Telling Our Stories:Telling Our Stories:Documenting and Articulating Documenting and Articulating

Cape Breton First Nations Health Cape Breton First Nations Health NeedsNeeds

Sharon Rudderham, ChairpersonSharon Rudderham, ChairpersonTui’kn PartnershipTui’kn Partnership

Who We Are…Who We Are…• Tui’kn Partnership Tui’kn Partnership

comprised of 5 Cape comprised of 5 Cape Breton Mi’kmaq First Breton Mi’kmaq First Nations:Nations:• Eskasoni Eskasoni • Membertou Membertou • Potlotek Potlotek • Wagmatcook Wagmatcook • We’koqma’q We’koqma’q

Who We Are…Who We Are…• Combined population Combined population

of roughly 7,000of roughly 7,000• Health centres in Health centres in

each community each community offering a range of offering a range of community health and community health and primary care servicesprimary care services

• High burdens of High burdens of disease and disabilitydisease and disability

Working Jointly …Working Jointly …

5 Bands came together to plan and 5 Bands came together to plan and implement the Tui’kn Initiative (2004-2006)implement the Tui’kn Initiative (2004-2006)

Goals of Tui’kn Initiative were to:Goals of Tui’kn Initiative were to:• create multidisciplinary PHC teamscreate multidisciplinary PHC teams

• create mechanisms for collaborative health create mechanisms for collaborative health planningplanning

• build capacity for local control of health build capacity for local control of health informationinformation

Health Information and Evaluation Health Information and Evaluation ChallengesChallenges

Skepticism about the value of data Skepticism about the value of data Access to information challengingAccess to information challenging Concerns about privacy of health Concerns about privacy of health

information in an Aboriginal settinginformation in an Aboriginal setting Computer literacyComputer literacy

Health InformationHealth Information

What We Were Able to What We Were Able to Accomplish through Tui’kn… Accomplish through Tui’kn…

Electronic Patient Record (EPR)Electronic Patient Record (EPR)

• Implemented an EPR at all 5 Health Centres Implemented an EPR at all 5 Health Centres • Local client server software (i.e. data stored Local client server software (i.e. data stored

on secure server in each health centre)on secure server in each health centre)• Chose one of NSDoH’s 2 preferred software Chose one of NSDoH’s 2 preferred software

vendorsvendors• Lab and DI available electronicallyLab and DI available electronically• Reporting capacity built into EPR Reporting capacity built into EPR • EPR an important source of health information EPR an important source of health information

for communitiesfor communities

Unama’ki RegistryUnama’ki Registry

• Used EPR to create anonymous, electronic Used EPR to create anonymous, electronic registry of community members registry of community members

• Approximately 95% coverageApproximately 95% coverage• Self-containedSelf-contained• Stored on a secure server at Population Stored on a secure server at Population

Health Research Unit (PHRU), Dalhousie Health Research Unit (PHRU), Dalhousie UniversityUniversity

• Owned and controlled by communitiesOwned and controlled by communities

Unama’ki Health Information System Unama’ki Health Information System (HIS)(HIS)

• Data repository which links our registry with Data repository which links our registry with Provincial administrative health data:Provincial administrative health data:– MSI Physician Billing dataMSI Physician Billing data– CIHI Hospital Discharge dataCIHI Hospital Discharge data– Mental Health Outpatient Information System dataMental Health Outpatient Information System data– Vital StatisticsVital Statistics

• Data repository stored on a secure server at Data repository stored on a secure server at PHRUPHRU

• Owned and controlled by communitiesOwned and controlled by communities

Enhancing Health Information Skills Enhancing Health Information Skills • Trained Health Information and Evaluation Trained Health Information and Evaluation

Coordinators in each community (data Coordinators in each community (data collection, management, analysis and collection, management, analysis and reporting)reporting)

• Examples of their work: Examples of their work: – community survey on childhood injurycommunity survey on childhood injury– community survey on non-traditional tobacco usecommunity survey on non-traditional tobacco use

Outcomes…Outcomes…• Have access to new health status and health care Have access to new health status and health care

utilization data utilization data • Have better data on local health outcomesHave better data on local health outcomes• Have used data to support joint planning processes Have used data to support joint planning processes

with our District Health Authority partnerswith our District Health Authority partners• Have developed new health reporting partnerships, Have developed new health reporting partnerships,

for example:for example:– NS Health Promotion and Protection (Injury profiles)NS Health Promotion and Protection (Injury profiles)– Dalhousie Faculty of Medicine (diabetes surveillance system, Dalhousie Faculty of Medicine (diabetes surveillance system,

analysis of mental health trends)analysis of mental health trends)– PHRU (chronic disease surveillance system)PHRU (chronic disease surveillance system)

Unama’ki Registry: Next StepsUnama’ki Registry: Next Steps

• Working with PHRU toWorking with PHRU to– Further improve accuracy of registryFurther improve accuracy of registry– Develop process for routinely updating registryDevelop process for routinely updating registry

• In discussions with AFN r.e. potential linkages In discussions with AFN r.e. potential linkages with their Client Registry initiativewith their Client Registry initiative

Unama’ki HIS: Next StepsUnama’ki HIS: Next Steps

• Working to develop web-based query and Working to develop web-based query and reporting tool that will allow trained and reporting tool that will allow trained and authorized health centre staff to access authorized health centre staff to access anonymous, aggregate HIS data for health anonymous, aggregate HIS data for health planning and evaluation purposesplanning and evaluation purposes

• Finalizing data access guidelines and data Finalizing data access guidelines and data sharing agreement templatesharing agreement template

Enhancing Health Information Enhancing Health Information Skills: Next Steps Skills: Next Steps

• More training More training • Will be offering to a broader range of health Will be offering to a broader range of health

centre staff (spreading it out)centre staff (spreading it out)• Planning to:Planning to:

– Conduct HIM learning needs assessmentConduct HIM learning needs assessment– Offer new training opportunities in the use and Offer new training opportunities in the use and

interpretation of health informationinterpretation of health information– Training on how to use web portal tool to access Training on how to use web portal tool to access

HIS dataHIS data

Facilitate Sharing of Health Facilitate Sharing of Health Information Across JurisdictionsInformation Across Jurisdictions• Will establish a multi-jurisdictional platform to Will establish a multi-jurisdictional platform to

begin working through political and legislative begin working through political and legislative barriers to data sharing barriers to data sharing – Our goal is to eventually be able to: Our goal is to eventually be able to:

1) Link our registry with Provincial Health Program data: 1) Link our registry with Provincial Health Program data: » Reproductive Care Program of NS, Reproductive Care Program of NS, » Cardiovascular Health NS,Cardiovascular Health NS,» Cancer Care Nova Scotia Cancer Care Nova Scotia

2) Link federal Non-Insured Health Benefits data with 2) Link federal Non-Insured Health Benefits data with provincial health data in our HIS (ex: mental health care provincial health data in our HIS (ex: mental health care utilization and NIHB prescription drug use data)utilization and NIHB prescription drug use data)

Limitations of EPR and HISLimitations of EPR and HIS• EPR and HIS do not capture all health care EPR and HIS do not capture all health care

utilization (ex: community-based mental utilization (ex: community-based mental health services)health services)

• EPR and HIS are tools that help us capture EPR and HIS are tools that help us capture health care and disease oriented data health care and disease oriented data

• Disease stats don’t tell us much about Disease stats don’t tell us much about “health” in a holistic and positive sense“health” in a holistic and positive sense

• Need better data on other determinants of Need better data on other determinants of health (income, education, environment, health (income, education, environment, etc…) in order to get complete pictureetc…) in order to get complete picture

Wela’lin Wela’lin (thank-you)(thank-you)srudderham@srudderham@

eskasonihealth.caeskasonihealth.ca