Harnessing the Power of Health Information to Improve the Health of First Nations, Inuit and Métis Populations

NAHO and CIHI

November 26, 2009

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

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.

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.

The Canadian Institute for Health Information (CIHI)

An Overview

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.

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

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

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

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

Broad Context

Research

Projects

Surveys and

Census

Health-related

Administrative Data

Sources of Data for Health Information

Research

Projects

Surveys and

Census

Health-related

Administrative Data

Sources of Data for Health Information

-Broad coverage of

populations

-Targeted topics

-Limited participation,

snapshot or periodic

collection, expensive

Research

Projects

Surveys and

Census

Health-related

Administrative Data

Sources of Data for First Nations, Inuit and Métis Health Information

- Post-censal (e.g., Aboriginal People’s

Survey, Aboriginal Children’s Survey;

only off-reserve)

- General population (e.g., Canadian

Community Health Survey)

- FN-specific (First Nations Regional

Longitudinal Health Survey; only on-

reserve)

-Inuit-specific (Qanuippitaa?,

Qanaquippitali?, Living Conditions in the

Arctic)

- Métis-specific (MNBC Survey, Métis

Settlement Census)

Research

Projects

Surveys and

Census

Health-related

Administrative Data

Sources of Data for Health Information

-Academic and/or community-

driven

-In-depth, detailed

-One-time, limited scope

Research

Projects

Surveys and

Census

Health-related

Administrative Data

- Many community-based

studies / research projects

- Gap identified for Métis-

specific health research

Sources of Data for First Nations, Inuit and Métis Health Information

Research

Projects

Surveys and

Census

Health-related

Administrative Data

Sources of Data for Health Information

-Potentially broad coverage of

populations

-Cost effective

-Challenges: identifying

individuals, data linkage

-Data collected for different

purpose

Research

Projects

Surveys and

Census

Health-related

Administrative Data

-Vital Statistics

- Hospital and health services

records

- Clinical / functional

assessments

- Reportable diseases

-Disease registries

-Electronic Health Record

(future)

Sources of Data for First Nations, Inuit and Métis Health Information

First Nations Centre

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.

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.

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)

• 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.

Inuit Tuttarvingat

• 50,500 Inuit in Canada

• 80% of Inuit live in 52 Arctic communities

• Spread across nearly 40% of Canada

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

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

The Métis Centre

of

The National Aboriginal Health

Organization

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.

Métis Health/Well-being Data/Information

• Numerous data gaps exist

• Data/information is fragmented

• Data not easily accessible

• Data not adequately used

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

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).

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

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.

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.

Success Stories

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.

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

RHS Quick Facts

• Marital Status and Family Structure

• Education and Employment

• Language and Tradition

• Housing

• Chronic Disease

• Diabetes

• BMI and Obesity

• Injuries

• Dental Care

• Smoking and Tobacco Use

• Drug and Alcohol Use

• Health Care Access

• Non-insured Health Benefits

• Disability

• Mental Health

• Sexual Health

• Seniors

Snapshot of health and living conditions in FN

communities on the following topics:

Nunatsiavut Government

• Established December 1, 2005

• Regional Inuit Government

• Governs 5 Inuit communities:

– Nain

– Hopedale

– Makkovik

– Postville

– Rigolet

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

Administrative Data

Provincial

• CRMS

• NL Cancer Registry

• Meditech

• Centre for Health Information (Live Birth/Death)

• Communicable Disease Database

• Community Accounts

Federal/Other

• Statistics Canada (APS/ACS)

• Inuit Health Survey

• Inuit Oral Health Survey

Nunatsiavut

• NIHB systems – Deltaware and Citrix

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

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

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

MÉTIS NATION OF ONTARIO

Chronic Disease Surveillance

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.

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.

• 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.

• 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 Michiflanguages.

• 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 andunreasonable to withhold from Métis people the services and opportunities available to other Aboriginal peoples".

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

Métis TodayThe 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.”

MNO Health Branch Services

• Long Term Care

• Aboriginal Healthy Babies Healthy Children

• Responsible Gambling

• Substance Abuse

• Aboriginal Healing and Wellness

• Mental Health Demonstration Project

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

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

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

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

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

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

Past Work on Chronic Disease Surveillance

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.

• 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)

Current Work on Chronic Disease Surveillance

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

Power of Data:

CIHI success stories

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

…Leads to Improvements in Care

• Region 1: high use of anti-anxiety & hypnotic drugs

– Conducted medication reviews with physicians, pharmacists and nursing staff

– Use of anti-anxiety & hypnotic drugs decreased

• Region 2: high rates of daily physical restraint

– Staff reviewed care plans and developed a protocol for restraint use

– Daily physical restraint decreased

25%

10%

35%

20%

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.

…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.

Quote Me !

“The data—turned into information—was critical. It drove decisions.”

Trudy Reid

Winchester District Memorial Hospital

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.