The document discusses harnessing health information to improve the health of First Nations, Inuit and Métis populations in Canada. It provides an overview of the National Aboriginal Health Organization (NAHO) and the Canadian Institute for Health Information (CIHI), including their visions, histories, objectives and strategic directions. It also discusses some successes and challenges around collecting and using health data and information for Indigenous populations in Canada.

1. Harnessing the Power of Health
Information to Improve the Health of
First Nations, Inuit and Métis
Populations
NAHO and CIHI
November 26, 2009

2. NAHO’s Vision
• The National Aboriginal Health Organization
(NAHO) is an Aboriginal-designed and
controlled body committed to influencing and
advancing the health and well-being of
Aboriginal Peoples

3. History of NAHO
• Incorporated in 2000, NAHO is a unique not-for-profit organization
founded upon, and committed to, unity, while respecting diversity.
• With First nations, Inuit and Metis communities as its primary
focus, NAHO gathers, creates, interprets, and disseminates health
information, while using both traditional Aboriginal and
contemporary western healing and wellness approaches.
• At all times, the organization reflects the values and principles
contained in traditional knowledge and traditional knowledge
practices.

4. NAHO’s Objectives
• To improve and promote Aboriginal health through knowledge-based
activities.
• To promote an understanding of the health issues affecting Aboriginal
Peoples.
• To facilitate and promote research on Aboriginal health and develop
research partnerships.
• To foster the participation of Aboriginal Peoples in delivery of health care.
• To affirm and protect Aboriginal traditional healing practices.

5. The Canadian Institute for Health
Information (CIHI)
An Overview

6. CIHI Vision
To improve Canada’s health system and the
well-being of Canadians by being a leading
source of unbiased, credible and comparable
information that will enable health leaders to
make better-informed decisions.

7. CIHI Mandate
• Coordinate, develop, maintain and disseminate
health information in Canada
• Provide accurate and timely information required for:
– Sound health policy
– Effective management of the health system
– Public awareness about factors affecting good health

8. CIHI At-a-Glance
• Independent, not-for-profit corporation
• 27 data holdings
• Offices in six cities
• Expertise in:
– Data collection and
analysis
– Information
standards
– Education and
outreach

9. Strategic Directions
• Data: Enhance the scope, quality and
timeliness of data holdings
• Analysis: Continue to produce quality
information and analyses that are
both relevant and actionable
• Understanding and use: Foster
understanding of CIHI’s data analysis
and demonstrate the value and quality for
stakeholder use

10. CIHI’s interest in First Nations, Inuit
& Métis Health Information
• Striving to work with partners to provide
information on First Nations, Inuit and Métis
health and health services through CIHI data
holdings, expertise and other support

11. Broad Context

12. Sources of Data for Health
Information
Surveys and
Census
Health-related Research
Administrative Data Projects

13. Sources of Data for Health
Information
-Broad coverage of
Surveys and populations
Census
-Targeted topics
-Limited participation,
Health-related Research snapshot or periodic
Administrative Data Projects collection, expensive

14. Sources of Data for First Nations,
Inuit and Métis Health Information
- Post-censal (e.g., Aboriginal People’s
Survey, Aboriginal Children’s Survey;
Surveys and only off-reserve)
Census
- General population (e.g., Canadian
Community Health Survey)
- FN-specific (First Nations Regional
Health-related Research Longitudinal Health Survey; only on-
Administrative Data Projects reserve)
-Inuit-specific (Qanuippitaa?,
Qanaquippitali?, Living Conditions in the
Arctic)
- Métis-specific (MNBC Survey, Métis
Settlement Census)

15. Sources of Data for Health
Information
Surveys and
Census
-Academic and/or community-
driven
Health-related Research
Administrative Data Projects -In-depth, detailed
-One-time, limited scope

16. Sources of Data for First Nations,
Inuit and Métis Health Information
Surveys and
Census
- Many community-based
studies / research projects
Health-related Research - Gap identified for Métis-
Administrative Data Projects
specific health research

17. Sources of Data for Health
Information
-Potentially broad coverage of
Surveys and populations
Census
-Cost effective
Health-related Research -Challenges: identifying
Administrative Data Projects individuals, data linkage
-Data collected for different
purpose

18. Sources of Data for First Nations,
Inuit and Métis Health Information
-Vital Statistics
Surveys and - Hospital and health services
Census
records
- Clinical / functional
Research
assessments
Health-related
Administrative Data Projects
- Reportable diseases
-Disease registries
-Electronic Health Record
(future)

19. First Nations Centre

20. First Nations Centre
Our Mission
• The mission of the FNC is to advance First Nations
health knowledge. The FNC respects First Nations
aspirations for self-determination, distinctiveness
and diversity. Working with First Nations, the FNC
creates, promotes and shares health information and
research. The FNC develops tools and processes that
assist in building capacity and transferring
knowledge.

21. Gaps in FN data
• In the Census, undercoverage was higher among Aboriginal
people than the general population due to the non-
participation:
– 1996 -77 reserves
– 2001 - 30 reserves
– 2006 – 22 reserves
• Statistics Canada does not collect data for the general
population surveys on reserve.
• Caution must be used in comparing data from different
sources. Administrative data bases such as the Indian Registry
are not directly comparable to Census data.

22. FN Data Challenges
• Small population, dispersed across Canada most remote
regions, but also represented in cities.
• Self-reporting for origin and identity may be influenced by
political events and trends resulting in data shifts and “Ethnic
mobility”
• Diversity – national pan-Aboriginal approach not sufficient
and mechanisms for recognizing diversity are challenging
statistically.
• Non-responding communities
• Lack of survey data on First Nations communities
• Ownership, Control, Access, Possession (OCAP)

24. Inuit Tuttarvingat
• Inuit Tuttarvingat is the Inuit-specific centre of NAHO
• Our mission is to advance and promote the health and well-being
of Inuit individuals, families and communities by working in strong
partnerships to collect information and share knowledge.
• Governing Committee members from:
– Inuvialuit Regional Corporation;
– Nunavut Tunngavik Incorporated;
– Nunavut Regional Board of Health and Social Services;
– Nunatisavut Government;
– Inuit Tapiriit Kanatami;
– Pauktuutit Inuit Women of Canada; and
– National Inuit Youth Council.

25. • 50,500 Inuit in Canada
• 80% of Inuit live in 52 Arctic communities
• Spread across nearly 40% of Canada

26. Naasautit: Inuit Health Statistics Project 2008-1o
• Two and a half year national project funded by the Aboriginal Health
Transition Fund
• Six-way partnership to increase use of population health statistics – Inuit
Tapiriit Kanatami, Inuit Tuttarvingat – NAHO, and four regional Inuit
organizations
• Developing capacity (staffing, training, supervision) for using health data
in Inuit regions – to March 2010
• Creating a national Web site and data directory of health statistics –
launch in winter 2010

27. Inuit Data Issues
• Geographic (Inuit inhabited regions) versus Inuit-specific data – bias is
toward inflated health status when you include non-Inuit
• Confidentiality (privacy) and confidence (data quality) issues for small
population numbers
• Fewer health services in the North/transfer to south for care
• Two provinces (Quebec and Newfoundland & Labrador) and two
territories involved (Northwest Territories and Nunavut), plus southern
cities
• Interest in linking land claim beneficiary lists to government admin
databases

28. The Métis Centre
of
The National Aboriginal Health
Organization

29. Métis Centre of NAHO
Our Vision 2010-2015
• The Métis Centre develops and shares
knowledge to support the health and well-
being of Métis people.

30. Métis Health/Well-being
Data/Information
• Numerous data gaps exist
• Data/information is fragmented
• Data not easily accessible
• Data not adequately used

31. Addressing Métis Health Information and
Data Challenges
• Métis Centre literature and statistical
databases
• Provincial/regional/local surveys (MNBC Poll,
1998 and 2006 Métis Settlement Census)
• Academic engagement
• Provincial data linkage projects
• Ethics
• APS Consultations

32. NAHO, Health Human Resources and the
Aboriginal Health Human Resources
Initiative (AHHRI)
• NAHO partnership with HC-FNIHB and CIHI to develop a
comprehensive framework on Aboriginal Health Human
Resources
• Broadly defined, Health Human Resources are all the people
who working within the health care system (CIHI, 2007).
• NAHO partnership to develop a comprehensive framework,
which includes:
– Core components that lead to First Nations, Inuit and
Métis participation in health careers.
– Data elements and sources for a health human resource
Minimum Data Set (MDS).

33. Minimum Data Set: Beginning Stages
• Consisted of conducting environmental scans at both
the national and regional levels.
• Purpose of scans was to determine available
information sources and document the current
status of HHR serving FN/I&M communities across
Canada.
• These data sources would support the development
of a MDS which would form the foundation upon
which need-based HHR planning for FN/I&M
planning can occur

34. Overall Analysis
• Needs-based HHR planning requires access to
longitudinal data.
• In the same way that the supply of health providers
changes over time with migration and attrition, so
too does the health needs of a community.
• Collecting HHR, demographic and health needs data
that is collected on a regular basis over a period of
time permits trend analysis and improves the
legitimacy of planning outcomes.

35. Final Thoughts
• It is difficult to examine the need for health services without
acknowledging that the health of a community is influenced
by determinants other than the health care system.
• A MDS that is based on the health needs of the population
must take into consideration the health status of the
community (physical and mental health, as well as non-health
system determinants of health) and focus on culturally
specific patterns of service delivery or healing practices.

36. Success Stories

37. Success Story
• First Nations Regional Health Survey (RHS)
Phase 1: Data collection in 2002 -2003
 22,000 people responded
238 communities participated
Phase 2: Data collection in 2007- 2008
 Partnership with First Nations Information Governing
Committee for the RHS, the Assembly of First Nations,
and the Canadian Institute of Health Research (CIHR) ,
Institute of Aboriginal Peoples Health.

38. Importance of the RHS
• RHS respects the principles of OCAP
(ownership, control, access and possession)
• First Nations Peoples decide how information
about them is collected, managed, analyzed
and disseminated.
• Ensures that the distinctiveness of First
Nations is respected

39. RHS Quick Facts
Snapshot of health and living conditions in FN
communities on the following topics:
• Marital Status and Family • Dental Care
Structure • Smoking and Tobacco Use
• Education and Employment • Drug and Alcohol Use
• Language and Tradition • Health Care Access
• Housing • Non-insured Health Benefits
• Chronic Disease • Disability
• Diabetes • Mental Health
• BMI and Obesity • Sexual Health
• Injuries • Seniors

40. Nunatsiavut Government
• Established December 1, 2005
• Regional Inuit Government
• Governs 5 Inuit communities:
– Nain
– Hopedale
– Makkovik
– Postville
– Rigolet

41. Department of Health and
Social Development
• Program areas:
– Non-Insured Health Benefits
– Injury prevention
– Addictions
– Communicable Disease Control
– Healthy Children
– Home and Community Care
– Sexual health
– Healthy lifestyles

42. Administrative Data
Provincial Federal/Other
• CRMS • Statistics Canada (APS/ACS)
• NL Cancer Registry • Inuit Health Survey
• Meditech • Inuit Oral Health Survey
• Centre for Health
Information (Live Nunatsiavut
Birth/Death) • NIHB systems – Deltaware
• Communicable Disease and Citrix
Database
• Community Accounts

43. Access
• Current availability : on an as needed basis
• Provincial health data is limited:
Aggregated
Not Inuit specific
Accessible by request only
Databases are not linked
Data is incomplete

44. Identifier Utility
• Identifiers: NWT and Nunavik
• Ensure client confidentiality and data security
• Aim - One comprehensive record:
Using software that can interface across
jurisdictions
Accessible to health care providers on various
points of the care continuum

45. “If it doesn’t get measured,
it doesn’t get done”

46. MÉTIS NATION OF ONTARIO
Chronic Disease Surveillance

47. Who are the Métis…
• The Métis Nation evolved in the historic north-west in the
18th and 19th centuries. Born of a mixture of French and
Scottish fur traders and Cree, Ojibwa, Saulteaux, and
Assiniboine women, the Métis in the north-west developed
as a people, distinct from either Indian or European.

48. Following the annexation of the north-west by Canada in 1869,
the political economy of the Métis was destroyed. Both the
Manitoba Act (1870) and the Dominion Lands Act (1879)
recognized Métis claims to Aboriginal title, but the federal
government moved to unilaterally extinguish these claims
through individual land and grants scrip.

49. • Denied the recognition of their collective
rights, the Métis became Canada's "forgotten
people". Only in Alberta was any action taken
to alleviate Métis distress through the
establishment of Métis settlements by the
provincial government in 1938. The Métis
were officially recognized as one of Canada's
Aboriginal Peoples in the Canadian
Constitution of 1982.

50. • Most Métis live in western Canada,
both in remote and urban communities
and in Métis-only and mixed
communities. There are over 300 Métis
communities; most are English-speaking
with some northern communities using
Cree or Michif. The Métis are
distinguished by their unique Michif
languages.
• The Métis have never received the
benefits governments grant to Status
Indians and Inuit. In its final report the
Royal Commission on Aboriginal
Peoples stated "it is unjust and
unreasonable to withhold from Métis
people the services and opportunities
available to other Aboriginal peoples".

51. • The Métis are a Nation still struggling for recognition
and/or equitable support by governments, particularly
the Federal Government.

52. Métis Today
The Royal Commission on Aboriginal
Peoples noted the life experiences
of Métis People in Canada are:
• “…markedly different than that of
First Nations or Inuit. Their rights,
ignored and abused for
generations, are in urgent need of
recognition and restoration. As
one of the Aboriginal Peoples of
Canada, Métis people want to be
recognized as having their own
unique cultural and political
traditions.
They are seeking a nation-to-nation relationship with Canada.
As with other Aboriginal peoples, land and self-determination
are central issues. Métis people are seeking to rebuild their own
institutions and organizations based on the foundation of their
culture.”

53. MNO Health Branch Services
• Long Term Care
• Aboriginal Healthy
Babies Healthy Children
• Responsible Gambling
• Substance Abuse
• Aboriginal Healing and
Wellness
• Mental Health
Demonstration Project

54. Population Health Issues
• Métis not covered under the Indian Act 1876 and are
ineligible to access health programs and service,
education and social programs available to First
Nations and Inuit
• Access and provision of health care for Métis people
remains the mandate of provincial and territorial
health care systems
• Lack of infrastructure, resources and funding
• Growing physical health problems in Métis
communities
• Lack of access to health programs and services

55. Population Health Issues
• Lack of Métis population specific health data and information
– Inaccurate or incomplete data sources, inability to
extrapolate or access data, or no data
– Use of term “Aboriginal” in health literature when data
apply to First Nations (on-reserve, off-reserve) and Inuit
only
– Most statistical data available stems from Census Canada’s
Aboriginal Peoples Survey (APS)
• Limited opportunity for Métis to self-identify as Métis
– Lack of Métis identifier on health care cards
– Differing opinions on how to identify and count Métis in
Canada
• Minimal Métis-specific health research

56. The Need for Chronic Disease Surveillance
• Lack of Research for Métis – need an evidence based
approach to decision making and to inform policy
and initiatives
• APS data was the only source of data available but
caution is required as it is based on self-reported and
self-identifying respondents
• Goal is to improve health status and well being of
Métis people in Ontario – we need to know what
health issues affect Métis people
• Most chronic diseases are preventable therefore this
provides an opportunity for MNO Health Branch to
focus on prevention and health promotion

57. MNO Health Branch Research
• Diabetes Surveillance 2004
• MNO Health Branch Survey 2005
• Mental Health Research – Suicide Prevention
survey and Aboriginal Children and Youth
Mental Health Scan
• Our Health Counts (current)
• Indigenous Knowledge Network Project (current)
• Healthy Messaging, Cultural Competency and
Métis Specificity
• Youth Identity Project

58. Past Work on Chronic Disease
Surveillance
• Funding received from Health Canada under the National
Diabetes Surveillance System
• Partnership with ICES to conduct diabetes surveillance –
project started in July 2004
• Data sources included using the MNO citizenship list and
linked with Registered Persons Database, Ontario Diabetes
Database, OHIP records of physician and service delivery, CIHI
records of hospital and emergency department use and ODB
records of prescription and drug claims (over 65)
• Analysis included linkage to RPBD to apply health identifier,
linkage to ODD to determine diabetes status and linkage to
other databases to evaluate processes and outcomes of care

59. Past Work on Chronic Disease
Surveillance
Initial database sent to ICES included 13,000 citizenship
records
• Preliminary results found that approximately 18% of the
MNO citizenship list unmatched due to missing
information
• This was found to be significant in that the earlier records
in the MNO Registry were most likely those of our now
more elderly population and that this information was
vital to the data collection
• MNO began to work with PHAC to undertake a
“scrubbing” exercise of the Registry data as part of the
next project

60. Current Work on Chronic Disease
Surveillance
• Project funded March 2008 by PHAC – began
“scrubbing” of data during the spring/summer
• 2,740 files were corrected and an additional 3,027
new records were checked
• Partnership developed with ICES to conduct chronic
disease surveillance
• Carry out an Knowledge consolidation exercise
through which informal Métis-specific health
information in Ontario is assembled.

61. Current Work on Chronic Disease
Surveillance
• Funding received from Public Health Agency of Canada
to conduct Chronic disease surveillance in the Métis
population using MNO Registry data
• This year, we will be conducting surveillance in 3 areas:
Diabetes, Cancer and Cardio-vascular disease
• Data sources included using the MNO Citizenship list
and linked with Registered Persons Database, Ontario
Diabetes Database, OHIP records of physician and
service delivery, CIHI records of hospital and
emergency department use and ODB records of
prescription and drug claims (over 65)

62. CHRONIC DISEASE SURVEILLANCE
• # of records – 17,000 citizens and 5,000 potential clients to
be included
• 2 new staff hired – CDS Coordinator (Toronto), KT Consultant
(Ottawa)
• We have developed a multi-disciplinary advisory committee
to provide input into the project
• The diabetes run is at the analysis stage, and we are
currently formalizing Data-sharing agreements and
statements of work for the cancer and CVD studies
• Cancer surveillance will be incidence only because of the
small sample size
• Expected completion date March 31, 2010

63. Power of Data:
CIHI success stories

64. Measuring care in Saskatchewan’s
Long Term Care Facilities…
• Standardized clinical/functional assessments
for submission to CIHI’s Continuing Care
Reporting System
• Using Quality Indicators to
.flag areas for improvement in
.the quality of care

65. …Leads to Improvements in Care
• Region 1: high use of anti-anxiety & hypnotic drugs
– Conducted medication reviews with physicians,
pharmacists and nursing staff 25%
– Use of anti-anxiety & hypnotic drugs decreased
10%
• Region 2: high rates of daily physical restraint
– Staff reviewed care plans and developed a protocol for
restraint use 35%
– Daily physical restraint decreased
20%

66. CIHI data on birthing…
• More than 800 women with low-risk
pregnancies were travelling to Ottawa to have
their babies instead of staying closer to home,
in Winchester.

67. …rejuvenates regional service
•Winchester District Memorial Hospital decides
to repatriate the births to revitalize its
obstetrics program.
• The hospital secures funding and changes its
expansion plans to add new space.

68. Quote Me !
“The data—turned into information—was
critical. It drove decisions.”
Trudy Reid
Winchester District Memorial Hospital

69. NAHO/CIHI Partnership
• NAHO and CIHI have entered in to a Collaboration Agreement which
identifies areas of mutual interest on which to work to positively
impact the health of First Nations, Inuit and Métis.
– There is currently no organization that collects epidemiological and health
information from First Nations, Inuit, and Métis reliably across Canada
– There are major challenges/problems in partnering with First Nations, Inuit
and Métis communities to collect and distribute community specific health
research (CHR) in an environment of rapid economic, social and demographic
change.
– Challenges with engagement, collection and analysis of CHR have led to a lack
of coordinated effort between stakeholder groups regarding health policy
among First Nations, Inuit and Métis communities.
– There is also a continuing pressure to meet this increasing diversity of
expectations in an environment of decreasing/restricted financial, economic,
and staff resources.