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Telling Our Stories: Documenting and Articulating Cape Breton First Nations Health Needs Sharon Rudderham, Chairperson Tui’kn Partnership. Who We Are…. Tui’kn Partnership comprised of 5 Cape Breton Mi’kmaq First Nations: Eskasoni Membertou Potlotek Wagmatcook We’koqma’q. Who We Are….
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Telling Our Stories:Documenting and Articulating Cape Breton First Nations Health NeedsSharon Rudderham, ChairpersonTui’kn Partnership
Who We Are… • Tui’kn Partnership comprised of 5 Cape Breton Mi’kmaq First Nations: • Eskasoni • Membertou • Potlotek • Wagmatcook • We’koqma’q
Who We Are… • Combined population of roughly 7,000 • Health centres in each community offering a range of community health and primary care services • High burdens of disease and disability
5 Bands came together to plan and implement the Tui’kn Initiative (2004-2006) Goals of Tui’kn Initiative were to: create multidisciplinary PHC teams create mechanisms for collaborative health planning build capacity for local control of health information Working Jointly …
Skepticism about the value of data Access to information challenging Concerns about privacy of health information in an Aboriginal setting Computer literacy Health Information and Evaluation Challenges
Health InformationWhat We Were Able to Accomplish through Tui’kn…
Implemented an EPR at all 5 Health Centres Local client server software (i.e. data stored on secure server in each health centre) Chose one of NSDoH’s 2 preferred software vendors Lab and DI available electronically Reporting capacity built into EPR EPR an important source of health information for communities Electronic Patient Record (EPR)
Used EPR to create anonymous, electronic registry of community members Approximately 95% coverage Self-contained Stored on a secure server at Population Health Research Unit (PHRU), Dalhousie University Owned and controlled by communities Unama’ki Registry
Data repository which links our registry with Provincial administrative health data: MSI Physician Billing data CIHI Hospital Discharge data Mental Health Outpatient Information System data Vital Statistics Data repository stored on a secure server at PHRU Owned and controlled by communities Unama’ki Health Information System (HIS)
Trained Health Information and Evaluation Coordinators in each community (data collection, management, analysis and reporting) Examples of their work: community survey on childhood injury community survey on non-traditional tobacco use Enhancing Health Information Skills
Have access to new health status and health care utilization data Have better data on local health outcomes Have used data to support joint planning processes with our District Health Authority partners Have developed new health reporting partnerships, for example: NS Health Promotion and Protection (Injury profiles) Dalhousie Faculty of Medicine (diabetes surveillance system, analysis of mental health trends) PHRU (chronic disease surveillance system) Outcomes…
Working with PHRU to Further improve accuracy of registry Develop process for routinely updating registry In discussions with AFN r.e. potential linkages with their Client Registry initiative Unama’ki Registry: Next Steps
Working to develop web-based query and reporting tool that will allow trained and authorized health centre staff to access anonymous, aggregate HIS data for health planning and evaluation purposes Finalizing data access guidelines and data sharing agreement template Unama’ki HIS: Next Steps
More training Will be offering to a broader range of health centre staff (spreading it out) Planning to: Conduct HIM learning needs assessment Offer new training opportunities in the use and interpretation of health information Training on how to use web portal tool to access HIS data Enhancing Health Information Skills: Next Steps
Will establish a multi-jurisdictional platform to begin working through political and legislative barriers to data sharing Our goal is to eventually be able to: 1) Link our registry with Provincial Health Program data: Reproductive Care Program of NS, Cardiovascular Health NS, Cancer Care Nova Scotia 2) Link federal Non-Insured Health Benefits data with provincial health data in our HIS (ex: mental health care utilization and NIHB prescription drug use data) Facilitate Sharing of Health Information Across Jurisdictions
EPR and HIS do not capture all health care utilization (ex: community-based mental health services) EPR and HIS are tools that help us capture health care and disease oriented data Disease stats don’t tell us much about “health” in a holistic and positive sense Need better data on other determinants of health (income, education, environment, etc…) in order to get complete picture Limitations of EPR and HIS
