………………………………………………… 18
RHS Ethical and Privacy Review Process ………………………………………………………19
RHS Analysis, Interpretation and Dissemination Strategy 2003-04 ………………………… 21
RHS and First Nations Capacity Development …………………………………………………25
RHS Planning for Growth ………………………………………………………………………… 25
Closing Comments ……………………………………………………………………………….. 26
Appendix A – RHS 2003-04 Products …………………………………………………………... 27
Appendix B – Ethical Review of the FNRLHS 2002 …………………………………………… 30
Appendix C – RHS Mini-Update Data Collection Progress – December 15, 2003 ………... .31
References …………………………………………………………………………………………. 32
Executive Summary
The First Nations Longitudinal Regional Health Survey (RHS)[1] is currently being implemented by the First Nations Centre (FNC) at the National Aboriginal Health Organization (NAHO). The RHS has made a significant contribution toward achieving the goals outlined in the Royal Commission on Aboriginal Peoples Report (RCAP) in the area of research and self-determination. It has enhanced the capacity of First Nations in data collection processes and management.
Today the RHS is recognized as the “First Nations Survey of Choice” and has gained tremendous credibility among First Nations communities, leadership and academic scholars. Scientifically and culturally validated information is seen as crucial to health planning, advocacy and emerging areas of First Nations Governance. Information is now considered a health determinant and, therefore, access to information will contribute to the improvement in long-term health status of First Nation and its communities.
The FNIRLHS is more than “just another survey”. There was innovation in; data sharing protocol, research ethics, and appropriate questionnaire content for First Nations. As a First Nation process, there was strong support from many levels, from a high participation rate among individuals to formal mandates and support from regional and national bodies. Further, the FNIRLHS process has served as a “stepping stone” on the path toward the broader goals of increasing First Nations control, involvement and capacity in terms of data management, research, statistical analysis and related information processes.
The FNIRLHS information (1997) is the only current data available on First Nations on-reserve, and for the Inuit of Labrador, that has been validated by both the scientific community, and the First Nation leadership in Canada. The FNIRLHS data has proven valuable in determining current health priorities, gaps, and issues impacting First Nations on-reserve and is widely quoted in health publications including: A second Diagnostic on the Health of First Nations and Inuit People in Canada; Toward a Healthy Future, Second Report on the Health of Canadians; The Health of Canada’s Children; Heart and Stroke Foundation Journal; Canadian Journal of Diabetes Care; Canadian Dental Hygienist Journal; Canadian Medical Association Journal etc. It is anticipated that in the future, as First Nations develop their health infostructure and have the systems and staff in place to promote their research, demand for their data and products will soar.
RHS is in its second wave and has recently finalized the data collection phase for the RHS 2002-03. This wave has a larger sample size (28,405) along with a complex survey instrument that has been culturally validated by First Nations from a holistic perspective. The successfulness of the RHS model process can be seen in the results, the numbers speak for themselves. Over 82% of First Nations across Canada responded to the survey (Appendix C) in this second wave. A clear indication of First Nations support for self-determination/governance in the area of research.
RHS beginnings are rooted in self-determination, self-governance and nationhood that have been at the heart of First Nations across Canada for decades This report will highlight the context and struggle of First Nations in Canada in controlling its own research agenda, it will highlight the beginnings of the RHS, the steps taken to ensure First Nations support and showcase the process of this successful initiative. RHS is based on the values of “trust” and “Respect” for the people and their communities. First Nations have gained confidence and trust in the utilization of data through the First Nations Regional Longitudinal Health Survey process. This is our story….
The Beginning…
The focus and intent of this paper is on show casing the First Nations Longitudinal Regional Health Survey (RHS) process, it will highlight the political plight of First Nations in Canada in the area of self-determination in controlling its own research agenda. RHS beginnings are rooted in self-determination, self-governance and nationhood that have been at the heart of First Nations across Canada for decades.It should be noted that the First Nations Regional Longitudinal Health Survey today deals only with First Nations; the Inuit of Labardor who participated in the first wave of RHS in 1997 have opted out for an Inuit specific initiative.
We begin with a picture of the political landscape of the struggles of First Nations/Aboriginal people in Canada. The Royal Commission on Aboriginal People has defined the term Aboriginal people to include “organic political and cultural entities that stem historically from the original peoples of North America, rather than collections of individuals united by so-called ‘racial’ characteristics.[2] This term includes the Indian, Metis and Inuit peoples of Canada defined in section 35(2) of the Constitution Act, 1982.
In the report Canada Health Infoway Paths to Better Health, Chapter 7 is dedicated is to the Aboriginal Health Info-structure. The chapter was written based on two background papers written by the Assembly of First Nations entitled; An Aboriginal Health Info-Structure – Critical Issues and Initiatives and An Aboriginal Health Info-structure- Social/Political/Operational Issues[3]. Included in these papers is the history of Canada’s First Nations/Aboriginal people which is remarkably described, it sets the context for why First Nations are working towards self-determination and nationhood. Therefore, we have decided to use direct quotes for the papers as a short overview to describe the First Nations political process in Canada.
In order to provide clarity on the terminology being used in this paper, it was decided to provide a definition on what are the accepted definitions for Aboriginal peoples are in Canada. The background paper, An Aboriginal Health Info-structure- Social/Political/Operational Issues provided the following definitions to describe Indigenous peoples in Canada:
Indian
From its dubious beginnings ascribed to a lost European explorer who thought that present day Canada was the West Indies, the term Indian has survived due to its use as a legal term and to the legal conditions which are associated with it. The Indian Act, section 2(1) defines Indian as a person who pursuant to the Act “is registered as an Indian or is entitled to be registered as an Indian.” From this comes the concept of “status” or “registered” Indian. Non-status Indians are those persons who lost their status as Indians for a number of reasons including military enlistment and marriage to a non-Indian man and were no longer entitled to be registered under the Indian Act, or who were never registered in the first place. Since Bill C-31 came into effect in 1985 and amended the Indian Act to allow Indians to regain lost status, this group has diminished greatly in numbers. History will be the final adjudicator of the longevity of the term “non-status” as many of those who regained their status have done so only for one or two generations under the conditions of the Bill, leaving open the possibilities of new generations of non-status Indians in the future. (9)
First Nations
Following current general practice and usage, the term First Nation has replaced the term Indian. A First Nation community refers to a relatively small group of Aboriginal (i.e. Indian) people residing in a single locality. “First Nations”, a self-used term by Indians who have status, was not in wide usage as recently as 1982 when the current legal definitions of Aboriginal people were provided in the Constitution Act. (9)
Metis
RCAP defines the Metis as distinct Aboriginal peoples whose early ancestors were of mixed heritage (First Nations or Inuit in the case of the Labrador Métis; and European) and who associate themselves with a culture that is distinctly Metis. (10)
Inuit
Inuit are Aboriginal peoples of Northern Canada who share a similar linguistic and cultural heritage, and has replaced the term Eskimo which was commonly used in Canada until the 1970's. (10)
First Nations Historical Context
It is further indicated in the An Aboriginal Health Info-structure-Social/Political Operational Issues paper in further detail the First Nations historical context, however, due to the limitation of this report, we are unable to provide a more detailed historical content. We have decided to stay focused on the issue at hand, show casing the RHS, a community based research process. It should be noted that there has been an enormous amount of research done on this subject; one could dedicate a lifetime reporting and researching on it. Indicated below are just a few highlights from the paper mentioned above that outlines the historical context of what First Nations have experienced due to colonization:
It is in the creation of the nation of Canada through the British North America Act, 1867 that the cause can be found of much of the jurisdictional wrangling between federal and provincial governments over who has the responsibility for provision of health care to Aboriginal people today. The BNA Act gave legislative authority over Indians and Indian Bands to the federal government, as the new Canadian government now assumed responsibility for Aboriginal people for the British Crown. The Indian Act, 1876 which followed addressed these federal responsibilities to Indians and forced an arbitrary, but devastating class structure on Indians: those who had ‘status’ and therefore were entitled to special rights and considerations from the new nation of Canada; and those who missed being included in this legal definition, through reasons as diverse as marriage or military enlistment, and became in essence, a Canadian version of a dispossessed race, or ‘non-status’. Any real benefits of “status” are certainly questionable given the Indian Act’s prescriptive limitations on permitted Indian activities from birth to burial and the experiences of First Nations in the 122 years since the Act was passed; the Act’s legacy paradoxically remains as a mechanism of both special status and of social control and assimilation[4]. Its assimilation agenda was never in doubt as Canada’s first Prime Minister, Sir John A. Macdonald confirmed in 1887 where he said that civilization’s great aim was to assimilate the Indian people in all respects. [5] (10)
The Indian Act is a major cause of the economic insufficiency seen in First Nations communities. Reserves are small and often isolated from urban service centres where goods, services, financial institutions and a pool of skilled or semi-skilled labour are available. Communities are in many cases situated on land which has poor agricultural development potential. (11)
Map of Canada with Locations of First Nations Communities
Source www. Atlas.gc.ca
The Past: Research on Aboriginal People
According to the paper An Aboriginal Health Info-structure-Social/Political Operational Issues:
First Nations and Inuit people, particularly since the reserve system was created and federal health services established in these reserve communities, have been literally captive specimens for all manner of researchers, investigators, government officials, consultants, academics, and the like. This has happened for many reasons, which encompass the spectrum from altruistic to selfish. Certainly documentation has been and is needed to determine required levels of health and other services, whether programs are effective accomplishing their goals, to assist communities in accessing resources available in government programs, and for planning purposes. However, the feeling among many Aboriginal people has been that research has been one-sided; that researchers enter communities for motives of personal career enhancement, academic publishing, and/or financial incentives, in addition to the more laudable goals of improving health and well being. Research on Aboriginal peoples, particularly in a First Nations community which is serviced by Medical Services Branch, in some respects represents a close to ideal situation. The data obtained is comprehensive, it is complete, and it is supported by federal systems geared to provide ongoing statistics[6]
Perhaps the suspicion and distrust of research conducted by non-Aboriginal outsiders might have been less severe, had Aboriginal communities in the past participated in the research and received concrete, positive benefits. In an analysis of research ethics in an Aboriginal environment, past research activities are characterized as a colonizing process that has negatively contributed to First Nations’ oppression, First Nations’ science, and First Nations development. The author goes on to provide a stinging description of a typical research process:
The research is short term in nature
The researcher enters into a community
The researcher extracts information and/or biological samples
The researcher leaves the community (without clearing the results)
The researcher later publishes his/her own conclusions without the community’s consent, knowledge or any verification.[7]
As a result of these negative experiences, First Nations have adopted the Principles of OCAP (Ownership, Control, Access and Possession). OCAP has been described as “a political response to colonialism and the role of knowledge production in reproducing colonial relations.”[8] Much of the impetus for OCAP can be linked to the sorry history of research relations involving Aboriginal people in Canada. This concept will be described in detail later in the paper.
The Assembly of First Nations – The story
It is necessary to include a brief summary of the Assembly of First Nation (AFN) due to its political ties and support of the First Nations Regional Longitudinal Health Survey. The Assembly of First Nations (AFN) is the national representative organization of the First Nations in Canada. There are over 630 First Nation's communities in Canada. The AFN Secretariat, is designed to present the views of the various First Nations through their leaders in areas such as: Aboriginal and Treaty Rights, Economic Development, Education, Languages and Literacy, Health, Housing, Social Development, Justice, Taxation, Land Claims and the Environment
According to the AFN “the story of the Assembly of First Nations (AFN) is one that remains unknown to most Canadians and the rest of the world. It is the story that is lived each day by the First Nations peoples of Canada. It is the story of a struggle for self-determination and human dignity. Many Canadians are unaware of the enormous problems that the First Nations peoples have faced on the road to political recognition in this country.” [9]
The story further describes how “the First Nations Peoples of this land governed their affairs for centuries. Their unique customs, languages, and way of life were intrinsically tied to the lands they occupied. It is not a story, not a fictitious tall tale, but historical fact.” [10] The AFN also “strives to present and preserve the authenticity of North American history with the goal of enhancing justice for the aboriginal peoples of Canada. Fighting for long standing First Nations rights is not merely a fight for natural resources and self-determination; it is also a fight for human rights, human dignity, and cultural survival. “ [11]
AFN - Declaration of First Nations
“We the Original Peoples of this land know the Creator put us here.
The Creator gave us laws that govern all our relationships to live in harmony with nature and mankind.
The Laws of the Creator defined our rights and responsibilities.
The Creator gave us our spiritual beliefs, our languages, our culture, and a place on Mother Earth which provided us with all our needs.
We have maintained our Freedom, our Languages, and our Traditions from time immemorial.
We continue to exercise the rights and fulfils the responsibilities and obligations given to us by the Creator for the land upon which we were placed.
The Creator has given us the right to govern ourselves and the right to self-determination.
The rights and responsibilities given to us by the creator cannot be altered or taken away by any other Nation.”[12]
Royal Commission on Aboriginal Peoples (RCAP) Supporting First Nations Self-Determination and Self-Government
Largely precipitated by the events and outcomes of the Oka Crisis of the summer of 1990, the Royal Commission on Aboriginal Peoples (RCAP) was established through orders-in-council by the federal government in August 1991. The Commission was given a comprehensive mandate, as follows: