Patient Ethnocultural Identification Henneke Cats - cancerview.ca

Patient EthnoculturalIdentificationHenneke CatsFirst Nations, Inuit and MétisKE MeetingDecember 1 st and 2 nd 2011Ottawa

Presentation topics• Introduction to The Bridge Consulting Group Inc.• Project description• Approach to the work• Findings so far• Obstacles and opportunities encountered• Disseminating the results2

Who we areStrategy and organizational change facilitation firmWork with senior leaders & boards– Clarify through evidence … new patterns?– Work through options & choices … opposing views?– Offer implementation support … end-user tests?3

Our project teamLoraine Marrett, PhDResearch Scientific AdvisorDrs. Henneke CatsPrincipal InvestigatorDiana WithrowPhD Candidate, EpidemiologyResearch AssociateWendy Neelin, Q.A.AAdministrative Support4

People-specificAction PlanCommunitybasedHHR skills& capacity, andcommunityawareness2. Scan &analyzecommunitycancerprevention andscreeningawarenesssurveys1. Survey educational needsof front-line health workers inInuit communitiesCommunityawarenesssurveysIdentify/facilitatedevelopment ofeducational programsCommunity awarenesscampaigns2012-17Share leadingpractices acrossall regions andpopulations2011/125. Scan andanalyze patientidentificationsystemsFN/I/MpatientidentificationCulturallyresponsiveresourcesand services3. Scan leadingpractices (includingnavigation andtraditional models)across cancercontrol spectrum.Implementing @ YourSide Colleague®Cancer Care course inFirst Nations regionsShare leadingpractices acrossall regions andpopulationsShare/develop newmodels of care acrosscancer control spectrum4. Scan andanalyze leadingmodels of careAccess tocare inremoteand ruralcommunitiesLeadership:6. Facilitating cross-sectoral collaboration on social determinants of health7. Raising the profile of cancer among First Nations, Inuit and Métis leaders5

Project descriptionGoal . Identify leading practices that can be shared across Canada• Determine barriers in identifying the ethno-cultural identity ofcancer patients among First Nations, Inuit and Métis peoplesScope . Cancer & other health systems• Regional, P/T, federal and First Nations, Inuit and Métis jurisdictionsResults . Inspire adoption, adaptation & new creation of ethnoculturalidentifiers in cancer/ health databases• Inform the development of common standards• Improve ability to turn relevant information into improvements incancer control6

High level workplanMethodology & Analytical FrameworkLiterature ReviewData CollectionAnalysis & RecommendationsJune - JulyMay – AugustJuly – NovemberSept – DecemberRemaining work:1. Finalize Inventory of Profiles December 92. Finalize Report January 317

MethodologyWHATStep I: Identify FNIM Patient Identification SystemsStep II: Describe & Categorize them: ProfilesStep III: Assess themDatabasesDatabasesInventoryLeading PracticesDatabasesData Collection ToolAssessment CriteriaHOWSearch Method & Screener8

Search method: 1. focus on people, andwhen they may self-identifyAnswer census/ survey questionsRegister for P/T/F health insuranceDuring a clinical/professional encounterRegister a life eventRegister for program/ serviceRegister as aboriginal status person/beneficiary / citizen9

Search method: 2. combine with taxonomyof health entitlementsHealth Plan EnrolleesClient Registry & Identification ManagementPublic HealthPrimary CareHome & Community CareInstitutional CareClinics, et al.PH Units(communicable)Schools(immunization)FPs, nurses &teamsEye, ear, teethprofessionals,midwivesHome careCommunity health centresCommunity agenciesCommunity mental healthHospitals(inpatient,ambulatory)Long term careClinics (e.g. alliedhealth)Screening programsPharmaciesLabsSpecializations: babies & moms, the aged, chronic diseases, mental health & addictionsExample: DB with cancer patients10

Example: Northwest Territories cancerregistrySource:Maria Santos, Territorial Epidemiologist, Population HealthDepartment of Health and Social Services, Government of the Northwest Territories11

Source form: cancer registration?12

Source form: health card applicationThe health card application process allows NWTresidents to voluntarily self-identify at the timeof registration - with supporting documentation - asstatus Indian, Métis, Inuit, Inuvialuit or IndigenousMétis:13

Developing a data collection tool for theprojectgeneric process for collecting and usingethnocultural identity dataProcess view serves as underlying logic fortool & analysis14

Data collection tool (1 st of 4 screens)15

Early learnings: where there’s a will …1. Broad based interest, ability & willingness to augmenthealth databases w/ identifiers– Ability: funding, skill development, real projects2. Profiling 27-46 databases and 6 infrastructure pieces– Recent: 19 of these new in 2010/11– From Atlantic to Pacific, North to South, across service domains– Inventory of Profiles: a menu of options & context-sensitive3. Need both responders and linkage implications16

Obstacles & opportunitiesBarriers experienced: Time of informants• Many informants feel understaffed & overcommitted• First Nations, Inuit and Métis communities more so• It takes time to build relations & trustOpportunities to improve time efficiencyThe [local] project concluded it was larger than could be managed locally …needed a provincial process … and a national framework• Guidelines: emerging consensus min. value set: FN, I, M• Infrastructure / harmonization: e.g. Bi-/Tripartitepolitical process, Cultural Competency training, PrivacyReview harmonization17

Disseminating the resultsKeen interest in results:1. First Nations, Inuit and Métis organizations2. Beyond cancer: chronic disease, public health,primary care3. At national, P/T, and regional & community levelsResults seen as related to a number of priority topics:• Closing gaps, equity, diversity, community outreach• Patient navigation & provision of culturally safe care• Planning & priority setting• Indicator development• Capacity building• Research18

Proposed table of contents for reportInventory of Profiles1. Acknowledgements2. Introduction3. Cross reference chart4. Health databases –P/T, Regional/ Local5. Health databases –NationalExhibitsAnalytical Report1. Executive Summary2. Introduction3. Objective of Project4. Methodology &Analytical Framework5. Results6. Discussion7. RecommendationsBibliographyAppendices19

Questions?20