1. Telling Our Stories: Documenting and Articulating Cape Breton First Nations Health Needs Sharon Rudderham, Chairperson Tui’kn Partnership

2. Who We Are… Tui’kn Partnership comprised of 5 Cape Breton Mi’kmaq First Nations: Tui’kn Partnership comprised of 5 Cape Breton Mi’kmaq First Nations: Eskasoni Eskasoni Membertou Membertou Potlotek Potlotek Wagmatcook Wagmatcook We’koqma’q We’koqma’q

3. Who We Are… Combined population of roughly 7,000 Combined population of roughly 7,000 Health centres in each community offering a range of community health and primary care services Health centres in each community offering a range of community health and primary care services High burdens of disease and disability High burdens of disease and disability

4. Working Jointly …  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 multidisciplinary PHC teams create mechanisms for collaborative health planning create mechanisms for collaborative health planning build capacity for local control of health information build capacity for local control of health information

5. Health Information and Evaluation Challenges  Skepticism about the value of data  Access to information challenging  Concerns about privacy of health information in an Aboriginal setting  Computer literacy

6. Health Information What We Were Able to Accomplish through Tui’kn…

7. Electronic Patient Record (EPR) Implemented an EPR at all 5 Health CentresImplemented an EPR at all 5 Health Centres Local client server software (i.e. data stored on secure server in each health centre)Local client server software (i.e. data stored on secure server in each health centre) Chose one of NSDoH’s 2 preferred software vendorsChose one of NSDoH’s 2 preferred software vendors Lab and DI available electronicallyLab and DI available electronically Reporting capacity built into EPRReporting capacity built into EPR EPR an important source of health information for communitiesEPR an important source of health information for communities

8. Unama’ki Registry Used EPR to create anonymous, electronic registry of community membersUsed EPR to create anonymous, electronic registry of community members Approximately 95% coverageApproximately 95% coverage Self-containedSelf-contained Stored on a secure server at Population Health Research Unit (PHRU), Dalhousie UniversityStored on a secure server at Population Health Research Unit (PHRU), Dalhousie University Owned and controlled by communitiesOwned and controlled by communities

9. Unama’ki Health Information System (HIS) Data repository which links our registry with Provincial administrative health data: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 PHRUData repository stored on a secure server at PHRU Owned and controlled by communitiesOwned and controlled by communities

10. Enhancing Health Information Skills Trained Health Information and Evaluation Coordinators in each community (data collection, management, analysis and reporting)Trained Health Information and Evaluation Coordinators in each community (data collection, management, analysis and reporting) Examples of their work:Examples of their work: –community survey on childhood injury –community survey on non-traditional tobacco use

11. Outcomes… Have access to new health status and health care utilization dataHave access to new health status and health care utilization data Have better data on local health outcomesHave better data on local health outcomes Have used data to support joint planning processes with our District Health Authority partnersHave used data to support joint planning processes with our District Health Authority partners Have developed new health reporting partnerships, for example: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)

12. Unama’ki Registry: Next Steps Working with PHRU toWorking 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 initiativeIn discussions with AFN r.e. potential linkages with their Client Registry initiative

13. Unama’ki HIS: 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 purposesWorking 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 templateFinalizing data access guidelines and data sharing agreement template

14. Enhancing Health Information Skills: Next Steps More trainingMore training Will be offering to a broader range of health centre staff (spreading it out)Will be offering to a broader range of health centre staff (spreading it out) Planning to: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

15. Facilitate Sharing of Health Information Across Jurisdictions Will establish a multi-jurisdictional platform to begin working through political and legislative barriers to data sharingWill 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)

16. Limitations of EPR and HIS EPR and HIS do not capture all health care utilization (ex: community-based mental health services)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 dataEPR 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 senseDisease 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 pictureNeed better data on other determinants of health (income, education, environment, etc…) in order to get complete picture

17. Wela’lin (thank-you) srudderham@ eskasonihealth.ca